Tue. 10/14 - update

Caed and I spent the morning at clinic while Reagan and my mom did school (and Caleb napped). We did get out a little this afternoon to make a trip to Wal-Mart. It has been cold and rainy here in the last few days. I think gone are the days we get to play at the park in shorts. ha! Winter comes quicker here than back in Tx. I have saved some 'fun indoor things' for this very reason. (movies, museums, etc....) Tonight we ate supper at Carol and Cordell's house. It was delicious (as usual). Please keep their daughter-n-law in your prayers. She has gone into labor and still has about 7 weeks left in the pregnancy. I know it is very hard on Carol and Cordell being so far away.


Here are the highlights from clinic this morning:

*we will continue with the weaning process off the IV fluids. This week he will only be on 300 ml over 6 hrs. (that's a 4 hr. decrease from this last week!) Hopefully, we're getting there........!!!!

*Caed maintained his weight. They were very pleased with this. I believe he is right at 37 lbs. (they do everything in kilograms) That should be about a 3 lb. increase since we've been here!

*start a new antibiotic this week. (Gentamicin) Caed has been on this one several times before as well. They are basically looking at it from a preventative standpoint. Many short gut kids are on antibiotic therapy for many years. He will be on it one week, off one week, and continue this for several weeks.

*begin Loperamide (Imodium) twice daily. They want him on the liquid version because he should absorb it better than the chewable pill. Please pray specifically for this. It gets very frustrating seeing no improvement in this area. Caed continues to have 6-9 watery stools daily. They have always said this would be a symptom since he is short gut, BUT for him to have fewer and firmer stools would mean HE IS IMPROVING GREATLY!!!!!!!!!!

*Caed's lab work has continued to look good. His CO2 level yesterday was 25! Thank you Lord for this answered prayer. (Just 2 months ago he was not waking up and we didn't know why.) However, they said his growth hormone level was a little low. This is not necessarily unusual for short gut kids, but since Caed also has always been so little, they want us to find a Pediatric Endocrinologist when we get home. They will then get Caed started on growth hormone therapy.

***also found out this morning, they figured from the UGI Caed has approx. 26 cm of small bowel left!! This was quite a shock for us. We have been given many numbers, but this was by far the shortest. The dr. reminded me again that it's not the length that's so important but rather how well it works. A child could have 100 cm and a bowel that doesn't work and then one have 20 cm and it does work. So, we don't need to get too bogged down with this number. The main reason they wanted to know the length was to know how hard they could push him.

Dr. Grant also talked briefly about a lengthening procedure they do. However, his bowel is not dilated enough for them to consider doing it right now. We definitely have mixed emotions here. On one hand....more bowel would be great! But, this would require another major surgery. I guess we will cross that bridge when / if we come to it.

All the drs. continued to talk about "how well Caed is doing!" Todd and I have definitely seen improvement in the month we have been here, but it's hard with our limited knowledge on Short Bowel Syndrome and also not knowing how he compares with other kids. We know that everyone is different, therefore it's kinda like comparing apples and oranges. But, they told me over and over how pleased they were with his progress. Dr. Grant said at one point she was very surprised Caed has made the amount of progress he has in this short period. Thank you God!! We pray it only continues.

Something else the Lord showed me today, or should I say reminded me... I feel like my prayer life has been preoccupied with 'other things' lately. I know that probably doesn't make sense seeing that we are literally going through all this right now. We are currently living in another state undergoing medical treatment. However, I was reminded today to not stop fervently praying for Caed's healing. How cool would it be if in a few months, they find his bowel has doubled or even tripled in length. For his stools to become "normal." For his central line and G-tube to be gone!! I DO BELIEVE God can do all that and more! However, what I do not know is if that is God's desire or will for Caed right now. He has a time and purpose for everything under the sun. I know that whatever He does choose to do with Caed (medically speaking) is RIGHT and PERFECT and GOOD!!

One day while Todd was here last, we were driving and Caed was asleep in the backseat. As we watched him, Todd made the comment, "I wonder why he had to go through all this...." We continue to ask this question even now months later, and I'm sure it will be a question we have forever. But, how comforting that the God of the Universe DOES KNOW! He loves Caed (and us) so much and desires to use this for our good and His glory. YES!! We want more than anything for Caed to be 'all well', but also trust Him and know He is in control!!!! I was a little burdened today when I left clinic. For some reason this obvious thought just came to me again. Caed will have to undergo many many more procedures, tests, blood work, medications for a very long time (possibly life). Sometimes I find myself thinking that when we leave Nebraska, all will be well. I know it will not. When I think of his future, I can easily get overwhelmed and burdened. BUT.....in the same breath, I am also very thankful for it. The simple fact that (Lord willing) Caed has a future. I am (indescribably) thankful that God chose to spare his life. I know many parents would do anything to have the endless dr. appointments, procedures, and medications if only to have their child alive and well again! I do not take this for granted. Sometimes I get down (and quite honestly.....jealous) of other parents who have "healthy" children. What I would give to have all my children well. BUT....I know there are also parents out there that would give anything for their child to simply be alive again. I know God knows best. He sees the big picture that we cannot. It is good for me to be reminded of HOW OVERLY BLESSED I am right now!!!! (even through this fiery trial) My God IS Faithful!!!!!!!!!