Tues. 9/16 - update

We made it through today! It started out early going to the IRP clinic. We were able to spend an hour and a half just talking with the team of drs. It was wonderful!! We asked lots of questions and they were patient and very clear with us. They said his labs this week looked excellent. They were so pleased with how he looked (much different than last week when they saw him). We will continue with another week of IV fluids at night and increase his tube feeding (consistency) and also rate. They want us to be back up to 90 cc. by next Tues. I will have an appt. with the dietitian tomorrow morning and we will go over in more detail what they want his diet to look like. Right now they are basically wanting us to stick with meat & potatoes. (and stay away from anything with lactose or fructose (fruits....which he loves). I will find out more tomorrow. I couldn't possibly relay ALL they talked to us about....it was a lot! But, we left there feeling really good and knowing Caed is in great hands. "Short gut" is their game!!!!

We then left the clinic (in the hospital) and went to Admissions and Endoscopy. After 2 hrs. of doing lots of waiting....they were finally ready for his procedure. Caed was doing well until we walked back into the endoscopy holding area. Even though he had never been to this particular place, he knew exactly what it was. He began whimpering a little, but overall was VERY brave! They did allow me to ride up on the gurney with him and I was right there talking /playing with him right up to when he fell off to sleep. The GI dr. said they would be doing an upper and lower endoscopy, colonoscopy, and then also take multiple biopsies of his sm. bowel/colon and a sample of the sm. bowel fluid. (mainly looking for bacterial overgrowth, I believe) Those results will be back in a couple of days. He told us this procedure should take about an hour. Well....about an hour and 1/2 later.....he finally was finished. I recognized the look on the GI dr.'s face (Dr. Higgins, I believe you had the same one not long ago....ha!). He said, "Why didn't you warn me about his abnormal anatomy?" (with a laugh) He told us he does this procedure all the time, but never had so much trouble getting the scope through. (primarily due to his abnormal stomach). Anyway, he calculated Caed had at least 30 cm of bowel from the top...and 30 cm from the bottom, but couldn't get all the way through. So, that's at least 60cm!!! He said everything looked really good inside. He was very pleased. Now, we will just wait for the results from the biopsies. Caed did not do so well waking up. This is how he has done every time when coming out of anesthesia. He was very angry, cried alot, and even did a bit of growling when someone came near him (ha!). It was hard, of course, but only lasted 10-15 minutes. He fell back asleep in my arms. In the meantime.....we found out there was a vacancy in the Leid and we could move in today. So, after Caed's procedure was done, Todd took Reagan back to the hotel and they packed and loaded everything again. After about an hour, they transported Caed and I up to our room.

It is very nice, and we are really pleased. It will be perfect for us! We are on the 6th floor. Just to give you an idea: the IRP clinic is in the same building - 2nd floor. The Leid is connected to the hospital, so when we go for labs, need to see our social worker, etc...we're HERE! Just hop on the elevator. There is a little "convenience store" also down the floor from the Leid and it is open about 20 hrs/ day. Laundry is right across the hall from our room. (thank you my dear sweet friends...the roll of quarters is definitely coming in handy!!!) It's kind of a weird feeling. When you are in the hallway or in the room, it all looks like a hotel room. BUT...yet you are in a hospital! I keep having the strange feeling Robert (one of our nurses at Covenant) will be coming in our room at all hours of the night!! ha! I took some pictures to give you a better idea of where we are going to be "living" for the next few weeks.

I forgot to mention a big part of our day. While we were waiting for Caed's procedure, Carol walks up!! She was such a God-send today!! Thank you so much!! Let's just say God answered our prayers as far as Reagan was concerned. Carol sat with her in the waiting room the whole time so Todd and I could be with Caed!! They played games and passed the time with ease. Just the look on Reagan's face told me she really loves Carol! Thank you for stepping in and being her "fill-in Grandma" today! You have NO idea how much you helped out and really blessed us. This was not an easy day for us, and yet it was so comforting just having someone else to talk to while we waited. Thank you from the bottom of our hearts!!

The rest of the day went ok. Caed had a bad headache and also some stomach pains after the procedure. They put a bag on the end of his G-tube and allowed it to drain for several hours. (fluids and also gas) This really helped! Finally around 6:30 or so, he began "coming out" of it, and acting like his normal self. We went out to eat and he did just great. Every once in awhile he would complain his tummy was hurting, but it never lasted very long.

Everyone is now in bed. We have to get up VERY early (5:00am) to get Todd and Reagan off to the airport. Pray all goes well there. We will sure miss them!! Especially Caed......I know it's going to be really different now with his "best buddy" gone. Pray for Mommy to develop some creativity (quick!).

Thank you all again for your prayers today. It was a big day and parts of it were very difficult, but as I sit here and think back over it all.....I can't help but see how God was in every single detail. He answered so many of my concerns, and I know that He isn't going anywhere now. We will make it through this!!!!!!!!!!!!


Caed beginning to feel better in his
"new" bed



the little sitting room (first thing you
see when you walk in)



other side of sitting room/kitchen (we do have a
microwave and frig! what else do you need??)



Bedroom (with a great view by the way!)



bedroom (I'm loving all the storage! there is tons!
finally I can officially stop living out of my suitcase)

*there is also a good size bathroom


Our New Address:
Lori Hollingsworth/6719
Leid Transplant Center - Nebraska House
987600 Nebraska Medical Center
Omaha, NE 68198-7600