Thur. 9/11 - update

Caed's CO2 level was up to 23 today! We're gradually getting there. We will go back in for labs again in the morning. (then, he'll have a break for 2 days) He had another good day as far as the "sleeping issue" is concerned. He seems back to "normal" with that part at least. The IV fluids sure seem to be helping out. We also have had to add Sodium Bicarbonate to his G-feeds 3x/daily.

We ran a few errands today (found that Target!), and then we decided since it was raining to let the kids play at the hotel pool. Simple enough, right? Well, for us (and especially Caed) this was a VERY BIG day! Caed has not been able to get in a pool ever since this happened 7 mos. ago. He cannot get his central line wet. HOWEVER.....this pool was absolutely perfect for Caed! It had a really shallow end, and he was able to play, wade, splash.....just the normal things a small child would do in water.

Tana.....you talked in your blog about what a big moment it was for you to just be able to buy Kensley a pair of baby shoes. Well, we kinda had a moment like that ourselves today. To everyone else around at the pool all they saw was a little boy playing in the water. Not to us! To have seen the look on Caed's face when I pulled his swimsuit out of the suitcase was priceless. You see, all summer he has had to sit and watch Reagan and all the other kids swim and play in the pool. (at least a couple of times every week) You would have thought it was Christmas for him today. He was elated! Just simply wearing a swimsuit and being able to splash was a big moment for Caed. Please look beyond the simple pictures of a little boy in a pool. Today was a huge day for him! Thank you God for reminding us of the simple things (like Tana referred to with Kensley........www.faithfulandfree.blogspot.com) Thank you for allowing Caed to have fun and do something as simple as getting wet. In this little boy's mind, he was really swimming today!!!

After the big swim, we were invited to Cordell and Carol's house (20 min. away) for supper. This is a couple we just met on Monday. They have truly taken us under their wing and blessed us tremendously!! Caed and Daddy played a few games of ping-pong, and Reagan enjoyed the food! (she kept eating and eating) We are looking forward to more good times with our "new" friends. Thank you both. You are such wonderful hosts, and we enjoyed our evening out (not to mention a delicious home-cooked meal)!! We thank God for putting you into our lives during this time.

Tomorrow will include heading back to hospital for labs again. Thank you all for your continued prayers!



Caed's 1st time in the pool (in a year!)






Feeding the dolphins

Pool video

Wed. 9/10 - update (zoo)

Our day began again at the hospital. They drew labs, and Caed's CO2 level was up to 20! (normal is 24). They said yesterday after we left the hospital, his level had only gone up to 12. But, after being on a full night of fluids, it is now much better. Caed woke up like normal this morning....no problems.

After we left the hospital, we took the kids to the Omaha Zoo. We had heard so many good things about this zoo. It's all true! It was definitely the best one Todd or I had either been to. Amazing! You almost need 2 days to really get through it all. There were a few exhibits we didn't get to. The kids loved it! We rented a little wagon for Caed to ride in when he got tired. His backpack is SO heavy now! (with 2 bags + 2 pumps!) Hopefully that will begin lessening.
Reagan and Caed had a full, fun day, but were exhausted when we left. Caed slept about an hour when we got back.

Tomorrow and Fri. we go back to the hospital for more labs. I talked quite a bit with our nurse coordinator this afternoon. She said they are wanting to decrease his fluid (IV) intake to 800 ml/14 hrs. We are very glad to hear that. Should give him about a 10 hr. window to not be hooked up to that pump. (at least it will lighten his load a bit). We will increase his G-feeds by 5ml each day. (2 in the am, and then 3 in the pm) Right now he is at 50cc, and they are still continuous. (so he now has the backpack ALL the time, even while sleeping....only it sits by his bedside at night). Caed's scope has been scheduled for Tues. at 1:30. She said they were not able to get him in on Fri. like they originally hoped.

Overall, Caed had a much better day. We could definitely tell a difference with his energy level. We will be in contact with the drs. each day. They want to get him "stabilized" before taking more action. (primarily the CO2 level)

Not sure what we have planned for tomorrow other than dr. stuff. Thanks for your prayers for us today. We had a fun one! It was sure good for our family.



In the Desert Dome



Walking the bridge in the rainforest
(this was the coolest!!!!)



Caed found him a friend in the aquarium



Another turtle friend

Animals 1

Animals 2

zoo pics

2 pooped out zoo-goers!

Tues. 9/9 - update

Well.....our 2 appts. turned into a 7 hr. hospital stay. First off, we went to the clinic to draw labs, and then met with our team of IRP (intestinal rehabilitation program) drs. There were 5-7 on the team, and they spent 2 hrs. with us. They were wonderful! Right now they have set a short term plan in place.

I guess I should back up with Caed's sleeping. I told you about yesterday and also him sleeping through dinner. This morning was no different. We had lots of difficulty again waking him up. We got him in the car, but he fell back asleep. He continued this throughout most of the morning. As we were meeting with the drs., his labs came back and they were very concerned with his CO2 level. Dr. Higgins (Lubbock GI) has also been concerned with it and had been watching it these last couple of weeks in particular. His level was 11 (normal is 24!). They said with it this low, it would cause the drowsiness, slurred speech, etc... (everything we have been seeing the past month). One dr. said he was about 3 points away from seizures, so they did not want to wait and wanted Caed to receive a bolus (IV fluids) immediately. So, we headed up to the treatment center and spent the next 4 hrs. there with Caed "hooked up." As the time passed, we began seeing a change in him. (this was all very familiar....this is what happened when Caed spent the night in the hospital 2 weeks ago). I believe they said the low CO2 levels could be caused from all the diarrhea. ??? (will ask about that again tomorrow)

They want Caed to be on IV fluids continually for awhile. Which means another pump and bag!! They lowered his G-feedings to 45cc. (from 90) They also want to do a scope on Friday. We will find out more later, but I believe they will be looking from both directions. The transplant surgeon said she wanted to take a small piece of the duodenum (first part of sm. intestine) and run some tests on it. Watching mainly for bacterial overgrowth. From that point.....they will then come up with a plan. They did not feel at this time he needs TPN. Praise the Lord! His weight was also 35 lbs. today!!! I was shocked!

Overall it was a tough day for him. Especially before the fluids began. You could just tell he didn't feel well. They said the low CO2 level can cause you to feel like you have a hangover. Again, totally explains why he has been acting this way for the last several weeks.

We talked with his dietitian briefly today. (30 min.) She is gathering a packet together for us, so we'll know more next Tues. when we see her again. However, she gave some interesting suggestions. I am looking forward to learning more!

We ran into Tana and Kensley today at the hospital. Kensley looked terrific!! Tana said she was gaining and just doing those "normal" baby things more now. (cooing, smiling, laughing, etc...) She is such a beautiful little girl! I'm sure we will get together more with them soon. Today was a little hectic for us.

Tomorrow we have to head back to the hosp. to draw labs again. They want to do this everyday. Hopefully.....it will not take long, and turn into 7 hrs. like today! Our tentative plan is to take the kids to the zoo. We have heard it is such a good one!! So, please pray we are able to go!

Thank you for your prayers! We have felt them. Everyone we ran into today (drs., nurses, etc..) were very friendly and so good to Caed. Also please pray for me. Now with Caed having pump #2, there is a lot of NEW stuff for me to learn. Some of the connectors they use (for his central line) are a little different. I'm a bit overwhelmed, but know the more I do it, the easier it'll be. Hopefully he won't have to have it very long. (BUT.....Caed loved the new backpack they sent over. It's red & black!! We told him they knew he loved Texas Tech.)

**btw......Dr. Higgins, Caed asked us tonight if YOU lived here?? ha! We told him no, just "your friends" at the hospital.


Which one is the patient?



Brother/sisterly love!!



They found one of the playrooms.



Waterfall in the "healing garden" outside
the transplant center



All the supplies that we brought home from the
hospital (minus Caed's backpack on the right). His
new backpack is just like his old one...just different
colors. Both pumps and fluid bags will fit in one.
This boy is going to have some "big" muscles
when this is over with all the weight he's having
to carry.