Thursday, January 19, 2017

Saturday 14 & Sunday 15 Jan. '17

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 Vitals:
O2 98%
Weight 12k
Heart 111

Sunday Vitals:
O2 99%
Weight 11.5K
Heart 108

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.

On Saturday, R was so good that he got to go to the gift shop and pick out a toy! He picked the one and only Georgie pig and a colorful soccer ball. He has carried George with him everywhere since he picked him out. Originally, he wanted a huge George that was in the gift shop. It was literally bigger than a pillow, thankfully, I was able to persuade him into a smaller and cheaper version. Ha. We love you Peppa and Georgie Pig. OINK!!
Sunday was smooth as well. Sunday night was a little rougher since R couldn't nurse all night. He awoken a few times and watched toons until he fell back asleep. Funny story, on Sunday night we were hooking up his feeds like normal and the tubing from the bag wouldn't stay in the tubing that attaches to R's endovive button. We tried various attachments and tubing and nothing would work. It kept shooting out like there was pressure in it, super weird. So what do you do when two things won't stay together? Tape them together of course and to ensure that they would come apart and soak your whole bed in formula you tuck them away in a diaper. I was cracking up. I kept joking that I was going to put online how ETCH takes care of their gtube patients. We even had the head charge nurse laughing. It was very strange and funny but thankfully our little diaper and tape did their job and R got the full nights feeding!





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!

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