Today the it seems the goal for Kevin was to find a place to put an IV. He's pretty puffy so they have a hard time finding a vein. One of the umbilical cord lines came out and the one in his hand was somehow going bad so they shaved a side of his head and tried to get one in the temple. That didn't work so they shaved the other side and jabbed him a few times there and finally got one to go, now he has a mohawk. They also had a Dr put an IV into his femoral vein. Now he's got plenty of spots to get fed or medicated. He had plenty of morphine in him so he didn't seem too bothered by it.
We are still waiting for more test results but the geneticist feels like he may have Malpuech Syndrome, which is very rare. It is just an educated guess at this point because he has many of the features of that rare syndrome. Over the next several days they will do more specific chromosone tests to see it that's the case.
We also met with a social worker today to learn about some of the resources that are available to help us take care of our son. The entire staff at the NICU have all been very helpful and patient in showing us how to take care of Kevin. Today he was stronger and healthier than yesterday, I hope this trend continues. Right now he's resting from his day of being shaved and poked, we are resting back at the hotel and hope to go back up later tonight for a few hours.
11:00PM- We went back to the hospital, Special K is zonked out, he had a busy day, was worn out, the nurse said they were just doing routine stuff, temp weight etc. He has gained a little weight, he's 9lbs 12 oz. but now that he's peeing again that will probably come down. He's also a little yellow so if that continues, they will turn on the lamp and give him some sunglasses to go with his new hairdo.
I've gotten a lot of support and encouragement from a lot of people, thanks to all, it helps.
5 comments:
Wow dude, I have no idea what to say. I know you two are strong. You got a lot of people thinking about you.
You are in my thoughts.
I'm glad to hear he's getting stronger. He is (as are you and Tina) in our prayers and the prayers of many. Please let me know if there is anything I can do from afar. See you soon!
Kevin, Where are you staying? And do you mind if I share you blog address with others?
Thinking of all of you! Your blog is just amazing. So educational. It is great to get updates on all of you guys. Hang in there, it has to be a hard road, but you have lots of friens and family sending good thoughts and prayers your way. Babies are definetly a gift from above. He is precious.
Gloria
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