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
Tuesday, January 13, 2009
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. :)