Well, I started out with labs this morning which ended up good. His levels are all good. Prograf in it's range. Creatinine still at 0.5. His phosphorus is kindof high, so we are discontinuing the sodium phosphorus. We need to get more sodium in thru his mouth because his sodium is a little low. So MORE popcorn and chips! I wish I had that diet! :-)
Today while I was changing the tape on Daniel's NG Tube (that is the feeding tube taped to his face) he was screaming and fighting and we were just having a GREAT old time! Anyhow, he moved one way and the NG tube went the other! So we made a trek up to the doctor's office to get it put back in. I refuse to do it! I kindof told Amy (our dear nurse who is probably going to ask for me to be reassigned to someone else!) that I refused to do it if it meant I would take him to the ER! I was just having a bad day and later apologized when it was all over. But him and I both cried during the whole thing! I just really don't like the NG tube! And watching them shove that thing down his nose solidified it. YES! I know it doesn't really hurt him, but I hate doing things to him that cause him stress! Anyhow, then waited for 3 hours for him to pee in his urine bag....never happened so I took the bag off. I'll bag him before bedtime! So we came back, ate and played in the play room! He loves me now! Life is good! We are about to go have popcorn and grape Kool-aid. Our bedtime snack!
Footnote: Had a good bedtime snack. Came back....got Daniel all ready for bed....went to hook him up to the feeding tube machine....NEW NG TUBE DOESN'T FIT THE BAGS!!!! The same company sent me the tube and the bags! UGH! So I called the on call ped. nephrologist and she said to give the meds via the NG tube (I have a medicine syringe to stick those in) and then I have to make sure he gets liquids thru the night! I am so exhausted I am going to have to set an alarm because unless he wakes me up (which he does that often anyhow) I know I won't wake up on my own! So we will be getting ANOTHER NG tube put in tomorrow.....I am sure!
8 hours ago
5 comments:
Dear Amy:
I read all of your updates and keep you in my prayers every day. Having gone through Chuck's heart transplant with him, I wish that I had kept a journal of the events--both good and bad--that led us to his amazing outcome. I admire you for your strength and your positive attitude. Please know how much I love you and your sweet family. Give Daniel a big hug for me. May all of you continue to be blessed through this journey.
Love, Dianne
Hang in there Amy! We're all pulling for you! Love you! ;)
I can relate to your dislike of that NG tube business. They're awful! I hated inserting it in Katelyn too and don't blame you for finding someone else to do it! Good Luck Amy! You're in our prayers.
I hope today is a better day. I think you are amazing to have such a positive attitude all the time. Sometimes it is okay to have a bad day. I wish I were there to give you a minutes break.
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