After being offline for a few months the website is back! I will be adding all of the old blog entries from March 2009 onward so I have a good timeline of events for the past year. Thank the Internet Gods for Facebook’s posting to Notes feature 
We finally managed to get Matt out of that stinky hospital bed today. Andrew and I took him over to the teen room where we played Playstation 3 for a while and listened to the juke box. We took him for a spin around the 4th floor too so he could see the different courtyards.
He still has a leak and we’re hearing now that they might go in and take care of that on Monday, but then they might not also. I’ve told Matt of my plan to start a foundation for his medical bills and explained to him that this means he’ll have to be the face of this disease, something I know he isnt too fond of. He said he’s ok with that, as long as I can get the Blaggards to play for him LOL!
We’re doing dueling hospitals right now too. Joy and baby are at Seton, Matt’s at Dell Childrens. I’m tired!
We’re still waiting for the leak to heal in Matt’s lung. All of the doctors are in agreement that the best thing is for this to heal on its own, and waiting is ok because he is stable and doing very well.
He’s bored as piss after spending the last 5 days staring at the same 4 walls, laptop and TV; and we’ve got to find a way to get him out of that room tomorrow and outside for some sun. Its been a little difficult to persuade him with the tube coming out of his chest attached to a vacuum pump stuck on the wall, but he’s got to get out of that room tomorrow.
Joy had her baby today!!!! Reign came into the world at 711pm and weighted 6lbs 15oz and was 19in long. She’s so pretty and looks just like Brandon!
Nothing big to report today. The doctor says he’s still leaking air, and we’re still in a holding pattern. I’m starting to wonder if this hasn’t been happening for a while and it just got to the point that it bothered him on Monday.
The cat ran away on Friday, came back Saturday morning and then left again and hasn’t been seen since. I think he sensed that something wasn’t right with Matthew and bolted. Kitties are smart like that ya know
Matt’s doing the same today. Still has a leak, and we’re in a holding pattern. I got a letter last weekend that I needed to go into the Social Security office today for a review. Of course, I make too much money for him to quailfy for SSI, and this automatically kicks him out of the Medicaid program. How is this even right? How can a child who needs not only new lungs but also surgery on his eyes so he can SEE just be dropped from medical coverage like that? If employers have to offer COBRA coverage when they let people go, why doesn’t the government? Not that I could afford to pay that either, but really, something needs to change in this F*CKED up system!
I found this letter in Matt’s coat pocket when he was having the chest tube put into his lung Monday night. I was thinking about sending it to our new President.
Matt seems to be doing a little better today. The color has definitely come back to his face! I didn’t even realize he was so pale.
He still has the chest tube, and we were told that the xray today shows improvement, but there are still some air pockets that have not resolved, and he is still leaking air into the cavity around his lung. The doctors have said that this was totally spontaneous. He has developed ‘blebs’ in his right lung, and one of these ruptured, causing air to leak out of his lung. This means we could be going through this again. I hope this doesn’t mean he’s getting worse.
Matt woke up this morning complaining that his ribs hurt. Just so happened that I had an order from his first visit to the pulminologist here in Austin for a chest xray, so when he told me that he thought he needed one, I took him immediately. I called the doctor when we got home to let them know what was going on, and asked to have the doctor please check out the film as soon as they could access them. He called back a little while later and told me that Matt has a pneumo-thorax. It’s a collapsed lung. So off to the hospital we went.
The doctors decided he needed a chest tube to remove the air from his lung cavity. Now we play the waiting game to see if that will work or if he’ll need another procedure.
Matt is my awesome 12 year old that was diagnosed with BRONCHIOLITIS OBLITERANS about 2 years ago. While his diagnosis of this is rare, he developed fibrosing affecting the lungs after he had a Stevens-Johnson Syndrome reaction on August 21, 1999 that also effected his eyes, and probably lymphatic system.
Matt will be going for a consultation with an eye surgeon at Baylor Eye Clinic
I’ll be posting information here so friends and family can keep up with Matt’s progress as we take his health back!