I missed a day of blogging and in my mind those two days have blended together so here is a summary of both.
Day 5 and 6 had zero issues. R did great tolerating the real food blends formula through his gtube. At home I blend his meals and here blending is not an option. Therefore, I had to find an alternative or they would be putting him back on that awful formula. Thankfully, I found real food blends. RFB is exactly what it sounds like. It is real food blending up to g tube bolus feeding consistency. It comes in a pouch and honestly looked like soft dogfood ha. I usually add prune juice or protein milk to it to then it down even more. I was so thankful we were able to order this and use it in the hospital.
R's appetite by mouth is very minimal. He is mainly eating chips and occasionally fruit. I have been utilizing his tubie 2x daily and more for liquid intake.
We have been doing treatments 3x daily both nebulized and cpt. His weight is ranging from 12.2-12.9. I blame this fluctuation on not being at home with out real blender eating a variaton of foods. But oh well we can work on that later.
His cough is still present but is contuining to break up and gradually be coughed up/out.
On Monday they took more labs to check the antibiotics in his system and his vitamins and iron levels. Since we have the picc line we are able to pull some of the blood directly from the line, the other requires a finger prick and lots of squeezing. R has learned what blood is and informs everyone that he is bleeding.
The staff is impressed by his vocabulary, ball skills, and his ability to do the aerobika properly. He loves the nurses and staff here, they treat him like family. (Most of them anyway, there is always a few sour apples in the bag) The floor is still full of CF people battling the same issues we are. Everytime I leave our room I hear the sound of the vest and I'm reminded we are not alone. I had the opportunity to share Christ's love with a fellow CF mom and that was a huge blessing. Her daughter is really struggling and I kept trying to encourage the mom to find hope in christ. Please pray with me for that family. For every family here. Hospital life has its challenges whether they be giving your child away to a surgeon, being awoken all hours of the night, or going to eat your leftovers from the hospital fridge to find that someone already ate them. Each day is different and requires something more from you here.
But even here, amiss the beeps of IV's that nurses have forgotten to turn off, amiss the screaming of a child who is getting blood drawn, amiss the shaking of chests during a vest treatment, amiss it all Christ Remains and He Is Good.
Always find the beauty, and I'd you cannot be it. Create it.