Sunday, February 1, 2009

Sporting A New Look

Milo's Broviac (his central line or semi-permanent IV in his chest) came on on Tuesday night. It just fell out. Very strange. He was playing on the floor with a car and I looked down to find his broviac laying on the floor, Milo saw it at the same time and picked it up. I jumped up and grabbed Milo throwing his shirt up to see what was going on, I think Milo was pretty confused. No blood, that was good, I guessed but did that mean that part of it was still in there? So off the ER we went to get a chest X-ray to make sure it was all out. Luckily this was the fastest ER trip ever only 1 hour, sure beats the 8 hours were there on Dec 31 to have the broviac repaired because it had a hole in it. It was all out and since we really don't use it it wasn't such a big deal. We had planned on having it taken out in a few months anyway. Now is chest is free of tubes and he can run around with out a shirt on. 1 tube down only 2 to go, trach & g-tube. As for the trach things are coming along quite well. At his last pulmonology appointment a few weeks ago the doctor said she plans on taking his trach out the end of March or beginning of April. YIKES! Don't get me wrong I'd love to be free of the thing but it's scary at the same time. Right now he has a airway that's safe take that away and we have to hope for the best. We are allowed to cap him (that pink thing in other pictures) to force him to breathe through his nose & mouth. Right now our order are for up to 6 hours a day but he just isn't tolerating that. He won't leave the thing on and if he does he gets pretty crabby & clingy. His oxygen levels seem to be fine so I'm not sure what his problem is. It could be a sensory thing, when he got his trach it took several weeks and coding 4 times to be able to breathe without sedation. At least he isn't being that dramatic this time around! And the G-Tube, well that will be with him for the foreseeable future. He has no interest in eating orally. He gags if anything gets to the back of his tongue, he has to learn to swallow instead of gag, it's not pretty. We are working on it but I think it will be a long process. His belly seems better for the most part. He has his gagging spells about once a month that get so bad he sleeps after eating because he is exhausted from retching. Pedialite for a day seems to fix the problem. The doctor feels it is because his stomach muscles are slow and don't empty his stomach very fast especially if he is under any kind of stress. He prescribed a medication that would hopefully help the problem but when I went to fill it the pharmacist said it is no longer being made. Back to square one.

I think that's about it for the medical update. Milo is a crazy 2 year old who has come into the terrible 2's with a vengeance, tantrums and all. Most of the time he is a joy to be around though. We've had some fun outings and I hope to post pictures and stories soon so check back if you haven't seen them yet!