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.
15 comments:
Lori
I'm so glad to hear that your appointments went well today, and that the doctors are getting a plan together for Caed. Give my wife and daughter a hug for me the next time you see them, and please give Tana a call if she can help you in anyway. Hope to see you and Caed when me and the kids fly up the weekend after next.
J. Free
Oh, Lori! What a day! But what a relief to maybe have an answer about his sleep issue. I know you guys are so tired, so I just want to thank you so much for blogging and letting us know exactly what's going on! We love you all so much and want to keep praying specifically for all of you!
Marilyn
so glad to hear things went so well and you are getting answers... you are a great nurse and will learn it all quickly! praying for all of you!
I was reading a webpage for Classical Christian Schools and found this prayer that the headmaster wrote. I was just amazed at how fitting it was for you all. Wanted to share it with you. He referred to Acts 7:9-10. With all the hardships Joseph had to face God was still there and so faithful to him. The headmaster challenges us to practice a little priciple called "praying scripturally". A prayer for our children modeled after Acts 7:9-10 would be something like this...
"Lord, my son will experience hardship and pain. Yet, God you are with him. Please rescue him from all his pain. If it were up to me alone, I would choose no pain for him. But, you are aware and your eye is on him. Please grant my son favor and wisdom in the sight of his medical team and family. Please give him the strength to be a servant-leader now as a child and when he becomes a man. Amen!" So... I prayed this for Caed and I pray for all the beautiful plans you have for this precious family. God Bless you all!
What great news to read that this team of doctors is on the ball and coming up with a plan to help Caed heal. I am so glad that they realize and are working on fixing the sleeping issue.
Dear Lord -
Please protect this family, give them the strength that they need during this time. Please be with the doctors, nurses and hospital staff as they work on healing Caed. Guide Lori as she learns all of the new information and how to help with Caed's new IV. Give her the strength that she will need after Todd & Reagan head back to Texas. Thank you Lord for already placing such wonderful people in their lives in NE. What a blessing they will be for Lori.
Lori, I am so happy ato hear that today went so well. You were blessed to have such a great team of Doctors and such. I am happy that they are getting a plan together. That is such Wonderful news! He is such a brave young man. I continue to pray for you all everyday.
God Bless and hugs,
Patti from Lusby, MD
I am so relieved that the doctors felt the urgency to work on the "sleep problem" first. We all knew something was going on. Hope Caed will wake on his own in the morning. What a blessing that he has this new team of doctors already coming up with some new ideas. I will be sending up special prayers for the scope procedure on Friday. A prayer for Caed to not feel any pain, will be calm and that the doctors will find an answer to the questions they need answered. Hope you all will get a peaceful night's sleep and that tomorrow will be a day filled with lots of fun at the zoo. I had Caleb from about 10:30 until about 7:30 tonight. He had a good day and we enjoyed playing and spoiling him! Good night and continued daily prayers are with you all. Give Reagan and Caed a big hug and kiss from Grammy. I am looking forward to hearing more tomorrow. Take care of each other and enjoy this week together. Love--Mom
Todd and Lori....So thankful that they found the "sleeping" problem and got to it in time! Know ya'll are exhausted, but am so glad that the doctors and staff are caring and compassionate with ya'll and Caed (and already have plans set for him). I thought about you all day yesterday as you travelled and got settled in...glad it went well. I especially thought of Caed while I was at the hospital having my thyroid SCAN and ultra sound done (it really hits home when you yourself are having tests done...of all he has had to go through and what a brave little trooper he is..and we can't even begin to comprehend all it has entailed). Hope tomorrow is less hectic and you will be able to take the kids to the zoo and have a great time together! I am praying each day and night, and will especially be praying for Caed on Friday (and ya'll)...that God will watch over Caed and he will be comforted and in no pain...that it will be a successful procedure. Sweet dreams tonight! Love you all....Aunt MeMe
Looking good!! Praying for ya!
Glad to hear everything is going good and so glad they figured out the sleeping problem. I hope you all get to go to the zoo today and that it will be a good time for all. Will be praying for all of you and especially you Lori with yet another task to fit into your already full day. Will continue to pray-pray-pray.
Love you all
Sheri
Sounds like the doctors in Omaha are getting right to the heart of things for Caed. I'm so excited for him and all of you. God is doing mighty things in all of this and I can't wait to see it all! Still praying and thinking about you often.
Sending my love...
In His love,
Carolyn O'Cain
So glad that they have started working on finding the solution to his sleeping issues. I know you are happy to get some answers already.
We'll pray for a smooth day and hopefully a trip to the zoo.
We all continue to lift you all up.
Love,
Steph
Lori,
I am so thankful to hear they may have found the culprit with his sleep issue - I know that has been an added stress. Just wanted to let you know we are reading and praying daily for you and for Caed's recovery. Bayleigh can't wait to cheer with Reagan again, I know it will be soon! We miss you, take care and keep the faith,
The Dean's
Chad, Brandi, Chayse and Bayleigh
So glad the sleep problem is beginning to being solved. Know this was scary and a major concern. Am praying for your mom and Mary Ruth in the days ahead - that they will feel a sense of peace and joy through all this.
I will hope and pray to see pictures of you all having fun at the zoo real soon! We are so excited for Caed. We have such high hopes for this team of doctors. Know that you and your family are continuously in our prayers.
The Raymond's, FBCC
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