Friday, August 7, 2009
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...
Tuesday, August 4, 2009
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.
Wednesday, July 29, 2009
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...
Sunday, July 26, 2009
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! :)
Tuesday, July 21, 2009
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 :).
Tuesday, July 14, 2009
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.
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.
Sunday, July 12, 2009
Thursday, July 9, 2009
First bite of real food other than apple sauce!
Wednesday, July 8, 2009
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 :)
Tuesday, July 7, 2009
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. :) :) :)
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.
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...
Monday, July 6, 2009
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!
Sunday, July 5, 2009
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 :).
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.
Saturday, July 4, 2009
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 :)
Friday, July 3, 2009
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!
Thursday, July 2, 2009
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.
Wednesday, July 1, 2009
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.
Tuesday, June 30, 2009
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!
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.
Thursday, May 28, 2009
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....
Wednesday, March 25, 2009
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
Tuesday, February 10, 2009
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.
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! :)
Friday, January 30, 2009
God is good...all the time. ;)
Monday, January 26, 2009
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!
Sunday, January 25, 2009
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.
Saturday, January 24, 2009
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.
Friday, January 23, 2009
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!
Thursday, January 22, 2009
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!
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.
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.
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...
-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.
-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.
Here's what we found out yesterday during the examination under anesthesia, with a bit of clarification from further questioning today.
-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).
-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.
Wednesday, January 21, 2009
Love you all...
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...
Tuesday, January 20, 2009
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.
Saturday, January 17, 2009
Here is Alex settling in to his last night of the movable hospital bed....YEA!
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!
Thursday, January 15, 2009
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!
Wednesday, January 14, 2009