Joel Update

Hello all. It's been a busy week for us here in the PICU.....Joel's doing amazing! He weighed 4.11 kg this morning (a little over 9lbs,) and is slowly continuing to gain weight, which means that he is ventilating at a comfortable rate. He weaned off his oxygen support too!!! He still needs to be on the ventilator for pressure support reasons, but as he gets stronger and gets to a more normal weight that will eventually be weaned also.
Joel's hydrocephalus seems to be under control with his new shunt. One ultrasound this week showed the ventricals getting a little bigger, but the next day they looked unchanged. Neuro wasn't alarmed, but we're keeping a close eye on it, and he's getting head measurements daily.
His amiodarone (heart) was switched to a different med. I don't know how to spell it, but it's a milder medication. The old medication has a long "half-life," so if any issues are going to pop up from it, it will be over the weekend most likely, so I am very thankful that we are having to continue to stay here until early next week. Close monitoring is always a safe bet with Joel.
His issue with breastmilk has resolved. :) I'm so glad too, because all of the milk & colostrom we saved, he's finally able to take. He was behind enough on his feedings that earlier this week he was still getting colostrom from his first week of birth!
Physical Therapy and Speech have seen a lot of improvements as well. Most babies after being intubated for over a month will have oral aversion, and if any, his is minimal. He loves his binky, and this week he's started putting his hands in his mouth, and bringing his hands up to his face...(this is really good for the muscles in the face and throat because it forces the tongue to move to the front of the mouth.) His legs and arms are getting stronger and are moving more, so they aren't as tense and "froggy-legged" as they used to be. He will continue seeing PT and speech once we get home.
Insurance, Medical Supply, & Nursing are finally wrapping up. Medicade is being a pain in the butt,....but could we expect any different? At least I was told to expect this, it makes me all the more determined to fight.
At the moment, Adam and I are "rooming-in" with Joel. We are spending the next 24 hours in his room without the help of an RT. It's one of the final check off's in order to be discharged. So far, no catastrophies! (Thank you Joel!!! He likes to misbehave from time to time during the middle of the night...) Although, we've moved rooms now FOUR times in the last 3 months, and two times in the last week. There are benefits. We have our own bathroom. Our son is the healthiest kid in the PICU....FINALLY. Drawbacks?? We have a new nurse, and we're far away from all of my favorites. Not to sound like a total crab here, but I like my nurses. I don't want anyone new, and after being here this long, it gets frustrating to explain my kid to someone who doesn't know him. Oh well. We will be out soon enough, and until then, I don't have to walk down the hall to pee. :)