Thank you for the prayers!
Saturday, June 21, 2014
We are home now after 4 days and lots of tests. I'm on overload (we all are) so I'm going to process and get more test results before I blog again and explain some stuff. Enjoying being home and sleeping in our own beds. Dave will be here for good on Monday evening and we can't wait!
Thursday, June 19, 2014
I've always said (like most parents) that if I could take my kids place and do all the stuff they have to, all the pain and procedures, I would. Today, was that day.
Today started with a glucose tolerance test. K had blood drawn, then had to drink this sweet orange stuff and then have blood drawn at 1 hour and 2 hours. It's the same thing we do when pregnant.
The results of that are that K has Cystic Fibrosis related diabetes (CFRD). It's at a place right now where we will test his sugar with a monitor (finger pricks) and eliminate juice and soda and then learn about carbs and things like that. We will also test his sugars with certain foods and see how he does and if his body responds with too high sugars, than we know to limit or avoid. CFRD is tricky because he still needs calories. Right now, he is struggling with his weight so we will just have some adjustments to make and a new plan after all these tests that also include monitoring his sugar. If you want more info on CFRD please go to www.cff.org and look for info on their website.
It could stay like this forever with just diet adjustments or he could become insulin dependent, we just don't know (just like all areas of CF).
Just like the natural enzymes in his body don't work right and release because of mucus, it's the same for insulin because of mucus which is all a CF thing.
It's just another hurdle in this CF journey.
Tomorrow K has 3 procedures at 7am. He had to drink more gross stuff today to "clean himself out" and will have a colonoscopy, endoscopy, and a Bronchoscopy (for his lungs). After all those, we are hoping we have a better picture of what his body is dealing with and go from there. We are starting the finger pricks tonight and I will be educated tomorrow.
We hope that we can go home tomorrow after all his tests but it depends on what the docs say after the tests.
Please pray for us. This is a lot. Overwhelming. Sad. Difficult. Another thing to deal with. CF sucks. No way around that. K and I are processing it and it's hard.
Please pray for a clear mind for me as I have lots of info and new stuff coming at me. Please pray for K as the patient, it stinks. Pray for H as she feels all our stress and emotion. Pray for Dave as he is still in Oklahoma and is hard on him as he wants to be here.
Pray that whatever the results of tomorrow's tests are, we can process and deal with. Pray for our new routines and new normal.
Thank you for lifting us up and interceding for us. It means more than you'll know.
For now we trust in The Lord with all our hearts and lean not on our own understanding, in all our ways, we acknowledge Him and He makes our paths straight. We know the plans He has for us are to prosper us and not harm us and we know we have a future and a hope in Christ.
Wednesday, June 18, 2014
Today Kaleb had an upper GI. This is a test where he drinks barium and they do a series of X-rays every 30 minutes to track the movement through his intestines and stomach.
After 8 hours, it had finally moved through enough that he was able to eat. He was NPO from last night at 9pm until 4:30pm today. That was rough.
He will be NPO again tonight at midnight and then have the long glucose test tomorrow morning at 8am testing for CF related diabetes. He will have blood drawn, then drink a sweet drink, and hour later blood drawn again and then again 2 hours later. His blood sugars will be checked all along the way.
After that, he will begin a "clean out" with miralax. This is a busy stay. On Friday, he will have a colonoscopy, endoscopy, and Bronchoscopy done all at the same time while he is "under". With all these tests, we will have a better idea and picture of where he is to begin a new treatment plan and hopefully start solving his gut issues and start putting on weight. Once we can put on weight, we are hoping to see an improvement in his lung function and lung health.
We are grateful for all these tests and a team ready to help us figure some things out. We are comforted that this move was a good decision and good for K and his overall health.
Please pray for all the tests, answers, K and his comfort and patience, the docs and a clear plan of action and getting K more healthy. We hope to go home Friday after those 3 tests as they haven't said any other things they want to test for.
So far we have been impressed by all the docs, nurses, staff and team at CHOC and have had a positive experience. Everyone here is so nice and great with K.
Thank you for joining us in prayer!
Tuesday, June 17, 2014
We went to our first CF appointment here at CHOC and after meeting with the social worker, nutritionist, GI doc, pulmonologist, nurse and respiratory therapist, it was decided he needed to be admitted to run a series of tests. Over the next 2-3 days he will have the following tests and procedures done
-Bronchoscopy (get a good sampling of sputum in his lungs and see what his lungs look like
-glucose test to check for CF diabetes
-test for celiac and Chron's
-X-rays of lungs and digestive system
Because K is very underweight but eating, they want to make sure they know if there is anything else going on so we are getting a good comprehensive view of his lungs and GI. His lung function is at 50% which is about what he was at last month so they aren't going to treat his lungs right now. So, it's supposed to be a short stay (2-3 days) and we don't have to go home on IVs. We are hoping to get lots of answers from these next few days so we know how to better treat K. Praying this will help discover why he isn't gaining weight and why his tummy hurts so much.
I have my cell phone and will check my FB and email if you need me.
Please call or ask local folks first of you want to visit.
Please keep us in your prayers and for K and all the tests. Pray we get answers and a plan of action. Pray for Dave as he is still in Oklahoma and this is hard on him to be away.
Pray for Hannah as we will be apart from her but she is with my parents (huge blessing).
We appreciate your prayers! I'll update here as we have new info and results!
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