Saturday Night Update

written on FEBRUARY 1, 2015

We got Matthew’s test results back… he is good!!! yay!! Four days of blood draws… four days of Loma Linda trips there and back… an E.R. visit… and some changes in his dialysis- Matthew is good! Thank God!

This past Wednesday (I don’t remember if I mentioned it before) but labs were drawn and his potassium was waaayyyyy too low. it was so low it was actually considered “life-threatening”. His kidney doctors and nurses were literally across the hall contemplating keeping him and admitting him to the hospital. But thanks to our nurse and her trust in us… we got to bring Matthew home.

He was put on a strict potassium dosage regime and we shot him up with a bunch of potassium…lol.. and just sat and prayed. What his nurse mentioned but didn’t want to go into details about was that Matthew’s potassium was so low it could cause him to have heart failure or arrhythmia (stupid me, I googled.) Dialysis was also cancelled this night! We have been told from the beginning that dialysis is IMPERATIVE. So missing one day for me… I was in MAMA SOLDIER mode… I checked and re-checked his temperature.. his weight… his Blood pressure.. but I tried my best to hide it. I didn’t want to freak out on my husband..lol. I was literally in silent prayer mode. Talking to God all day.

I can see Matthew start retaining a lot of fluid..one whole pound to be exact!! I had a few flashbacks from the NICU when he had retained four pounds of fluid and I was remembering how hard it was for him to lsoe all that fluid… oy!! There are times when I try not think about the NICU days…

Anywho… Daddy took him to go get labs re-checked and potassium was better. Doctors still thought about keeping him but again, trusted us to take care of him and give him the meds we needed. And we did. We were able to start dialysis (THANK GOD!) But we only did half the dwells and half the dwell times. Doctor didn’t want to keep pulling off potassium but knew Matthew can’t go long without dialysis… so we all just prayed for the best.

Today it was my turn to take Matthew for labs. Because it was the weekend, we had to go to the Emergency Room at Loma Linda. They were all expecting us because our nurse had called everybody and told them that we were coming. Our nephrologist was also aware that we were there so he kind of made everyone chop-chop …lol. We were there for only about 4 hours… which is good considering it takes about an hour for labs to be done…

Matthew was a trooper. He didn’t cry much… only when the nurses started poking at him. lol.. but in the end.. labs were good.

This coming Tuesday we take Matthew to his pediatrician to get his head measured for his helmet shaper. Being in the NICU for so long, he kind of got a little lop-sided. Plus for some reason he always looked to the right… I was told that babies sometimes do that.. they get to liking a certain direction and just always look that way. Weird. Follow up with neurology comes in a couple months.

On Wednesday, Matthew will finally have his first Physical Therapy session. I am both excited and terrified!! haha … excited because he doesn’t have much strength in his legs and we hope this helps him to start standing and hope he gets better at tummy time… terrified because well, he comes with attachments, and I am just terrified of him rolling around and pulling on something.. lol.. but I know it is good for him and he needs it. We actually just purchased a belly band to help tuck in all his attachments..lts pretty cool the stuff people make!! I Love Etsy! =)

I am praying that starting tomorrow, Sunday, it is the start of a good week. I really really really really really really need Matthew to get stable. At least, a little bit. He has been so up and down I can’t seem to leave the house… but I have a feeling it will all be good!! We are staying positive.