Weekends at the hospital are way more relaxed vs weekdays. On the weekends, majority of specialty doctors are on call but do not make rounds and the overall hospital staff is lower.
R did good on Saturday and Sunday. He didn't have any issues and we were able to up his feeds to where they needed to be once we got home. (50cc over an hour time for 10 hours.) He didn't eat much food by mouth and his only liquid intake was liquid gold (aka momma milk). His gtube site continued to drain but stayed in the healthy range. It wasn't red or swollen at all excluding one little spot to the right of the tubie which has been swollen and tender ever since the procedure. I informed the nurses and his pulmonolgist of the spot and neither team appeared to be overly concerned. I, on the other hand, will keep a very close eye on it.
R enjoyed long baths both days and even took a lap around the halls. He worked very hard during CPT and breathing treatments and is doing better with his gtube. He enjoys helping the nurses push the medicine thru and hook up all the lines. He does not enjoy cleaning it or having it touched though. I am so proud of him and how much better he is doing with all the poking at prodding.
Around 4am on Sunday R went NPO to prep for a barium swallow study on Monday morning. They want to rule out that he doesn't have any swallowing issues which would be contributing to his lack of appetite. (I do not believe that he has any swallowing issues, like I have preached many times before I believe that he simply isn't hungry! But hey, what do I know?)
Saturday was a super easy laid back day. We didn't have any issues and the day flew by. I am so thankful that R and I got to spend loads of one on one time together. He learned so much during his stay like many of his shapes, how to do puzzles, a few colors, and how to hide successfully. He really enjoyed all the movies like Nemo, Finding Dorie, Cars 2, Toy Story 3, Inside Out, The Good Dinosaur, Peppa Pig, and of course Paw Patrol. We did lots of coloring and throwing balls too. We had some super awesome nurses who became friends. I am so thankful for such kind, loving, and knowledgeable hands taking care of my tiny human.
Side note, at the hospital R used reliazorb which worked out great. We didn't have any malabsorption issues or any issues with it connecting it all the tubing. I have read many awesome things about it and was so thankful to get to try it out first hand. It is relatively new so it is still hard to get through insurance. We are going to work hard to get it since it worked so well with us. I plan to make a video on FB live soon talking all about the gtube and I will make sure to talk about how spectacular this product is.
On Monday, we have the barium swallow study and they want to drain his finger of blood again to retest his anemia levels. We know he is really anemic and they want to determine if he needs an iron supplement. The plan is to go home on Monday since he tolerated the full 50 feed. Woohoo!