Road to Recovery

Happy Birthday!

2011-07-24T12:21:00.006-05:00

Today is Alex's 30th birthday! He is feeling better and better everyday and is definitely gaining his appetite back! We travelled to Oklahoma on Thursday to bring Nonni (my mom/Donita) home and go to Robbi and Jack's baby shower (my sister-in-law and her first baby, due in September). We had a big birthday dinner with the family on Friday night and then Alex and I went on a "date night" to our favorite Italian restaurant for his birthday last night. It was yummy and we were so glad that Alex was able to enjoy eating once again.

We met with Dr. Loftus for well over an hour on Monday, discussing his history and treatment options for the future. On Tuesday, Dr. Devine said he was VERY pleased with how well Alex is healing after surgery. We talked with him a bit about his expectations regarding weight gain and then were back over the meet with Dr. Loftus regarding some concerning bloodwork from the day before. Alex's liver enzymes are elevated, which could be from residual inflammation in his biliary duct around where his ulcer is located in the duodenum OR it could be a result of Tylenol use, medications and dehydration. After some further testing (ultrasound), Dr. Loftus determined that it was difficult to tell which was the culprit. His biliary duct is slightly dilated/more open than when they measured it in the hospital, but not by much. There was no obvious obstruction, so he wants Alex to get frequent bloodwork, stop taking Tylenol and one of his medications and see how his labs look in the next few weeks. If that takes care of the problem, we won't need to return to MN until around early November. If the bloodwork is still of concern, we may need to return in the next few weeks.

Alex is having a great birthday so far. We ate at his favorite breakfast joint, First Watch, this morning after church. Lydia has given him an extra dose of birthday "muah's" (kisses) all day. He is taking advantage of Lydia's naptime with a little birthday nap of his own. ;) We will be coming back to KC tomorrow and plan on staying put for a while! It will be so nice to be home! Alex plans on starting back at work in a couple of weeks. I know he looks forward to getting back into the swing of things.

So sorry again for the gap in updates! We hope to have more good news to come as Alex continues to heal and recover.

Love and blessings to you all!

Halfway Home

2011-07-10T20:46:00.003-05:00

Alex was discharged from the hospital on Thursday and continues to do very well! He has certain times of the day where he is more tired than others, but is gaining strength back more and more every day. We are at Grandma and Grandpa Hendrickson's house in Iowa to spend a couple of days resting. We decided that it would be much more comfortable to be around family, but still not too far away from Rochester just in case something comes up. We will be returning home on Tuesday for a few days, then it is back up to Rochester for follow up appointments with Dr. Loftus and Dr. Devine the next week.

Short update, just wanted to let you all know we are almost home!!!!

Love to you all :)

To Do: Eat, Eat and Eat

2011-07-06T07:48:00.009-05:00

First bites! YUMMMMMM!

Sorry it has taken so long to write an update, but we have been busy bees around here! Alex is doing GREAT! He is up most of the day either walking or sitting in his chair. They removed his NG tube on the 4th and he tolerated his own secretions very well throughout the day and night. Yesterday, he started with clear liquids and was on a full liquid diet and did great with his Frosty and oatmeal. The doctors were just in this morning and changed him to a regular diet for breakfast this morning! Yea! They want him to eat, eat and eat today to see how his body is able to handle digestion through his new connection. The doctors anticipate that if he does well with the food today, they will discontinue the TPN and he may be discharged tomorrow!

God is so good...he has provided just what we asked for....NO nausea and very well-controlled pain. I wish I could find the words that would adequately express the immense feelings of gratitude we have for all of the love and support that has surrounded Alex. Thank you again to our prayer warriors across the country.

Love, hugs and kisses to all of you! Below are just some fun pictures of Alex and Lydia. :)

Puzzle, Lydia after "tubbie" and bed head!

Little Miss Visits Daddy

2011-07-03T09:45:00.009-05:00

Lydia came by for a quick visit yesterday, but was fast asleep by the time she got up to the room. She was SO excited when she woke up and saw Daddy right next to her! Below are some pictures of her signing his Mayo Clinic pillow (which happened to include her shirt, unfortunately!) and giving it to Daddy.

Dr. Devine was in this morning and was very pleased with the way his incision appears to be healing. They are planning to clamp his NG tube (that is currently draining his stomach) tomorrow. Depending how he tolerates that, they will decide whether he is ready to start on some liquids and may even remove the tube then as well.

Alex continues to feel pretty good. He is starting to get very hungry and is really looking forward to being able to drink some tomorrow.

More later...I am being sent on a paper run :). Love to you all...

GAR

These Socks are Made for Walkin'...& That's Just What They'll Do...

2011-07-02T12:01:00.005-05:00

Alex is doing great this morning! He had oxygen and several other tubes removed this morning before he went on his first walk. He did great, walking at least 200 yards round trip!

Now he is sitting in his chair reading the newspaper!

Lydia should be up with Carol and Brett any minute now, so hopefully I can add some pictures of them as well. Dr. Devine and his team came by this morning to check on him. Everything is going very well. His pain is well-controlled with his IV pain medications. He will switch back to oral meds once he starts drinking liquids again on Sunday or Monday. Dr. Devine just reiterated that we are going to "take it very slow"...which sounds like a great idea!

"Devine" Intervention

2011-07-01T20:43:00.003-05:00

Just spoke with Dr. Devine....everything went great! He was able to get through the adhesions from previous surgeries fairly easily and did not see anything unexpected. He actually said from a Crohn's standpoint, he looked pretty good other than the one area in the duodenum! He did perform 4 stricturoplasties on 4 areas of small bowel that were significantly narrowed. This is where he cuts the area and stitches it back together so it is open widely for material to pass through. Dr. Devine said the surgery would have been much shorter had it not been for that part of the surgery.

Dr. Devine also said we would be taking things very slowly for the next few days. He will stay on his TPN, waiting until Sunday or Monday to try liquids for the first time. This is when he may start to get nauseated, depending on how he tolerates the liquids passing through the new anastomosis (connection). From there they will just slowly increase his diet until he is tolerating soft solids well. At this point, they will decide if he is able to stop the TPN and get enough of his nutrition orally.

Prayer requests now include LOTS of praise for a successful surgery!!! Also, quick and thorough healing, management of any pain, and (heck, let's go for it...) NO nausea. Thank you so much to all of Alex's prayer warriors out there. You are all so dear to us and essential to Alex's healing!

Out of Surgery

2011-07-01T19:52:00.003-05:00

Alex went into surgery @ about 3:30 this afternoon (much later than we anticipated). They let me go into pre-op with him while they prepped him for surgery. We got to talk with the anesthesiologists (there were several) and nurses that would be in the room with him. We were also able to say a prayer for both Alex and the surgical team right before they wheeled him out of pre-op. They gave him some anesthesia before he went into the OR so they could do his "Spinal", which will control pain post-op.

He was brought to recovery @ 6:30. They said he would be in recovery for about 2 hours, so I am expecting him back up in the room in another 30-45 minutes. I got one update at about 5:15 from the "communicating nurse" (Sarah) that just said the doctor reported that all was going well and that Dr. Devine was proceeding as planned. Sarah said that hearing less is more from Dr. Devine...that he typically only sends lots of updates out if there are unplanned events. If we don't hear much, that we should assume that all is going great and things are going as planned.

More to come after I speak with the Dr...

It is Well...

2011-07-01T12:17:00.003-05:00

We are still waiting for Alex to go into surgery. According to Dr. Devine's nurse practitioner, his first surgical case is taking more time than originally anticipated.

Yesterday, as I was leaving the hospital, the song "It is Well with My Soul" was playing on the radio. Peace surrounded my heart as I listened. The whole hymn is a great one, but these beginning words seemed to resonate the most-

"When peace, like a river, attendeth my way
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul"
...
"...though trials should come,
Let this blessed assurance control,
That Christ has regarded my helpless estate,
And hath shed his own blood for my soul."

Here's one version by Chris Rice...
http://www.youtube.com/watch?v=cPPSG_SpojY

What a great hymn. We have an awesome small group at our church and one of the ladies who is a part of that group is a singer with a beautiful voice. She sang "Give me Jesus" at our last meeting as a prayer for Alex and I. It was awesome. As I listened to this song yesterday, I couldn't help but hear her voice singing as if she was right there with us. Thank you, Vernia.

Thank you again for all of your prayers. Maybe we should add strength, focus and discernment for Dr. Devine and his team since it sounds like Alex will be following an unanticipatedly complicated case.

We will keep you updated as to when he heads into surgery.
Love to you all!

Surgery

2011-06-30T14:04:00.009-05:00

Well, about two seconds after the last post went up, the GI doc came in to go over Alex's EGD. The ulceration in his duodenum is severe with patchy ulceration throughout the second portion of his duodenum (again, the first part of his small intestines). We had a long conversation about our options, which really just boil down to surgery. Medications along with strict NPO (nothing by mouth) and TPN was our only other option, but the likelihood of the ulcerations sufficiently healing along with the increased infection risk from all the medications (steroids) make for a risky, and therefore not good, second option.

Alex is scheduled for diversion surgery tomorrow morning with Dr. Devine and Dr. Erben. They will be attaching his jejunum (just below his duodenum) to another place on his stomach. This will allow things to bypass the area of inflammation/stenosis all together. While he is in surgery already, they will also attempt "stricturoplasty" on the strictures that Cleveland and Alex's KC GI doctor have been dilating endoscopically. They have been requiring dilation approximately every 6 wks, so this part of the surgery would allow those places in his small bowel to stay open without continual repetitive dilations. Here's the picture the surgeon drew for us regarding the diversion part of the surgery...

So, now to look for the blessings in all of this...Alex's surgeon, Dr. Devine, is an extremely talented surgeon, specializing in these types of surgeries for people with severe inflammatory bowel disease. He is not a man of many words, but he does seem to be very thorough. Our nurse's mother had surgery with him and she said over and over again that he was "the best of the best". The surgeons have very clearly communicated that this surgery is not without major risk. The duodenum is behind the rest of your small bowel, resting just over the spine. It is not "free-floating" like the rest of the small intestine, either. Alex has had multiple abdominal surgeries, so scar tissue and adhesions could make it difficult to get into the abdominal cavity in the first place. The duodenum is also where all of your bile, pancreatic and other "digestive juices" are dumped, so they will have to be very careful not to disturb all of those ducts (another reason they are diverting and not just removing the duodenum). Finally, healing could be difficult due to the immunosuppressive nature of the medications he has been taking for quite some time now.

Alex is overall doing pretty well. He knows this is what is necessary for him to get better and get back to living. I had a great time recalling Wooderson quotes (Dazed and Confused, circa early '90's) with Alex while he was in recovery from a procedure today. Here was his favorite...

"You just gotta keep livin' man...L-I-V-I-N". :) :) :)

Not quite as profound as scripture, but it definitely made him giggle (more than once) today.

Surgeon was just in. Alex will be the second case in the morning. We will transfer to Methodist hospital for the surgery (still Mayo) with surgery starting somewhere are 10am-12. Dr. Devine said it would probably take between 2-3 hours.

Thank you all for your prayers. Specific prayer requests are...
1. Successful surgery with as little intestine involved as possible.
2. Wisdom and guidance for the surgeons.
3. Calm, peace and faith as he goes into surgery tomorrow.

Sweet tea and Milk

2011-06-29T08:54:00.005-05:00

Alex started his TPN here at the hospital last night. They allowed us to use our home TPN the night before since the "TPN team" was gone by the time we got up to our room. Mayo separates the lipids from the rest of the TPN like Cleveland did. However, they added iron to it this time. So...it ends up looking a lot like tea (sweet, of course!) and milk rather than Gatorade and Crisco ;).

The colorectal surgeons and GI doctors were both in and out yesterday. The surgeons were in first to get history, past surgical reports/records and discuss potential surgical options. Then the GI doctor, Dr. Alexander (great name, huh?), was in to discuss the overall treatment plan. He was very nice and helpful, discussing "one step at a time" treatment options, which is much less overwhelming. Dr. Alexander said his role is really to address Alex's current needs of resolving the obstruction. He stated that Dr. Loftus has more experience with the long-term treatment options, so he will be determining the future treatment plan with us on an outpatient basis (as previously planned).

Dr. Loftus and Dr. Alexander went over Alex's case yesterday and came up with this plan together-Dr. Alexander will be doing an EGD (esophagogastroduodenoscopy...you can see why they abbreviate!) this morning to assess how his stomach and duodenum look after they drained or "decompressed" with the NG tube and treated with several rounds of IV antacid medications. He will be assessing if the obstructed area is inflammation from the ulcer, a stricture or both. From there he can determine what we should do to correct it (meds, dilation, surgery or a combination). We really have no way of knowing how long Alex will be in the hospital until we know more from the endoscopy.

Again, thank you all for your prayers. I think Alex will feel better once there is a concrete plan in the works. Please continue to pray for the previous requests-Peace, calm and comfort for Alex and wisdom and guidance for the doctors. All of the doctors have been great about giving us time to ask questions and voice concerns about potential treatment plans. It is such a blessing to have providers who listen well and explain treatments thoroughly.

Love to you all...

Mayo

2011-06-28T07:51:00.003-05:00

We took Alex to the Mayo ER yesterday afternoon since we were not yet able to move his appointment to an earlier date. We drove up to Grandma and Grandpa Hendrickson's in Iowa on Sunday evening and then on up to Rochester that next day. Alex was admitted after some bloodwork, a CT scan and 8 hours of sitting in the ER.

Basically, we found out that the inflammation in his duodenum is not allowing much, if anything, to pass through and his stomach was therefore stretching out (distending) to a VERY abnormal size...VERY abnormal. The doc showed us the CT images and it easily took up 3 quarters of his abdomen. He said it was the largest stomach he had ever seen. So they placed an NG tube (tube through nose to tummy) to drain all of the excess fluid/residue that was not able to otherwise pass. Alex was not very excited about this, but it was absolutely necessary. He has had an NG tube in the past, but was not awake when they placed it. He got through it and I think feels much better now that there has been LOTS of fluid drained out of his tummy. The GI doctors will be in this morning to help come up with a plan for the area of obstruction.

Meanwhile, Lydia seems to be having a fantastic time on her Minnesota vaca with Nana. They went on the BUS to Walmart (fun!), played in the sand, saw ducks, went on walks, etc, etc, etc yesterday. She got a new bib that says "I'm a hoot!" with a picture of an owl :) :) :) "Owl" is her new favorite word and she's a little obsessed with birds in general (all of which she calls "owls" now), so it was very fitting! We are staying in an apartment that is just a couple of miles from the hospital. It has 2 bedrooms, a full kitchen and plenty of room for her to explore. It has been tremendously helpful to have Carol here to watch her while Alex and I are at the hospital!

Our only prayer requests right now are peace, calm and decreased anxiety for Alex and wisdom and guidance for the doctors who will decide on next treatment steps. Oh...and Alex's room number...316 :). A nice reminder of a favorite verse :).

Thank you all for your continued prayers and support. We should know more by the middle-end of the day today. Love to you all...

Good News/Bad News

2011-06-21T22:35:00.003-05:00

Good news...We found out last week that Alex has had an appointment scheduled with Dr. Loftus @ Mayo since June 8th! The bad news...that appointment is for July 18th. Alex simply cannot wait another month to be seen. So, we have since been in the process of trying to get that appointment moved up to a sooner date. Alex's GI doctor and primary care doctor have both called, letters have been mailed, and faxes of records have been sent. Dr. Loftus has been out of the clinic for awhile and is returning tomorrow (Wednesday), so we REALLY would like to ask specifically for your prayers that he will receive all of this information and be able to move Alex's appointment up to a closer date.

Alex is tolerating his TPN very well, and has even had it changed to where it runs for only 14 hours now instead of 18. If his labs from today check out okay, they may move him down to a 12 hour cycle on Thursday. He continues to have trouble tolerating food. He was discharged from the hospital with a regular diet and has been taking it very slow on eating. He eats about one small snack/meal a day. He is trying to stick with the "white" things that the doctor suggested-white potatoes, white bread, white rice, cereals, etc. You know...all of those things that the rest of us are trying to avoid in an effort to be "healthy" ;). He definitely cannot have any "whole grain" breads, fruits or veggies as they are just too hard to digest. His difficulty digesting even these small snacks indicates that he is still having too much inflammation to pass food through his digestive tract efficiently. As far as we know now, the most severe inflammation is in the very first part of the small intestine where it meets the stomach (the duodenum). This is where the most recent endoscopy and the upper GI test showed the newest and most significant areas of inflammation and ulceration.

So...specific prayer requests for tonight are...
1. Decreased swelling, increased nutrition, and overall healing of Alex's body, spirit and mind. He is so strong and fighting so hard, but I know all of this takes much more than just a physical toll on him.
2. That Dr. Loftus will quickly be able to review all of the information and understand the urgency and importance of squeezing Alex into an earlier appointment time.
3. Confidence, trust and peace that God is in control...keeping fear, worry and anxiety at bay.

Thank you all so much for your continued support. Love to you all!

TPN and Stretcher Bearers

2011-06-13T20:56:00.007-05:00

We got home from the hospital Sunday late afternoon/early evening. Discharge from the hospital was fairly painless, which is always nice! Alex's home health nurse was here within 10 minutes of when we walked in the door to refresh us on how to mix and hook up the TPN ourselves. It all came back to us way too easily... The home health nurses are the same ones he saw to get his Remicade infusions at the infusion pharmacy. They all know us and Alex knows all of them, which makes it much easier if questions do come up.

Alex felt okay today. Right now his TPN runs from 8pm-2pm, but they will slowly "ramp up" the infusion time to where he is only hooked up for 12 hours at a time (at night). He seemed more fatigued today when he wasn't "hooked up" and had a bit of a headache in the early evening. He did feel up to going to the grocery store this afternoon, but was pretty worn out by the time we got home. It was your typical hot and humid Kansas day, so I think the heat just zapped him! The nurses are coming by the house tomorrow to change his dressing and draw blood for labs, so we will ask them about the fatigue then.

Mom (Donita) has been here helping with Lydia since last week, which has been so nice. Dale came in town to help with a few things around the house and just to visit over the weekend as well. I think they both enjoyed their 1:1 time with Lydia a lot...and so did she :). Dad (Jim) will be here from Wednesday night to Friday to visit and help out, so he will get his fill of giggles, wagon rides and bubble blowing, too! Brett, Carol and Abbey have always been so helpful lending a hand to watch Lydia and we have a ton of sweet, sweet friends who have offered to do the same. We have had offers for dinners, yard work, babysitting, prayers, etc, etc...

At our church, our pastor often talks about who your "stretcher bearers" will be when it comes to times of crisis in your life. He is referring to the Biblical story (Mark 2 is my favorite version) of the paralyzed man whose friends carried him on a stretcher to be healed by Jesus. Only when they got to the home where Jesus was preaching, it was too crowded for them to actually reach Jesus. The man's friends then carried their paralyzed friend to the roof of the house, tore through the roof and lowered him right in front of Jesus...the only man who they knew could heal him. Jesus was "amazed by their faith" and healed the man on the spot. Not the faith of the paralyzed man, but the faith of his friends was responsible for this man's healing. We are so very blessed to have so many awesome "stretcher bearers" to carry Alex through to his healing, too.

So....thank you, again, to all of you for your continued faith that Alex's "Road to Recovery" will end in healing and restoration.

Saturday update

2011-06-11T12:58:00.003-05:00

Alex is feeling much, much better since the TPN started on Thursday! He is catching up on some much-needed sleep that he has missed out on with all of his recent tummy upsets. His weight has been down and going back up since his doctor's appointment on Tuesday. He looks better and better with every drip of the IV. We are still working on "ramping up" the TPN so that it runs closer to 12 hours vs. 24 hours per bag. Then it can run throughout the night and he can hook up to it at night and be "free" during the day (just like when he was on it in 2009).

A good majority of Alex's recent records along with a timeline of his history since diagnosis have been sent to Mayo. His KC doctor also put in a call to the doctor at Mayo last week. Hopefully we will hear something from them early next week.

Thank you to all of you who have offered meals, prayers and just your kind supportive words. We are so blessed to have so many caring people in our lives!

More to come...and hopefully from home!

Mayo bound

2011-06-06T22:23:00.008-05:00

Well, it's about time for another update. Many of you have already heard, so stick with me while I fill everyone else in...

Alex was admitted to the hospital during our last visit to Cleveland in early March. Dr. Shen dilated some strictures in his small intestine and then admitted him for blood transfusions because of severe anemia. He also administered IV Ig-a blood product that he felt would increase Alex's endurance and overall energy. Unexpected hospital admissions are never fun....

Upon returning to KC, Alex's local GI doc (Dr. Doumit) initiated a new Crohn's medication that is similar to the Remicade that Alex has taken before. Some patients who do not respond to Remicade will respond to Humira. He also added another medication after his latest scopes for a more aggressive approach to medical treament. This is similar to the combination of drugs Alex was on in March of '09 when his disease was well-controlled and he felt so good.

For the lasts several months, we have been alternating between scopes in Cleveland and scopes here in KC about every 6 weeks or so to manage the dilation of the strictures and monitor disease activity with biopsies. Alex had a follow-up scope in late May (just recently) with Dr. Doumit. He was not tolerating food as well as he had been in the past, but had assumed it was due to his recurring strictures needing dilation again. Dr. Doumit actually discovered an ulcer in his lower stomach/upper intestine that was affecting his ability to empty his stomach and digest food effectively. He recommended a liquid diet and addition of medication to attempt to heal the ulcer. He also spoke with us at length about receiving another opinion as he felt like Dr. Shen had exhasted all treatment options as well. He has said several times that Alex's case is severe, likely the most complicated case even the doctors in Cleveland have seen.

After much discussion, research and prayer, Alex has decided that Mayo is the best choice, so it is off to Minnesota we go! We are awaiting an appointment with Dr. Loftus at Mayo, but in the meantime have initiated TPN (IV nutrition) at the hospital where our family practice doctor is located (Menorah Medical Center). Alex has maintained his weight with the liquid diet, but even this has been a struggle. He is very thin and any additional weight loss would not be good. The TPN will hopefully bulk him up a bit and give him the needed energy that he has lost since the liquid diet started.

Alex and I both want to say thank you for all of your many thoughts, prayers and kind words over the last couple of weeks as we have needed to make some big decisions. We cannot thank you enough for all of your support, love and kindness. We will start updating the blog more frequently...maybe then the posts won't have to include so much info-like this one!

Many of you have wanted to know what to pray for specifically, so here it is...
-Tolerance of the TPN so Alex can return home and manage it safely there
-Quick scheduling with Dr. Loftus
-Wisdom, clarity and guidance for us and the doctors as it is likely that even more big decisions are to come

Thank you again for everyone's support. We love you all! Oh, and Alex would like to add prayers for a future filled with Z-mans and fries at Oklahoma Joe's BBQ sooner rather than later :). If I didn't know better, I would swear smoked meat is the only thing he thinks about sometimes...

Long Time!

2011-02-02T20:56:00.006-06:00

Wow! It has been a long, long time since we wrote anything here! That just means that not much is going on! :) Yea! Or...that we have that precious little girl to keep us busy and not posting ;)

Actually, a lot of little things have happened over the last 1 1/2 years since the last post. Alex has a new GI doctor in St. Joe, MO (Dr. Doumit) who was Dr. Shen's (Cleveland GI doc) resident just a few years ago. We have traveled to St. Joe (about a 1-1 1/2 hour drive) several times since we started seeing him about 9 months ago. He is able to do many of the procedures Dr. Shen does in Cleveland. This should save us some trips! We couldn't be happier to have found a doctor in KC who understands the treatment plan and communicates so well with our Cleveland doctors. What a "coincidence" that one of Dr. Shen's own residents would be practicing nearby. We are so blessed. He is like our own little piece of Cleveland, just 13 hours closer ;).

On a sad note, Dr. Geisler, Alex's Cleveland surgeon left the clinic. We are not sure where he went, but he will be greatly missed. Hopefully we will find out more when we go back next time. Our next trip is planned for March 1st. We have been 4 times since his major surgery (I think...they all start to run together after a while!). Dr. Shen and a new surgeon are doing an exam under anesthesia during our next trip to dilate any areas of Alex's small intestine that have strictures and try a new (and somewhat experimental) procedure to close up some of his fistula tracts. Right now the main thing is to try and keep the strictures in his small intestine open so that more fistulas do not form and food can pass through his gut without blockages. We can tell when the strictures start getting tighter again b/c he has pain and vomits. Right now, he is able to go about 6 weeks-2 months between dilations. The plan is to alternate between seeing Dr. Doumit and Dr. Shen to scope, dilate and assess any changes from there.

Dr. Shen has given us the name of a doctor at the University of Chicago that is experimenting with stem cell transplants. Basically, they are finding that patients with co-morbid Crohn's and Leukemia who get stem cell transplants are cured of the Crohn's following the transplant. This is all in the very early stages of trials, but could be an option for Alex in the future, if necessary. Obviously, we are not anywhere near this option (thank goodness!) and this would be a near-last-resort treatment.

Above is a picture of the family over Christmas. We LOVE this little lady God has blessed us with. She is our sunshine through good days and bad! lydiasloop.blogspot.com is still up and running, and I promise to post more often on that as well. :) Love to you all!

Home and Healing

2009-08-07T08:48:00.002-05:00

Alex is home again....resting and healing. He is clearly feeling much better as he even was up for going out for dinner with Brett and Carol last night! Brett came over to finish the mowing/edging of our lawn (meaning that it looks about 100 times better than usual!) and Alex opted to go out to eat rather than eating at the house! It seems to make a big difference when he gets out of the house for at least a little while every day.

We are now packing his newly opened wound on his belly with different material and they tell us it should be healed in 6-8 weeks. He is also soaking his other wounds in the bathtub a few times a day. We are scheduled to return to Cleveland for follow up on Sept. 4th and have several follow up appointments scheduled between now and then with his KC nurses/doctors. Alex was really looking forward to going back to work next week, but will now need until the end of August to recover from this last surgery.

Thank you all again for the prayers and encouragement. We know Alex is getting better day by day and are working on patiently awaiting the day he will be 100% again. Love and blessing to you all...

Surgery...part of the healing process

2009-08-04T17:41:00.003-05:00

Alex made an emergency trip into Dr. Graham's office (KC surgeon) yesterday after severe pain in his bottom throughout the weekend (much like the pain he was experiencing before surgery). He had an abscess that needed to be drained and gave us the option of doing an in-office procedure under local anesthesia or under general anesthesia in the hospital the next day. Alex opted to be knocked out (who can blame him?) and we decided that would give the doctor a chance to take a more thorough look. Here's what we found out...
1. The painful place was a large horseshoe shaped abscess that went deep in his pelvis and back around to his tailbone. Dr. made two incisions to drain infection and placed drains. It was a very good thing Alex followed his gut to go into the hospital for the procedure as Dr. Graham said that what we saw in the office yesterday was "just the tip of the iceberg" to a much more extensive area of infection.
2. The small holes that we were packing on his incision line were all connected much deeper than Dr. Graham expected. He opened up two large places on his midline incision from the previous surgery so it could heal better from the inside out. He said it would likely have never healed if it was not re-opened.

Alex's bottom already feels much, much better...less pressure and much more comfortable to sit/lay on. The abscess is from his previous disease that is not connected any longer. The infection is trying to find its way out. We will probably be in the hospital until tomorrow or the day after, just to make sure everything is okay before we go home.

Incision

2009-07-29T09:58:00.002-05:00

FYI...Alex's incision has healed so well over the last week that Dr. Graham (KC surgeon) wanted to give him another couple of weeks before thinking about opening any areas up! He'll continue with antibiotics for a week and we will go back to see him in two weeks. He may still need to open some spots up, but the doc wanted to "give it a good go" before we do :). We also met with a wonderful stoma nurse named Becky on Monday. She was extremely nice and will be a good contact if we have any issues come up as well as just for routine follow up. Some of the "proud flesh" that was previously cauterized is back (or just didn't heal from the last time), so Dr. Graham and/or Becky may burn that off again at our next appointment(s). We have one more appointment tomorrow with the KC GI's nurse practicitoner to update them on everything/inform them about current medication changes. He is no longer on the Remicaid infusions every 7 weeks or any other oral meds at all besides his antibiotics for his incision! That's a big change from 8-10 pills a day, nightly TPN, and 7 wk infusions....ah...freedom :). When we follow up with Dr. Shen (Cleveland GI doc) around September we will learn more about it that will change or not.

Thanks for your continued prayers! I wish all of you could come for a big celebration to see in person how much energy, strength and color he has now! He says he feels better than he has in a very, very long time. Right now he has spurts of energy, but still wears out pretty quickly. However, those spurts get longer and more frequent every day!

Love to you all...

Baby Blog is Up

2009-07-26T22:33:00.004-05:00

http://www.lydiasloop.blogspot.com/ is our new little lady's very own blog site...check it out!

Alex is doing great and gaining strength everyday. Dale and Mom were up this weekend and he even felt up to helping Dale cut the last two replacement doors this morning. We got bloodwork last week to see if a blood transfusion was needed since his hemoglobin has been running so low (around the upper 7's/low 8's). His hemoglobin was up to 10.5, which is much higher than it has been since about Spring of 2007! Other tests showed that his bone marrow is regenerating red blood cells at a normal rate so that hemoglobin number should continue to get better and better (normal for males is 13 and above, so that's what we're shooting for). We have 3 different appointments this week to fill all the KC doctors in on how he's doing and meet with the KC ET nurses. Alex's incision continues to heal, but may need to be opened up on Tuesday to allow for better healing. We went in last week to see our surgeon here in KC b/c of increased drainage and some spots that looked as though they needed to drain, but couldn't. He put Alex back on some antibiotics and opened up a bit more of the incision. Tuesday he will decide how much more needs to be opened if any at all. It will all depend on how much he has healed over this last week. Regardless, he said it was "no big deal. A nuisance, but nothing to be worried about." Easy for him to say, harder for Alex to swallow when it just seems like that much more time needed to heal. Thank you all for your continued prayers! Check out the baby's site and meet our new little angel! :)

There's No Place Like Home

2009-07-21T08:40:00.002-05:00

We have been home for a little less than a week now...there really is no place like home. Alex is feeling much better. His incision continues to heal. We are still packing one spot where fluid was an issue, but the rest of it looks great. The place they removed is almost completely healed already! I learned right after I posted the previous post that it was not a granuloma...but "hypergranulized tissue" or "proud flesh". We liked the "proud flesh" name as our church's last sermon series included a sermon on how to eliminate "pride" in your daily life :). Alex's outings have included a couple of walks, a trip to his parent's house for dinner, Olive Garden, church, the doctor's office today, and hopefully we will make it to the sporting goods store today to shop for new fancy tennis shoes for his birthday. We have not yet pinned down what Friday's festivities will include for his 28th birthday bash. We'll have to see what he's up for.

My mom has been in town for a few days now helping get some things finished around the house and helping take care of Alex when I'm out running errands. So far we've removed wallpaper, she's started painting almost all of the remaining trim/cabinets and we have plans to finish doors and prime the future nursery. Thursday is our first ultrasound, so there's been lots of talk about how to paint/decorate the baby's room depending on the gender. We are so very excited to find out what sex this little person is who is growing inside of me! Mostly, I can't wait for Alex and I to be able to talk to it and start calling him "him" or her "her" instead of "IT"! I plan on giving the baby his/her very own blog site after Thursday, so I'll post a link to it here as well :).

Not for the sensitive stomach

2009-07-14T12:42:00.004-05:00

We have met with the surgeons and ET nurses so far and are waiting to get in to see the GI and Intestinal rehab people any minute now. It was a very eventful morning...Alex had a granuloma on the side of his stoma that they "excised" right there in the little appointment room. We thought it was just part of his stoma, but it turns out that it was extra tissue that was doubling the size of the stoma (or what we thought was the stoma). The granuloma was harmless tissue that just built up as things healed, but was not supposed to be there. So, they removed it! Just like that. Numb him up and snip it off! I, of course, watched the whole thing...fascinating. A few minutes, lots of blood, and some silver nitrate later and he was all fixed up. The ET nurses said this is fairly common and often gets mistaken for part of the stoma (even by other nurses), so it was good that we were here for follow up for them to catch it.

We will find out more about what medicines Alex will be on at this next appointment with Dr. Shen. Then intestinal rehab will hopefully let us know the results of a series of nutritional blood tests they ran on the day Alex discharged from the hospital.

Pictures

2009-07-14T10:34:00.007-05:00

Here are a few pictures taken over the last couple of days. It sure is amazing how quickly you get spoiled by constant Internet access! It was strange not being able to just pop online and update or send a quick email.

Alex taking his first stroll to the end of the driveway and back. In the background is Gloria and John's home. You can't see it very well, but the white house on the left is the original farmhouse and the brick house was built-on later.
Only two of about 200 pictures of this cute little deer family that lives around the house. The top picture is of the whole fam...buck, doe and two babies in the front yard. The bottom picture is the two babies in the side yard. They were almost always lounging around the yard outside the screened-in porch. That made for a good picture spectator spot.

Quick update

2009-07-12T18:18:00.003-05:00

Hello all! Alex is getting some much needed R&R after 7 days of getting poked on every 2 hours. We had a bit of a scare yesterday morning as he woke up and got sick right away. We called the doctor, who put him back on liquids and off his fiber supplements for now. He did not feel sick for the rest of the day, but took it easy and rested anyway. By the evening, he was downstairs watching TV and chatting with Gloria, John, and Gloria's mother for a couple of hours. He is feeling much better today and has re-introduced some food without any signs of nausea! He even suggested we go to the movies this afternoon, so we went and saw "Ice Age" at the local movie theater. He continues working on keeping up his intake of liquids as dehydration can come on quickly and really impact how he feels. We have a picture or two to share when we can get a bit longer Internet access, so stay tuned ;).

Fluids and We're Out!

2009-07-09T14:44:00.002-05:00

The intestinal rehab team wanted Alex to get one final bag of fluids before we walk out the door. They also orders several blood tests that we will get the results of on Tuesday....mostly to see what/if any nutritional deficiencies he may have. It is safe to say we are more than ready to get back to Gloria and John's and rest without interruption for awhile. He has about 45 minutes left for the IV to be finished and then we should be discharged after all paperwork is covered. I'm packing up the last of our stuff, but will try to post an update over the weekend. Thank you all again for all of you love, support and prayers over this last week or so. We could not have done it without you!

Final Touches

2009-07-09T09:16:00.005-05:00

Dr. Geisler and his fellow were both in to give their final instructions. We will still meet with the enterostomal therapy nurse before we leave, but everything else is pretty much set. Follow up appointments are set for Tuesday, but we are not sure what time yet. If they are early enough in the day, Alex is saying that he would like to start heading back then. We'll just have to see how he tolerates all that sitting around in the waiting room first. Below are some pictures from yesterday and the day before...

Alex's happy slipper-socks :)

Final blood draw and flush of the central line before going down to get it removed.

First bite of real food other than apple sauce!

The Waiting Game

2009-07-08T20:59:00.002-05:00

We are still at the hospital. Dr. Geisler must have been in surgery late today b/c he didn't come by, the TPN doctors didn't come by and the intestinal rehab people didn't come by. So, after Alex got his central line removed we had a very relaxing day. I'm sure tomorrow will make up for it with all the final preparations for leaving. It will take some time to get everything together, but we are glad that we will have one more day to get testing taken care of and final appointments set. Alex has everything out of his body except for one drain (which hopefully will be removed before we leave tomorrow) and the staples that will be removed at next Tuesday's outpatient appointment. The morning may be very busy, but I will do my best to update before we leave the hospital. We won't have Internet access as readily available once we leave the hospital but will update as much as we can from wherever we can find access.

2009-07-08T10:06:00.003-05:00

Alex had a great night last night. It's much easier to sleep when nurses only come in for you and not a roommate as well. We washed his hair and spiffed him up so he looks just as cute as a button. :) Now he's drinking his "rehydrating formula" recipe the intestinal rehab team recommended and watching TV. Looks like there is a slight possibility that he may get discharged this afternoon. However, it usually takes a lot of work to get discharged, and even when they tell you you'll be leaving early in the morning, you never leave before the afternoon time. He's scheduled to go down to radiology sometime today to have his Hickman (central line) removed. He'll be on bedrest and observed for a while right after the procedure to make sure there are not any complications since the line is so centrally placed near the heart. Intestinal rehab also wanted some nutritional tests run and we are supposed to meet with them again today at some point. The TPN team will also need to come see us before we go. Bottom line, I'd be very surprised if we actually do leave today. My bets are on tomorrow morning, which is okay with both of us.

I met a very sweet couple last night at Gloria and John's house. I had run by to grab some clothes and take a quick shower and there was another couple sitting in the driveway when I pulled up. Their names are David and Carol and they drove in from Michigan for some follow up appointments at the clinic. They invited me to dinner with them, so we went to a nearby Italian restaurant. It was so nice to sit down for a meal that was not hospital cafeteria food with some nice conversation. We talked for a long time about a lot of things, but most importantly...their corgi "Dottie" and their daughter's corgi "BB King". They both had lots of similarities to Rusty and the lighthearted conversation was a nice change.

Just the fellow and the dietician have been in so far this morning, so I'm sure we'll have more updates later this afternoon. Love to you all :)

Speed Racin' Recovery

2009-07-07T12:31:00.005-05:00

Dr. Geisler just came in as we were walking out the door for a stroll. He said Alex looked fantastic! We discussed discharge and decided it would be best to stay until Thursday so the TPN doctors and Intestinal Rehab can get some calorie counts to set an appropriate dietary program up for us at home and make sure he will be able to be off the TPN by the time we're discharged. Geisler's PA removed a drain just a few minutes ago...one down, one to go. TPN doctors and dietician came in and said they are for sure taking him off TPN and are glad we are staying until Thursday to monitor how he does. We are staying in town for an outpatient visit with Dr. Geisler a week from today and hopefully we can get in with Dr. Shen as well to discuss medication management. Looks like we will tentatively plan on heading back home a week from tomorrow if all goes well. Whew! That was a lot of really good info in a short amount of time!
But wait...there's more!
Alex ate most of his lunch (slowly just to be safe), his pain is completely under control and there has not been any nausea! One of our sweet aides, Vernetta just came in to tell us that there was a discharge and we will be moving across the hall to a private room. Even if just for two more nights, it will be nice for there not to be two patients with bathroom needs trying to share one bathroom. Plus, there will be enough room for a cot for me to sleep on. This reclining chair tends to fold you up like a mousetrap when you least expect it, so the cot will be a welcome chance to stretch out and sleep. :) :) :)

Movin' on Up...

2009-07-07T09:29:00.005-05:00

You have to sing that title with a Jackson 5 flair...sorry, felt the need to give a shout out to the "King of Pop" today, may he rest in peace.

Alex munched on some Cheerios and orange juice for breakfast. He is handling it very well so far, so they gave him oral pain medication and will wait about 1/2 an hour before taking him off his morphine pain pump. That will be nice b/c then he will be completely disconnected from his IV's for the rest of the day (and maybe for the rest of our stay!). The dietician from the TPN team came by and said they will either decrease his TPN calories and volume or take him off of it totally tonight. It all depends on how his intake throughout today goes. If they take him all the way off it that means last night's bag will hopefully be the last one he will need!

Yesterday the nurse from healing services, Barb, came by and did a Healing Touch energy treatment with Alex. As I mentioned before, his heart rate has been very high throughout his stay, and directly after the treatment it went down to the lowest it's been yet (100 bpm...about 15 lower than the lowest before). It was amazing to watch. We talked for a long time about energy healing and how it's making it's way into the mainstream hospitals. They've done lots of research regarding how it impacts healing. Here's the website she gave me...I found it interesting- http://www.healingtouch.net/.

Things are really going well. It looks like we may be here for a little longer than we were originally told (5-7 days after surgery), but we are in no rush. Driving vs. flying gives us a lot of flexibility as far as all the logistics go. We have been trying to focus on the following verse throughout this whole process, and I think with every step we get a little better at reducing our anxiety and trusting in God to take care of everything from the big stuff like surgery to the small stuff like the where to stay, etc.
Phil. 4:4-9
4Rejoice in the Lord always. I will say it again: Rejoice! 5Let your gentleness be evident to all. The Lord is near. 6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
8Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

God has certainly given us so many "praiseworthy" things to focus on throughout this journey, including our loved ones around us. Thank you for everything...

The Plan for now

2009-07-06T14:30:00.002-05:00

Dr. Geisler was just in and agreed with the move to full liquids for the rest of today. He said we will move to a soft diet tomorrow and see how that goes. He'll also probably transition off his pain pump and over to oral pain meds tomorrow. How he handles the soft diet will determine how much the TPN will be decreased and if we will go home with it or not. The TPN doctors were in as well and said we would soon be meeting with the intestinal rehab support team. They will help us on specific diet/supplements that will ensure Alex transitions back to oral intake only nutrition successfully. We need to make sure the food is not shooting through his GI tract too quickly where he's not absorbing the nutrients but also not too slowly where obstructions become a concern. He's pretty tired from all the activity this morning, so he's napping peacefully until his dinner tray comes up in about an hour.

Yum...Applesauce

2009-07-06T12:47:00.007-05:00

Alex's diet was upgraded back to full liquids this morning! He asked right a way if he could get some water and some applesauce (turns out he was NPO...nothing by mouth yesterday, not clear liquids, so even water was not allowed). We had to wait a bit for the doctor to get the order in the computer, but he soon enough was able to try some applesauce. He finished the whole container over a period of a couple of hours with just a bite or two at a time. Taking it slow is the key Dr. Geisler said yesterday. Not too much too quickly. They took out his IV this morning and are using his central line for all infusions now. That frees him up even more! Getting out of bed is pretty effortless now, so he is getting up about every hour or so. We sat in the waiting area for a while to get some sunshine this morning. His spirits are much, much better today and he is much more awake and active today. Below are some pictures of the applesauce eating and other various shots...

New pants, too!

Relaxing in the waiting area...catchin' some vitamin D with a couple of other patients from the hall :)

Carol and the infamous fountain from previous posts. Just so all you skeptics out there know...she was just as impressed as I first was with the fountain :). Really this picture is of all the cars in the background. They are the entourage for the princess of Saudi Arabia who has been residing on the entire 8th floor of the cardiac building. She is about 80 years old and has supposedly been here for a few months now. At least some of these cars are always in the front circle and I guess have been the entire time the princess has been here. This is the most that I have ever seen...about 6 black Mercedes and 6 black Escalades, all with New York plates, very dark tinted windows, and at least one police escort. The drivers kind of remind me of mobsters standing around with their official-looking black suits and diplomatic blue or red ties.

Alex outside Gloria and John's house after we first arrived.

Sunning the first 'mater from our garden. It wasn't quite ripe enough to eat and I wanted Alex to be able to taste it....so we utilized the sunshiny dashboard for part of the road trip to speed things up a bit. It worked, and boy was it delicious!

M53-19

2009-07-05T10:25:00.002-05:00

It was kind of hard moving floors at first. Once you get used to your surroundings, change seems kind of scary. However, we saw several nurses that we knew and that remembered us from January. That was very comforting :). One nurse commented on how "buff" Alex looked as compared to the last time we were here since he was so thin last time (about 35 lbs lighter). I think I saw him blush a little ;).

It did take two of our H70 nurses to navigate his bed plus me running behind with his IV pole to get him moved. There is lots of construction going on, so we had to take a route that was a little off the beaten path to get to our new building and floor. Alex was very patient with the three of us as we tried to navigate into tiny elevators and across carpeted areas. Our M53 room is semi-private, but our roommate is a very nice younger guy (looks to be a little younger than Alex) who is awaiting surgery for his Chron's disease. Although the room is a little more cramped overall, Alex has much more room to navigate around his bed to get to both the bathroom and the door.

Alex is feeling much better. He is very tired, but is getting up and down for walks with much more ease than previously. They are reducing the number of calories in his TPN tonight to begin to ween him off of it. His potassium has been low for the last two nights (coupled with low magnesium the night before last), but they say that's not uncommon and are managing it through additional IV infusions as necessary. I think the episode this morning and the back step in diet has discouraged him a little bit, even though he continues to be doing exceptionally well in all other areas. His heart rate was better...down to 114 after the move, which is the lowest it's been since before the surgery. Please send encouraging thoughts his way. He continues to be healing so well and doing a great job of working to get better with walks, rest, and breathing exercises. We just want to make sure he continues to focus on those things rather than the tiny "bumps in the road" so he keeps his spirits and motivation up as much as possible. Also, please pray for a safe flight for Carol as she goes back to KC this evening.

We hope you are all having a blessed Sunday...again, I promise we'll post some pictures as soon as Alex feels up to it :).

On the Move x 2

2009-07-05T07:43:00.004-05:00

Last night (or early this morning) around 1:00, we moved to an empty room down the hall so Alex could have his own room (at least until someone filled the other bed). His roommate was not terrible in the other room, but this gave us a clearer path to get in and out of bed as well as some quiet for sleeping. He slept pretty well between bathroom trips, blood sugar checks, weight checks, vitals, etc. And the best part...his temp started rising at around 11:00, but only got up to just over 100 (thanks for the energy flow, Mom...it worked!).

We have a wonderful nurse this morning named Marlene who just had a grandbaby of her own on Sunday. Her daughter is a pediatric physical therapist who is about our age. She brought pictures of baby Ty by in her "grandma's brag book" to show off. Now that we have moved to our new room and have a fantastic nurse, they have found a room on the colorectal floor for us. :) And...we got the floor that we requested!! His new room number is M53, bed 19. This is the same floor we were on in January, and the nursing staff was phenomenal. Marlene is also good friends with our favorite nurse from that floor, Barb, so we are going to see if we can get her, too. In January, all the M53 rooms were private, so hopefully that is still the case. We are just waiting for nursing to finish report to start the move.

One specific prayer request-Alex did have a short bout of severe nausea this morning followed by lots of vomiting. It came on very suddenly and was over as soon as it began. God's timing kicked in and Geisler's fellow came to round just as they were paging them. He changed Alex's diet back to clear liquids from full liquids for today until we're sure things are settled back down. He won't miss much of anything other than his red gatorade :(. He is feeling much better and sleeping soundly right now. Dr. Ogilvie (the fellow) said the vomiting and diet change was just "a bump in the road" but the decreased overnight temp, bloodwork, bowel function, and other vitals still looked wonderful.

We'll keep you posted on move #3 :). Love to you all.

Happy 4th!

2009-07-04T07:03:00.002-05:00

Good morning! Alex had a bit of a rough night last night...his temp got up to 102, but they were able to bring it down by early this morning. Mostly, it meant that he did not sleep much and is very tired. He's trying to get some sleep now and it feels like to me that his temp is normal (although I have not yet perfected the mom kiss-to-the-forehead thermometer yet). Carol stayed the night last night and was no doubt a fantastic nurse. Sometimes all you need is your momma :).

I was able to go get some sleep at the hospitality house that we are staying at last night. It's about 20 minutes or so from the clinic in a suburb of Cleveland. Cleveland-area families volunteer their houses for patients and their family's to stay before, during and after doctor's visits and hospital stays. It is so nice to have a place to get a quick shower and a few hours of some good quality sleep. We are so blessed to be staying with very sweet and caring people named Gloria and John. They also have a wonderful dog named Molly who greets you with a nudge for some petting as soon as you walk in the door. She's very gentle and reminds me a lot of Rusty.

We hope that everyone has a wonderful and safe 4th of July and we will update with some pictures of Alex walking soon! Love to you all :)

Drinking, Walking and Sleeping

2009-07-03T13:05:00.003-05:00

The doctor okayed liquids into Alex's diet. So far he has had an orange popsicle and some water and continues to do great! He's slept quite a bit this morning, but did go on a long trip out of bed and into the hallway this morning. Once he gets out of bed, he does pretty well. It's just the rolling over and pushing up to sit and then stand that's still a little tough. Dr. Geisler says he is not concerned with his high heart rate and thinks it's b/c of excess fluid throughout his body and will resolve as he heals, starts back his TPN and becomes more active. We'll hopefully move soon to a colorectal floor, but I have no doubt that we are right where we need to be for right now. :)

Good 4th-Eve Morning!

2009-07-03T07:20:00.003-05:00

Another fantastic night for Alex! His pain is currently completely under control with his pain pump. He is pushing that button like a mad-man, but has been able to stay on top of the pain before it creeps up on him. He found out early that if he waited to use the pain pump medication until he was in a lot of pain, it took much longer to get it to subside. On a scale of 1-10, he says he's a 1-2...excellent!

Everything else is looking great as well. His heart rate was down a little this morning, oxygen levels are going up, no signs of nausea (Alex thinks I'm paranoid about this one), incision looks like it's healing beautifully and he is in great spirits. We think the doctor will upgrade him from ice-chips-only to a liquid diet today. He is highly anticipating the taste of that first cherry Popsicle, so that will be exciting :). Our prayers are being answered one-by-one...thank you so much for all of you that have surrounded us in those prayers. We'll update after the doctor comes in :) Love to you all!

One foot in front of the other...

2009-07-02T16:20:00.003-05:00

Alex just took his first walk to the door and back to his bed. His oxygen is still on the low side and his heart rate has consistently been high, so he's not allowed to walk out of the room quite yet. He did a fantastic job on his first trip, though! In his words "the hardest part is getting up, it's easy after that!" He stood by his bed while our lovely aide Alice changed his sheets and got us warm washcloths for us to clean him up a bit. He stood for the whole "bath" and is now back in bed with a fresh set of sheets and a fresh gown. His pain is much better than it was before and he still has no nausea! He's one tough cookie if you ask me!

Address...

2009-07-02T15:48:00.002-05:00

Some people have emailed for Alex's address so here it is below...

Cleveland Clinic H70-16
9500 Euclid Ave
Cleveland, OH 44195

Hopefully the room number will change if we get a room on the colorectal floor.

Healing Rain

2009-07-02T07:53:00.005-05:00

It's another rainy day in Cleveland, OH. People are beginning to get nervous that weekend firework shows aren't going to play out as planned.

Alex had a good night last night after he got settled into his room. The doctor came in a few minutes ago and said he looked much better than he expected for what they put him through yesterday. The composite closure (closing the area with his own tissue in place of the mesh) takes a lot of abdominal manipulation during surgery. His left side is hurting a bit more b/c they had to do a lot more releases on that side. They are making some changes in his pain medications to try to make him more comfortable. He has about 3 ft. of colon left and we will start looking at reattaching after the baby arrives. His Chron's is considered a little more severe than they thought previously b/c of the presence in the small bowel (that was a bit of a surprise). However, the strictures were isolated to about a 8in-1ft. section and all strictures were resolved without having to remove them.

Right now we are waiting on the enterostomal nurse to come and fix him up with an abdominal binder so he can venture out of bed and to the doorway. Then we will venture to the hall and so on and so on. Hopefully we'll be able to make a loop around the nurse's desk by the end of the day. He is not very excited about these excursions and I am always trying to find the balance of nagging ball-and-chain/walking drill sargent/spirometer nazi and understanding wife considering the amount of pain he's experiencing. It will make him heal so much faster and be safer for his lungs, heart, etc if he is as active as possible as early as possible. TPN will start again tonight and run for 24 hours, then cycled back to 12 the next day.

Prayers of praise: Dr. said the "angry" area of colon was much worse than anticipated, but after calling in his senior partner for help, they were able to clean the area up and hand sew things back to very healthy rectal tissue with lots of success; no nausea yet; no loss of small bowel; loop ileostomies that will be easy to close when it comes time; successful removal of all foreign material (mesh and clips) and closure with his own tissue with minimal tension; GI sounds already!; loving and supporting family and friends.

Prayer requests: Nausea to continue to stay far, far away; pain management; tolerating any upcoming diet increases to lead to eventual d/c of TPN; oxygen levels to improve so he can get off oxygen; minimal pain and maximal strength for walking; healing, healing and more healing of composite closure and incision.

Settled...

2009-07-02T00:15:00.002-05:00

Alex just got settled into his room on the orthopedic floor (H70 bed 16 for those that have been asking). We are hoping that he will be moved to one of the colorectal floors as soon as a room opens up. We thought that he may have to stay the night in the noisy PACU, so we are thankful that he got a room at all (this is a very popular and busy hospital!). He is sleeping and seems to be tolerating the pain well. He sends his love to you all and thanks you for the comments and emails of encouragement.

And he's out!

2009-07-01T17:08:00.003-05:00

Thank you, thank you for all of the prayers for Alex! They were most definitely answered! Alex did wonderfully in surgery. He lost NO...that's right...NO small bowel! Dr. Geisler was able to remove a "good majority" of the mesh with no loss of the small intestine. He also removed several metal clips that were holding the mesh in place. Some of the left colon was removed (the part with the hole) and a loop ileostomy was placed where they bring a loop of small intestine to the skin. He did have two strictures in his small intestines; one was repaired (cut and re-sewed to make the area wider) and one is at the stoma site and will "take care of itself". They were able to use his own tissue as a replacement of the mesh (another answered prayer!) so the mesh did not need to be replaced. He does have 2 drains just under the skin because of this, but it will be worth not having to put something else foreign in to replace the mesh.

Carol and I just got back from the post acute care unit to see him and he looked great. He was sleepy and definitely utilizing his pain pump, but was able to talk to us a bit while we were there. If you read this sooner rather than later, please pray that we get into the M53 unit. Those rooms have single beds (no roommates!) and we already know some of the nursing staff from our January stay. Thank you again for all of your prayers...I know we've said it a million times, but we truly could not have gotten through this without all of your support and strength from such a loving and gracious God. Love to you all and we'll keep the updates coming.

He's In...

2009-07-01T12:09:00.004-05:00

The surgical team took Alex back to the OR about 45 minutes ago. We will receive updates on our pager (like last time) and get telephone reports from the doctor periodically throughout the surgery. Alex was very relaxed and calm when they wheeled him out of the surgical waiting room. Thank you for your prayers and we'll keep everyone informed as we know more. :) Love to you all.

Quick update

2009-06-30T15:05:00.002-05:00

We are finished with our marathon of 7 pre-op appointments...yea! We've been here since 9:00 and momma is hungry, so this will be short and sweet.

Everything is set for surgery tomorrow. Alex got a brand new tattoo to mark where his ostomy will be placed, we met with the ostomy nurse, surgeon, internal med, cardiology and surgeon's nurses. All of our millions of questions were answered and we are feeling well informed, but a bit overwhelmed. We arrive for surgery at 10am with surgery scheduled for around noon. The procedures will include removal of diseased part of colon, temporary ostomy placement, removal of any mesh necessary, removal of any small bowel attached to mesh, and replacement of mesh with more biologic material (less likely to become infected). The surgery will last anywhere from 2-8 hours with the goal being as little small bowel loss as possible. Thank you again for all the prayers and we will update more tomorrow. Love to you all!

On the Road Again...

2009-06-30T09:15:00.005-05:00

Alex and I arrived in Cleveland safe and sound last night at about 7:30 or so. We split the trip up into two days, stopping just outside of Indianapolis to stay the night on Sunday. It was a nice drive with wonderful weather and plenty of good places to stop along the way. We are staying at a couples house in a suburb of Cleveland called Parma Heights through the Hospitality Homes of Cleveland (another lodging option the Clinic offers). The house is a really neat home that reminds us a lot of Alex's Aunt Emma's house. The couple is very nice and friendly. We look forward to getting a chance to get to know them even better in the weeks to come.

As a follow up to the previous post, and as most of you already know...Alex will be having surgery tomorrow morning to have a temporary ileostomy placed, resection of portions of his bowel, and possibly removal of the mesh that was placed to repair hernias from previous abdominal surgeries. We will know more specifics about what exactly will take place during surgery after our pre-op appointment this afternoon. We'll update everyone after we know more later today.

Specific prayer praises: Safe arrival to Cleveland and to the clinic this morning, excitement and anticipation of finding out if we are having a boy or girl baby(July 23rd!), and smooth sailing on pre-op appointments so far. Specific requests: Peace and calmness leading up to surgery tomorrow, rest tonight, safe travels for Carol this evening as she flies into Cleveland, understanding of what will come following surgery, and rest and guidance for the surgeon and surgical team. Thank you so much to our prayer warriors out there....we can feel and greatly appreciate your love and support.

Update...

2009-05-28T12:21:00.004-05:00

I'm sorry for this post being so short in advance...We are in Cleveland for our follow up appointment and it looks as if Alex is back on the track of surgery. We don't know much at this point, but he has a couple of more specific tests to determine what our next steps will be.

We just have a few specific prayer requests that I wanted to get out to all of our prayer warriors...Dr. Shen is leaving for a teaching tour to Chicago and then China tomorrow, so we need prayers for these tests to be completed early enough that he can view the results....

Answered prayers

2009-03-25T22:09:00.004-05:00

Well, you would think with such exciting news, we would be on the ball with this post! Our appointment in Cleveland last week went extremely well (beyond words, actually)! As many of you know, I'm not very good at condensing stories, but I will do my best :).

Alex had his colonoscopy on Tuesday (a week ago) and later that afternoon we met with Dr. Shen (Alex's GI doctor who turned out to be more awesome than we could have imagined). Basically, this is what we found out from Dr. Shen...

We need to change some of the meds around and come back in a couple of months to follow up. At that point Alex will also have another colonoscopy with a "balloon endoscopy" where they use a balloon to stretch the severely inflamed part of his colon out...sounds like an angiogram of the intestines if you ask me. They also may directly inject certain portions of his colon with steroids at that time. If he looks good then, they will take him off the TPN and see him back for possibly another balloon endoscopy in 6 months or so and then switch some of his medications back to the preferred medications.

So...what about the surgery, you might ask (because we sure did!)..........Not necessary! "Absolutely not" would be Dr. Shen's exact words. He said he feels like there are many more options before surgery is necessary for right now. Dr. Shen said many amazing things during our meeting with him, but the thing that won us over the most was him starting off our conversation by recognizing that management of these medications (which are not nice medicines, lots of side effects come with the benefits) is very difficult, but in making decisions he always makes final decisions based on decisions he would make for his own son's health and safety. I could go on and on, but basically...he was fantastic.

In all honesty, we were not exactly jumping up and down at this point. It was more like silent shock. We had both prepared to go in and set a surgery date and it took quite awhile for the news to set in. After meeting with Dr. Shen, we met with Dr. Geisler (the surgeon who saw Alex last time and the one who did the colonoscopy that morning) since he could really compare really-sick-Alex to Alex's improved condition. He said that Alex did look very much improved and stated over and over again how much he admired Dr. Shen's ability to manage this disease medically. He agreed that surgery was not necessary at this point, and even said himself, "now if you have a GI doctor and a surgeon saying that, you know you have made some wonderful improvements!"...most of the surgeons so far have really wanted to do just that...surgery, while the GI doctors have almost always been hesitant to take that step.

Bottom line....we are so blessed to be where we are today considering how scary things were just a short couple of months ago. We can attribute Alex's healing to nothing else but answered prayers from the ultimate Healer. Thank you again for all of those prayers, and keep them coming.....He's obviously listening! :)

Love to you all,
Alex and Gena

New news...

2009-02-10T23:38:00.003-06:00

Good news!
Well....Alex's doctor's visit yesterday came with some wonderful news... Alex can eat again! Not eating was terribly difficult, and his GI doctor from Cleveland and KC discussed his need to "fortify" himself as much as possible as he is still extremely malnurished. Even with the TPN, it takes a lot of work to get back up to a normal range. His nightly dose of TPN is going great...it is just part of the routine now before bed...and now before we eat dinner together! It is so nice to have that family time back in our day. As Ninny always has reminded us...it is very difficult to replace the kind of communication that goes on around the dinner table!

Pack on those pounds-
Alex has gained about 10 pounds since he was admitted to the hospital in Cleveland. He's up to a whopping 173, so the TPN is doing it's job! The idea is to get him back up to a "good fighting weight" as the doctors say of about 195ish. He's getting there....slowly, but surely!

Engergizer bunny (well, not quite yet...)
Alex's energy is improving every day. He is up to working full days now after trying a week of half days last week. So far so good! He was definitely full of energy this evening...and with this being parent/teacher conference week, it was a perfect time for him to use that energy to tease me out of my serious "work mode" when I got home today :). Although, when he gets tired, he gets tired quickly and falls asleep hard and fast.

Next steps-
We have two appointments on the 17th of March in Cleveland. One with Dr. Geisler (our awesome surgeon) and one with Dr. Shin (our soon-to-be awesome GI doctor...we haven't actually met him yet). Dr. Shin is a different GI doctor than the one we saw last time, but has come highly recommended for Alex's situation by Dr. Geisler. If Alex was his brother...this is who he would want him to see. Alex also got the opportunity to talk to a lady here in KC who is one of Dr. Shin's patients as well as a patient of our KC doctors, too. We absolutely feel like she was a major God-send as she was so comforting for Alex and could answer lots of our questions about how all this long-distance planning takes place.

Thank you all again so much for your prayers and support! We love you all! :)

Home again!

2009-01-30T08:58:00.003-06:00

We are so sorry it took us so long to finally post this...but we are home! Thank you so much to all of you that prayed for a safe, smooth, and hassle-free trip home. It was all that and much more! We finally found the wonderful driver that had been recommended by a friend (thanks, Jeanie!) to us to take us to the airport. I had tried to call this guy several times, but had written his phone number down wrong....I was one digit off. Just "by chance" they were the company that the hospital concierge called to transport us from the hospital to the airport. It is only him and his brother driving during the winter months, so there was a 2 in a million shot at getting one of them randomly. Hmmm.... He knew the curb side guys for the airline, so our bags were checked and a wheelchair was there for Alex in about 3 seconds. We were the only ones in line for security and were at our gate in plenty of time to make our flight...which was early. We got to baggage claim just as our bags were circling the carousel, Brett called at exactly that time to say he was outside to pick us up, and the home health nurse was at our house about 10 minutes after we got home to show us how to hook Alex up to his TPN.

God is good...all the time. ;)

So Long Cleveland!

2009-01-26T20:10:00.004-06:00

Tonight is our last night here at the Cleveland Clinic hospital. Alex was hooked up early to his TPN, so he will be off of that before 9:00 a.m. Our flight does not leave until 5:00, but we will land just before 6:30 due to the time change (and direct flight!). We are looking forward to snuggling into our own comfy bed that neither rolls away nor inflates/deflates with every movement.

Alex spent most of the day resting and feeling very hungry. Not eating really stinks. We did take a trip up to the "rooftop pavilion" tonight while he was unhooked from all his IVs. It is located at the very top of the clinic's newest building and is lined with ceiling to floor windows along one side. Through those windows, you are able to see the entire Cleveland skyline with Lake Erie in the background. It is a breathtaking view to say the least! I was able to "namaste" my stress away up there earlier during one of the clinic's nightly yoga classes. That did mean that I missed Alex's visit by the clinic's therapy dog. He said it was a lot like the dog visit we had at Shawnee Mission, but it was tough to compare to "Hawk", the Samoyed from KC. :)

We cannot wait to get back to Kansas City! We hear that we are bringing the cold, snowy weather back with us... It may not be warmer, but we will still be glad to be home!

Model of CC campus

2009-01-25T20:06:00.003-06:00

Here is a picture of a model we found downstairs of the campus. Alex took the shot from above, and we labeled it. You can see we had quite the walk through the skyways and buildings to get from the Digestive Disease Institute to where his hospital room is.... It looks like a long way from where our hotel was and where we are now, but it was a walkable distance...

Snowy Sunday...

2009-01-25T19:07:00.006-06:00

Today was a very sluggish Sunday....it was snowy and gray, which made for perfect napping weather. We took another trip around different parts of the hospital today, so here are some pictures of our findings...

There was a whole section of baseball paintings...here is Alex with KC Monarchs player Satchel Paige...

And here with Cubs player Ernie Banks.

This was a really cool piece of art...Obviously, Alex was much less interested and would not pose for the pic. Little did he know, I caught him in it anyway. Think of him as a reference to scale rather than a true focus of the photographer :). These are little metal letters strung vertically on wire. At first, it just looks like a bunch of letters hanging in front of a large white wall, but when you look closely, each vertical line is an inspirational quotation. Below that is a man made out of the same kind of letters...We don't think those actually spelled anything out, though.

Icicles...as promised

2009-01-24T21:20:00.003-06:00

I snapped a quick pic of the infamous icicles on my way to drop the rental car off today. The weather really "warmed up" to just about freezing yesterday and then went back down and started snowing today, so they weren't quite as big as when we first got into town. Sorry it's so dark, but I was in a hurry to not block traffic :). I think it was worth it!

Yum...Gatorade and Crisco

2009-01-24T20:56:00.004-06:00

As previously posted, Alex's TPN is a little different than it has been in the KC hospitals. Instead of steak and eggs, we call this one Gatorade and Crisco... So far, he gets a big bag of yellow stuff that consists of all the vitamins, minerals, calories and other nutrients that is hung every night and for the last two night has run for 24 hours. They just hung his latest bag, which will run for 18 hours since he tolerated the 24 hour at full calorie one so well (meaning his blood sugar, electrolytes, and other levels in his blood stayed very stable). If all of those things continue to stay stable, he will be leveled down to a 12 hour bag the following night. They level down (or "cycle" as the TPN team calls it) very carefully and slowly with frequent blood labs to monitor how he is handling it. Any adjustments will then be made for his final bag on Monday night and we should be heading home sometime on Tuesday (subject to change at any time depending on how he does). If all goes as well as it has so far, he will only have to be hooked up at night and be free from the bag and pump during the day. This is both the most convenient and the safest option for him. He is on a "weight gain" formula as to make him safely and slowly gain weight even without eating.

The hospital here gives lipids separately (i.e., Crisco) and only three times a week (Mon, Wed, and Fri). The pic below is of last nights lipid/nutrient combo. It sounds like he will only get the lipids about once a week when we are at home.

Out and About...

2009-01-24T20:08:00.005-06:00

We went for a long walk today all the way down to the lobby. I really wanted Alex to see the fountain outside of the main entrance of the hospital...it is so neat! Since we walked over from the Digestive Disease Institute through the skyways and other buildings, he didn't get to see it on the way in. I will have to apologize in advance to all of my fellow "City of Fountains" residents, but this is the coolest fountain I have ever seen. Below is a picture that does not even come close to doing it any justice. I thought the video showed a little more...if it comes up. It is made out of acrylic, about 2-3 feet tall and has a hole in the middle (kind of like a donut). So the little white patch you see in the middle is snow. The inside is hollow with lights and rocks and just a small amount of water flows over the top of the acrylic. It looks like a disc of water just floating and moving around. Also, it looks completely different at night, with the lights making dots underneath the water. When it's still, it almost looks like glass (like in the day pic), but when it's breezy, it ripples (like in the night time pic).

Comments...

2009-01-23T17:51:00.002-06:00

Okay everyone...I have received several messages that many of you are having a hard time commenting on the blog. I changed a few things, so now instead of the comment box being embedded, it should pop up in a new window. If you have a pop-up blocker, you should be able to push and hold "Ctrl" while clicking on the comment link and it should bypass the blocker. I also took off the work verification part, so we may get some random spam comments, but hopefully it will make it easier for those of you who want to leave comments. You can also feel free to email us at gar922@att.net if you don't want to mess with the whole comment thing.

Thank you so much again for all of your prayers and support. I hope this helps...I am far from a computer genius, so if anyone has any other ideas, send them my way!

To Eat or Not to Eat...that is the question.

2009-01-23T17:33:00.002-06:00

It seems we have a little change in the eating plan for Alex. Previously, they were telling us to have Alex take in as many calories/nutrition orally on top of his TPN. Now, the GI doctor wants him to "rest" his bowel, meaning only taking a few bites and drinks of things here and there for taste. Then, they want us to follow up with them in two months to see how his colon looks after an extended time with a limited amount of stuff passing through it. After that assessment, they will determine if Alex should start to add foods slowly back into his diet to see how he tolerates them. The GI doctor says you can often get a very diseased colon (like Alex's) to heal and decrease most, if not all, of the inflammation through the bowel rest. The trick will be keeping it that way when/if he begins to eat again. He did not sound like he was going to change much of his medication, so we will continue with basically the plan that Shawnee Mission's GI doc's set up for us with just a few adjustments. Looks like we will get to do some sight seeing in Cleveland after all!

Communication is key...

2009-01-22T20:07:00.003-06:00

Yesterday, when Alex was in the operating room, I was given a pager (shown below) that buzzed and texted me with updates throughout surgery. It would say things like "patient is now moving to recovery" and "operation has now begun". They also would periodically page me overhead to come to the desk to tell me updates on his status. They had phones in the waiting area (more like the waiting building) that the doctor called me on before they even woke Alex up to tell me what he saw. He called back while Alex was in recovery and gave me an update of what was to come and what several colleagues had to say about it. There was even a huge computer screen that had all the patients initials on it with exact times that they moved from pre-op to the OR to post acute care, recovery, and finally back to their rooms. It looked very similar to the giant airport computers that display arrival/departure times.

It was so nice to know exactly where he was at all times. I was able to go anywhere in the hospital with the pager, which meant I was able to get something to eat while he was waiting for 2 hours to go into surgery. He had to wait so long b/c he drank contrast during his CT scan earlier in the day and had to be NPO for a certain number of hours prior to surgery. Then he was in recovery for about 3 hours as well...so it was a long day!

The team

2009-01-22T19:15:00.006-06:00

We are surrounded by the absolute best professionals in more fields than we even knew existed! Who knew there was a team of people solely dedicated to "intestinal rehabilitation"? We will see them tomorrow....

Today Alex was seen by the colorectal surgeons (about 5 of them), gastroenterologists (2 of them in addition to the one we saw on Tuesday), a "TPN" team of medical nutritionists (4 of them), social workers (2), infectious disease docs (3), several radiologists to place the central line or "hickman, and a dietitian who works closely with patients with GI disease. Alex currently has a team of each discipline working on his case rather than a variety of individuals. The colorectal surgeons, GI docs, and nutritional therapists are all in the same clinic (digestive disease institute) and will team/staff on Alex all together. That means that all the doctors in the clinic will review Alex's case and together will come up with a treatment plan. It was emphasized that although Dr. Geisler is our primary point of contact, Alex is not "Dr. Geisler's" patient, but the "Cleveland Clinic's" patient and more specifically, a patient of the entire team at the Digestive Disease Institute. The hospital itself is staffed with excellent people. Everyone you see is extremely helpful (mostly because I'm usually wandering around lost), the nursing staff is so nice and attentive.

So What?

2009-01-22T18:55:00.006-06:00

Alex's Crohn's disease is very severe in his large intestine, meaning that he is going to need to be scheduled for major abdominal surgery. This surgery will include 1)removal of the entire remaining colon 2) construction of an end ileostomy 3) removal of the mesh. Even though the mesh is not currently infected, the risk of that being the case in the future is too great to leave it. 4) Reconstruction of the abdomen by the plastic surgeon.

When?
That being said, the number one goal is to not make a complicated situation worse. Since Alex just had surgery in November (to place the mesh), he will still have multiple adhesions/scar tissue. Performing the surgery now would be too big of a risk for loss of healthy small bowel. So...the surgery will be scheduled for about 4 months out.

Where?
The severity of the Crohn's paired with the complications of the mesh means that the surgery needs to be conducted by a team of the best of the best. That means we will come back up to Cleveland for surgery.

So what in the meantime?
Alex will be sent home on IV nutrition (TPN). He had a central line (long-term IV port) placed in his chest today that he will use for the administration at home. We saw the infectious disease doctor today (actually a team of three of them) and they do not feel like the mesh is infected at this time. That means he will most likely be sent home with oral antibiotics rather than IV ones. He will also be encouraged to eat and take in as much additional nutrition as possible. The GI doc has not yet decided exactly how his medication regimen will change, but it will likely be different as well.

When do we blow this Popsicle joint?
Turns out...they need a few days to cycle him through the TPN and monitor him. TPN here works a little differently than in KC in that they hang two different bags rather than one of milky stuff, separating out things like electrolytes from lipids. This has been proven to be easier on the liver and cause less complications. Looks like we won't be making our flight on Sat, but hope to be home early next week. We will hopefully finalize the actual day with the case manager and social worker tomorrow.

More good news...
The surgeon here is very pleased in the "compliance" and health of Alex's rectum. That means that he will plan on leaving the rectum in place with the plan of re-attaching it and the small intestine at a later date. That is not an option at this moment, but is something that he apparently feels is coming down the pike in the future. This is a key difference and worth every bit of coming to a center like this...to not exhaust options for future advances like this. He said several times that he feels Alex will be a good candidate for this and he expects his quality of life to benefit greatly from a future procedure such as this.

After all of this, Alex is still keeping his wonderful sense of humor. He refused to just smile for the picture...so here is his best "sick" face he could muster. The patch on his chest is where the ports go...

#2-CT enterography

2009-01-22T18:38:00.003-06:00

This is that specialized CT scan that is specific to the GI tract. This scan was completed yesterday morning, but we didn't get much information on the results until today.
Positives:
-the fluid collection behind the mesh has decreased since the last scan in KC. Very good news that could indicate that the mesh is not infected as previously thought.
-the small intestine was seen to be very minimally effected (which is fantastic news!)
-the anastomosis (where they hooked up the small to the large intestine in 2006) looked better than expected. We previously thought there may be a fistula here and that does not appear to be the case.

Negatives:
-the left side of the colon/large intestine is the most severely affected by inflammation

More good news than bad! Dr. Geisler needs to take a closer look at the CT, but trusts that this is the main info it will show us.

Round #1-yesterday's exam

2009-01-22T18:11:00.004-06:00

We are so sorry it has taken so long to update everyone. There have been doctors, social workers, dietitians, nurses and case managers in and out since 6:00, and most of them have visited with us more than once. We're going to post this one piece at a time since there is so much info with a "putting it all together" at the end...stay with us...

Here's what we found out yesterday during the examination under anesthesia, with a bit of clarification from further questioning today.
The positives:
-no abscesses were found that needed incision and drain placement
-the rectum for the most part looked very healthy (more on this to follow)
-Alex was only under for approximately 30 minutes, so the procedure was very short
-the doctor obtained biopsies from the lower 1/2 to 1/3 of colon to try and find an infectious complication (same things the previous bloodwork was looking at).

The negatives:
-Alex's Crohn's disease continues to be very severe. He has a small hole (fistula) in part of his lower large intestine, but it is draining on it's own and is not infected at this time.
-due to the severity of inflammation, the doctor did not feel that it was safe to scope into the upper part of the large intestine, so we had to rely on the CT for that alone.

In Recovery...

2009-01-21T17:38:00.006-06:00

Just a short post to let everyone know that Alex is out of surgery and has been in recovery for about an hour and a half now. He did great and I'm told he is "resting comfortably" with no pain. The doctor did not find any abscesses to drain, so it was strictly biopsies and "poking and prodding" as Dr. Geisler would put it. I am impatiently awaiting my name to be called to go be with him in recovery. We will stay in the hospital again tonight...and will post more about what the doctor's report later tonight.

Love you all...

Healing Services

2009-01-21T11:18:00.006-06:00

This is a post from yesterday that got interrupted when they took Alex down to the operating area early...

Wow! We are very impressed with the hospital here at the Cleveland Clinic! We even had a holistic nurse come by and discuss some healing therapies offered by the hospital. They offer Reiki (or healing touch), light massage, guided imagery, and aromatherapy. Every clergy member is trained in Reiki, which is a kind of energy medicine that allows the body to balance it's own energy...very cool! Donita has done some energy balancing with Alex in the past and he has really benefited from it, so he is looking forward to seeing Jeff (our assigned clergy member) later for a full Reiki treatment. The nurse gave us three aromatherapy scents (one for me and two for Alex)...peppermint, lavender, and pink grapefruit to use for revitalization, focus and relaxation.

Tins with the beeswax and scents in them.

Alex getting focused with the peppermint...

Also, family members also get access to all healing services on Mondays, Wednesdays and Fridays, so maybe tomorrow we can try that out as well! :0)

I thought this was interesting information on the energy healing...

http://my.clevelandclinic.org/services/energy_healing/hic_Energy_Healing.aspx

Now the fun stuff...

2009-01-20T20:37:00.008-06:00

Okay, so maybe this post should have preceded the last one... But, hey...turns out we don't have free wifi in the hotel, but we do in the hospital! See...already blessings from our inpatient stay! :)

Let's talk Cleveland.... We arrived just before midnight and by the time we picked up our awesome rental car (brand new Jeep Cherokee...black...and fantastic!) it was almost 1:00. We had heard from the pilot that there was a "light snow" in Cleveland...I guess that all depends on who is judging what is "light" and what is nearly a blizzard... :). I would obviously vote more on the blizzardy side. Here is a picture from the car on our way to the hotel last night...you decide. I was really trying to capture the gigantic icicles hanging from the houses, but the falling snow was catching the flash and stealing all the thunder... Seriously, I will get a shot of these mammoth icicles before we leave...they are incredible!

Alex and I awaiting our connecting flight in Chicago...

Alex waiting outside the Cleveland airport for our rental car shuttle...He looks so happy here, but see the video below for his true feelings!

Our hotel room is great, although we haven't spent much time there. A shuttle runs us anywhere we want to go around the Cleveland Clinic campus, which includes a whole 30 block area! Hopefully we will have more time to take pictures tomorrow of the buildings and snow. They both are amazingly beautiful. There are several gorgeous churches on the campus and around the area that we would like to visit and share with you all if we get a chance.

We truly do appreciate all the prayers and encouragement from everyone. It is so nice to know that we can keep all of our friends, family, and all our other prayer warriors updated, even if we are 1/2 a country away. We feel so very blessed to be here in Cleveland. The doctors are amazing and we know that we are in absolutely the best place we can be to get the most innovative and cutting-edge care for Alex, from experts in multiple disciplines. We are so blessed to have such amazing friends and families to support us through your prayers, hugs, blog comments, and encouraging words. Thank you just doesn't seem to be enough...

The facts (long...sorry)

2009-01-20T17:32:00.008-06:00

The Cleveland Clinic's Digestive Disease Center's reception area...

Alex had his appointments with both the GI doctor (Dr. McNally) and colorectal surgeon (Dr. Geisler) today. We got A LOT of information in the 3-4 hours that we spent between the two doctors, so here is a quick summary (believe it or not!) of what our immediate next steps are...

1. The GI doctor ordered about half a dozen or more blood tests to rule out infections that may be contributing to Alex's limited response to the aggressive drug treatments that have already been tried. The doctor was clear that the drug therapy was appropriate to what would have been standard plan of care. She stated that she is "very concerned" (as are we, so we were glad to have consensus on that) with the state of Alex's Crohn's disease, it's lack of response so far to medicinal management, as well as the fact that it is complicated by the placement of the mesh during the hernia repair that was completed in November.

2. The GI doc also ordered a specialized CT scan that specifically looks at the GI tract from about the stomach to the end. These CTs are not available everywhere and are very different from the previous CT scans Alex has had in the past. She really wanted us to consult with the colorectal surgeon, so we didn't get to ask many questions of her so that we could make it to our next appointment with the surgeon.

And we were off to the surgeon....
3. The surgeon recommended an examination under general anesthesia which he continually called "surgery" from that point on. This is where they will perform a colonoscopy while Alex is under sedation and would be able to make internal incisions and place drains in any perirectal abscesses that may exist. He also was very interested in seeing the results of the CT scan to see how affected the small intestine is, where exactly the disease is throughout the large intestine, and gain more information on any possible fistulas and abscesses.

4. The surgeon is also extremely concerned about our previous doctor's decision to place mesh in the abdomen to repair the hernias. In a case like Alex's where there is such chronic risk of infection in and around the abdomen due to the severity of his Crohn's, it was clearly not the best decision to place the foreign mesh at this time. He basically said the mesh would eventually have to be removed and a plastic surgeon would reconstruct at that point.

In order to expedite all of this, Alex is being admitted into the hospital for an inpatient stay with "surgery" planned for tomorrow morning (the colonoscopy with possible draining of abscesses under general anesthesia) and the CT sometime tomorrow as well. The surgeon said he would think Alex will be out of the hospital by tomorrow evening.

There was of course lots of discussion centered around the "what ifs" of what will result from these next procedures, but we will cross those bridges when we come to them. For now, the only things they are going to do surgically is make incisions and drain any abscesses found during tomorrow's colonoscopy/examination. The surgeon sounded hopeful that he would find some abscesses to drain, indicating that then there would at least be a solution to the problem...we can drain any infection and put more focus toward getting the inflammation under control. Best case scenario from his standpoint is that there is some type of infectious reason (i.e., virus like CMV) that Alex is not responding to the medication, we find that tomorrow and are able to treat it aggressively. Then he would have a much better chance of responding to medication management of the Crohn's vs. surgery at this time. He did say some sort of major abdominal surgery is likely for Alex at some point, however, this surgeon seemed to be much more cognizant of what is coming in current and future research, and trying to preserve as much as possible as to not exhaust those options in the future.

Home Sweet Home!

2009-01-17T17:55:00.004-06:00

Brett dropped Rusty off today so both him and Alex could get some snuggling in before we leave on Monday. :) It was hard to tell who missed who more :)

Last Night

2009-01-17T17:14:00.007-06:00

Our last night was very uneventful...thank goodness!

Here is Alex settling in to his last night of the movable hospital bed....YEA!

Carol finished FOUR quilts over the last couple of weeks! These two kept me warm and toasty on my cot (since Alex liked the temperature turned way down)...aren't they beautiful?

Below is Alex's last bag of TPN! Now it's just a waiting game until the nurse/doctors get all the paperwork finished and we're outta here!

Doggies and Dinners

2009-01-15T16:03:00.006-06:00

SMMC has dog visits every Tuesday. The first Tuesday Alex was here, he was visited by a German Shepherd. Last Tuesday it was a Samoyed named "Hawk". We loved him! They are the coolest dogs ever...aside from Rusty, of course. He was very white and very fluffy and so calm and relaxed. Hawk feel asleep in Alex's bed as soon as Alex started petting him behind his ears. If Rusty ever gets a brother or sister, this would be it! Here is a video so you can see them in action! http://animal.discovery.com/beyond/?playerId=203719213&categoryId=211217104&lineupId=37068541&titleId=73232715

This is how I've been passing time for the last week or so. Carol taught me how to crochet this one as well as the one I made in 2006 when Alex was in the hospital last. Now I have to wait until she gets off work to show me how to connect the next thing of yarn :). What would I do without her?

Here is Alex faking a smile in front of his "delicious" dinner. Chicken, again.... Don't worry, he had KFC for lunch and Carol is on her way to Planet Sub as we speak. I think "spoiled" is the word you are looking for ;), but he deserves it!

The progression...

2009-01-14T23:00:00.005-06:00

Here's a few pictures of the progression of Alex's weight loss over the last year or so. It went back and forth slightly until these last few months, as you can see...

http://s423.photobucket.com/albums/pp312/gar922/?albumview=slideshow

Prayer Quilt

2009-01-14T14:35:00.000-06:00

The ladies at New Covenant United Methodist made this beautiful prayer quilt below. We cannot say thank you enough for all of the prayers and support from everyone! Thank you, thank you, thank you!

Yum...steak and eggs

2009-01-14T14:22:00.001-06:00

Below is a pic of Alex's yummy "steak and eggs" in a bag...AKA his TPN. Yes, he is able to eat as well, but the doctor says there is no such thing as too many nutrients or calories at this point. We want to get him as bulked up as possible before we head off to Cleveland.

Hospital Hair

2009-01-14T14:10:00.000-06:00

Here's Alex in his beloved hospital bed. This one is much more comfortable than the last, thank goodness :). He looks 110% better after just a week's worth of IV nutrition (TPN) and a couple of blood transfusions...even with his hospital hair. ;)

Update

2009-01-13T16:15:00.000-06:00

Hello All! Alex and I wanted to start a site where everyone could get the updates on Alex easily and quickly. Hopefully this blog will help us pass along new information to all of our wonderful family and friends. We're not sure who knows what at this point, so here is a very short summary of what happened over the last week...

Alex went into the ER on Monday and was admitted to the hospital after CT and MRIs showed increased inflammation from his Crohn's disease. The GI doctors and colorectal surgeons are very concerned with the state that Alex's Crohn's is in right now. He has very severe inflammation, very low iron levels, and is severly malnurished due to his body trying to combat all of this and heal. So....the consensus has been to send us up to The Cleveland Clinic's Digestive Disease Institute which is supposed to be one of the top centers for inflammatory bowel disease in the world. We were so blessed to get an appointment very quickly...we will be leaving for Cleveland on Monday with an appointment on Tuesday (the 20th). We are staying until Sat. just in case they want to run any other tests later in the week. Hopefully from there we will know more about what the best way is to get the Crohn's under control. Until then, we are going to stay in the hospital (Shawnee Mission Medical Center) until the end of the week to get the most benefit from IV medications and nutrition before we go.

We are so very thankful for everyone's encouragement and prayers throughout all of this. This is a very brief explanation of what is going on, so please feel free to ask questions if something doesn't make sense. You get to the point where you forget what day it is, much less what information you have or haven't yet shared. :)