Long Time!

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

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

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

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

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

Home and Healing

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

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

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

Surgery...part of the healing process

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

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

Incision

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

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

Love to you all...

Baby Blog is Up

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

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

There's No Place Like Home

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

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

Not for the sensitive stomach

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

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

Pictures

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

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

Quick update

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

Fluids and We're Out!

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

Final Touches

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

Alex's happy slipper-socks :)

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

First bite of real food other than apple sauce!

The Waiting Game

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

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

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

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

Speed Racin' Recovery

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

Movin' on Up...

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

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


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


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

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

The Plan for now

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

Yum...Applesauce

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

New pants, too!

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

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

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

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

M53-19

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

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

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

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

On the Move x 2

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

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

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

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

Happy 4th!

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

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

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