Thursday, September 25, 2014

Day 60- Hungry but having fun

It seems that right after I wrote that No News is Good News we started to get some not so good news.
Each week they draw blood to do labs they check many things but once again his inflamation was up (CRP test). That indicates something isn't quite right so they look for infection. This is when they do the blood, urine, spinal tap, and picc line tests to see if the infection is in any of these areas. At this time they also started him on really strong antibiotics so they were one step ahead of whatever was going on.
I refused the spinal tap because of the risks I learned about last time and because in my heart I felt it wasn't the issue and he seemed to be doing good (no fever etc). Well none of the tests showed anything significant so they tested his wound (day52) the next day they called me at 7 am to tell me the culture grew staph. So it was a good thing we had already started him on antibiotics. About an hour after I got to the hospital he threw up but it wasn't a normal throw up and they wanted to do some xrays of his belly to see if it was something to be worried about. They decided to stop feeds for the day. However by the end of the day between the xray, a distended belly, the throwup and bile not passing through his system they decided to treat it as NEC Necrotising entracoloitis. A disease of the intestines that can be pretty bad. To treat this they use antibiotics and stop feeds. They decided a 10 day course of treatment would be good. That means 10 days no food and then we start back at the begining of reintroducing feeds to him at a small amount (blast we had been up to 39mL). They also put an Anderson Tube back in his stomach to drain the bile since there is a blockage in his system and it isn't making it through.

With the Anderson (day 57)

Since they supspended feeds he is back to getting all nutrients (TPN) through his picc line. But that day the picc line clogged and they couldn't unclog it so they had to replace the picc line (put a tube in his vien and thread it all the way up his arm to his heart).
They also had been finding for the last couple days his red blood cell count was down and the iron they had started wasn't helping so he got a blood transfusion that day as well.  That was quite the day for us. But through it all he has seemed really good. (This all happened on the 17th, Day 53).

 Today(9/25 day 60)has been great, they removed the Anderson tube since his stomach is now passing the bile through his system.  The fun part was that the developmental therapist came and we put a mat on the floor and got him out of the crib to play for the first time. It was really fun we got the toys out and had a great time. It was really refreshing to see him hanging out like a normal baby. I love these fun good days. He is doing great. On Saturday they will do another x-ray of his belly. If everything looks good we will stop the antibiotics and Start him on food AGAIN!!! We will have to start slow but that's ok. He is the biggest baby in our room. We look forward to more progress. We are  hoping to have him home by Halloween.
Debbie the Developmental Therapist (day 59)
Playing with Toys


Sylvia said...

Always looking forward to these updates. You guys are troupers. Love to all of you!

Jeana said...

What a trooper!! You guys are in our thoughts and prayers....I hope everything is going better.