Lastest Update on Mason - As Reported from Colleen
First of all, since I'm tired of saying Mason's mom, I will call her by her first name. Janet called me a bit ago to say that there was no major change with Mason since yesterday. His o2 sats had dropped a bit at one point, so they had to increase the o2. Mason is still opening his eyes a bit, he also sticks out his tongue, and he's moving his arms. Janet has had to lay on Mason's arms because she just knows he'll rip out the ventilator tube if he gets a hold of it. I think that is the biggest reason why he is still sedated!!
Mason's doctors have said that Mason had internal bleeding in his lungs, which is now stopped. The only conclusion they have come up with as to why this happened is that Mason had a very bad reaction to the photo treatment on Monday and Tuesday. They do not know which part of the treatment caused this reaction, but they are working to figure that out. However, Mason will not ever have the photo again.
Mason's doctor is optimistic that Mason will pull through this, but it's going to take a very long time because Mason's lungs were damaged. Also, Janet said that Mason's doctor is willing to go to bat for Mason in regards to asking for a second transplant. Apparently Kaiser and UCLA work together now on transplants. This is not a guarantee that they will do one, and Mason isn't even close to being ready for one yet. However, it's an option!! Janet will call me again tomorrow with an update, unless something else happens today.
Original Post - Mason has been MIA for a couple days, so I called his mom again tonight to see how he is. He's not good. He is in Kaiser LA ICU again, intubated and sedated. His mom said the docs do not understand what happened. They said he wasn't in rejection. They also said they didn't think he was going to make it overnight (this was Thurs night). Today (Friday), Mason has shown some signs of improvement, but still has an incredibly long road to go. His entire family is in LA right now, and they are all really shook up. Please pray for Mason!! Or have good thoughts for him if you aren't the praying type!! He really needs them right now!! I will keep you updated when I get news!!
Saturday's Update - Mason's mom left a message while I was out. She said Mason needed 2L of blood very early this morning. They don't know why or where he was bleeding. His vitals are not great, but better than when he went into the hospital. They tried to increase the ventilator, but his lungs didn't tolerate it at all, so they had to put it back on a lower setting. So basically he is about the same as yesterday.As for why this all happened....no one knows yet. They do not know if this was a reaction from the photothesis procedure he had on Mon and Tues (to combat the chronic rejection), or if something already was going on before he had it done. They keep doing tests on him to figure this all out. They aren't sure why he was bleeding either, and they were supposed to see if had stopped around 9pm EST. I did call his mom back when I got home, and left a message telling her how much we all are praying for Mason, and we love him and are hoping he pulls through this! She is going to call me back either tonight or tomorrow morning.
Mason's story and picture were included in the "Phriends' Stories" booklets that were passed out at the 3rd Annual Phenomenal Hope for a Cure fundraiser.
Here is his story:
My journey began late in 2005. I was 17, working and going to school full time. I started to notice shortness of breath in the mornings. I thought I was just getting out of shape and didn’t worry too much about it. After a few weeks one morning I was pushing out quads, (I worked at a off-road shop) and became very short of breath and passed out. I was rushed to the ER. They told me I had pneumonia and sent me home on antibiotics. I took about a week off work and rested but I didn’t really feel any better. I went to a few different doctors, but they didn’t know what to do or what I had. One thought it was asthma and the others weren’t sure. One doctor scheduled an echo and x-ray. But I couldn’t wait any longer. So I went to a hospital in CA. It took about a week of tests and evaluations to get a diagnosis of PPH. I was sent to a PH specialist in Los Angeles for a right heart cath. The doctors discovered that my PH was severe and that I needed start on Flolan immediately. I was told that it usually works well and quickly. I didn’t mind mixing or any of the stuff that goes with Flolan. The problem was I had PVOD (pulmonary veno occulsive disease). PVOD is hard to treat. It clogs the veins leading from your lungs to your heart, and causes your pulmonary arterial pressure to rise just like any form of PH. The Flolan lowered my PAP but made my PVOD worse. By February I was bed-bound. If I had to walk more than 100 feet I had to use a wheelchair. I was listed for transplant a few months later and waited 11 months for my transplant. After the transplant I had a great recovery and was a full time walker in the first month. I had 5 months of greatness, no problems at all. Then I got hit with rejection, fungal infection, flu and pneumonia. That has slowed me down a bit and there are still some bumps. But I’m still glad I got it. If I get a few more quality years, I’ll be happy.
Sunday's Update - Mason is still about the same, no more blood tranfusions, which is a good thing. Still very sedated, can't really get him off the ventilator yet, his lungs don't like it. They have him on puffs of air right now, b/c his lungs won't take anything more. They started him on a heavy dose of steroids today since they are not sure if his lungs have an inflammation, or if this is still chronic rejection. His doctor will be in tomorrow morning, and Mason's mom has a lot of questions, so she'll try to call me earlier if she can.
Mason's mom wants to thank you all for the prayers and thoughts from everyone here. I tell her every time I talk to her that we are all rooting for her son!
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