We woke up this morning at 5, loaded the suitcases and kids in the car, and off we headed to the airport. Reagan was pretty upset when I left her. She cried and cried. Todd said she continued for about 30-45 minutes. Finally once they boarded the plane, she was "all better." I think she slept most of the flight to Dallas. Our friend Kendall, who works for Southwest, met them there at Love Field. She had some goodies there for Reagan, and then off the 2 of them flew to Lubbock. We CANNOT begin to thank her enough for what she did for us today. You talk about doing someone a favor.......wow! It sure made it easier on Todd not having to fly to Dallas twice (and then get ready for Wed. night youth!). Thank you SO VERY MUCH Kendall! You were our God-send today!!!
I had an appt. with our dietitian this morning to go over in detail Caed's diet. It was very good, and I was pretty shocked at what they are allowing him to eat. She gave me 2 big packets of material to read over. In a nut shell.....they want him staying away from sugar (also the natural kind found in fruits), and high fat foods. She stressed again about the meat/potatoes. Also because of the portion of bowel Caed is missing (ileum), she said he may crave salty foods, and that was ok. (even Doritos, etc.....just in moderation) If he wants fruit, he needs to have it with a meal (protein), not just by itself. I got TONS of good info today. Again, too much to relay on the blog. I'm sure it'll take a while for me to really understand it all, and get the knack to his diet. However, I was encouraged because it doesn't seem too different from what he is already doing (give or take a few things).
One interesting tidbit.....normal children (5+) and adults have approximately 500 cm of small bowel (~15 feet) and 200 cm of large (~6 feet). After the scope yesterday, the dr. said he measured 30 cm. from top, and 30 cm. from bottom, so ......Caed has around 60! (small bowel) He did lose the value that connects sm. and large intestines (ileum) and about 30% of colon. The main part that Caed lost (jejunum) is the site that absorbs the nutrients from food. That is why malabsorption has continued to be such an issue with him. They are also really watching his hydration levels. Because he is still stooling quite a bit every day, that's why his CO2 level was dropping like it was the last month or so. (not waking up) That in turn is the reason for having him on IV fluids each night. Right now, this is the main concern they have with Caed (hydration). (obviously there are many others, but this is what's in the spotlight currently)
Tonight Caed has started his "new feedings." The concentration of the formula is higher and we have also added normal saline to the mix. Hopefully the night will go well and he will tolerate this change fine! (up to 80 cc. now)
The remainder of our day was fairly uneventful. We went to Target and then just stayed here in our room the rest of the night. He did want to go for a walk, so we got out a few hrs. ago and walked through the halls of the hospital. (sure is quiet this time of night) We also played a little soccer in our room, of course you can guess who won. He and Reagan talked at least 3-4 times today. He sure does miss her. He has made many comments to me about us going home in 4 days........! Not sure where he got that number, but for now I just say, "oh, I think it might be closer to 10." He really doesn't have a concept for time, and I think it would be pretty overwhelming if I told him "the truth." However, even I don't know for sure how long it will be. I'm really thinking it will for sure be through the whole month of Sept though.
Well, I really need to get to bed. I think I only got about 4 hrs. of sleep last night. I am very tired!! Tomorrow all we really have planned is a lab draw. We might try to go find the Children's Museum or a park or something. The weather has been absolutely beautiful this week.
5:45 am! This was the best way I
could think to get Caed down to the car! ha!
passing the time with some computer
games. (thanks Leanne!)
Our "home"
(Lied Transplant Center)
eating supper on the windowsill
4 comments:
Lori,
We are praying for your family everyday. I cannot imagine how hard it is to be so spread out. I will continue to pray for all of you in this time. I pray time will go by fast and your trip will be productive.
Jennifer Carroll
Hi Lori and Caed....Sure do miss you guys....and I know how hard it was today saying goodbye. I pray that time will pass more quickly than you think and that you will find more new things to see and do while the weather is so pretty....Its been great here, too, and I love this time of the year. Sounds like the doctors are really involved and getting new plans going for Caed. Glad the scope went well yesterday (other than the waking part)...praying the sample comes back good and that they can continue with new treatments for Caed soon....Sounds like so much new information to learn for you, but I know it will be "old hat" for you soon....Glad that Caed's new diet isn't too much different and that he is not restricted from alot of foods. Leann, Macy and I got to play with Caleb this week while Grammy had him....his two new "eye teeth" are coming in good, with lots of drooling and help from that tongue! ha Can't do a thing without it! He's really "rocking back and forth" and ready to crawl. Hope ya'll have a good day tomorrow and can find some new things to see. I love you....MeMe
We love you guys. Sounds like alot of new info from the dietician. Please keep the world informed! Praying for you!
Lori, I can really sense the grace of God carrying you through your days. He is SO good! How wonderful that you got so much good information about Caed's diet. I know it will benefit him greatly as he follows it. God is watching over ALL of you and I know He is doing mighty things in and through each of you. Continuing to pray.
Sending my love to you all.
In His love,
Carolyn O'Cain
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