Surgery

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

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

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

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

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

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

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...