Home again!

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!

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

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...

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

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

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...

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...

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.

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...

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

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?

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

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

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...

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

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...

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)

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!

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

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

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...

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

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

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

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

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. :)