.......at the Hotel on the Hill!
I'll back up..........
At Mason's transplant clinic visit on Thursday, nothing was determined really about why he still needs O2 (1/2 liter) at night, except that sometimes after pneumonia some kiddos need night-time O2's for 4 weeks and it had only been 3. His echo showed no changes to suggest rejection. His labs all looked normal (nothing showing infection) and his chest x-ray looked almost back to his base line. So, we discussed the need to see a sleep doctor and possibly an ENT. It is common for transplant kiddos to get enlarged tonsils from their medications, and some need to get them removed because of the tonsils causing sleep issues. I was told to make appointments with the doctors we discussed and just to watch Mason's sats and behavior. If anything worsened to call.
Well............ on Saturday things worsened so I called the transplant team. Usually once morning comes we can ditch the O2, but yesterday he still needed 1/2 a liter or he would drop into the 80's. (I have a Pulse Ox to check his sats.) Then when he laid down for a nap, (which he asked to lay down - NOT NORMAL!!!) he began to de-sat into the the 70's! Yikes! AND he needed 2 liters for the next 4 hours while he slept to stay in the 90's (4 hour naps would be a dream but NOT NORMAL either!) Upon waking I was slowly able to take his O2 back down to 1/2 liter, but not off. Worried? Concerned? Yes, just slightly! When I called the transplant team they were also quite concerned about his sudden increased need of O2. They sent us up to Primary's ER to have him checked out.
And here we are................
........checking into the ER.
Mason would have rather been at big brother's baseball
game (where we were supposed to be), but actually was
surprisingly pleasant and polite to all the nurses and docs.
I figured it was because I remembered to bring his
favorite baseball mitt and blanket :)
What is going on??? We still do not know! The doctors are baffled. His chest x-ray even looks better since Thursday.. His lab numbers all look normal. His CRP and white blood cell counts are both normal, which if elevated can be measures of infection in the body. So far his bacterial blood cultures and PRV (viral panel) have come back negative (but can always show something up to 72 hours). If this is not an infection, then could this be his heart? Could this be rejection?
They kept us overnight to watch his O2 sats. Also if we had gone home and he had needed more than 2 liters in his sleep then I'd be in trouble! Pediatric concentrators only go up to 2 liters, because a need greater than that means the child should be in the hospital!!! Fortunately he only needed 1 liter through the night last night, but has still needed 1/2 a liter today. Something is wrong! He hasn't needed O2's since his transplant. Well, actually since he overcame that first severe rejection.
Today they have done an echo but I have not spoken with a cardiologist since then to get the report. But, I will say that to me his tricuspid valve appeared to be severely leaking. I am not a pro, but have I have learned a few things about echo's in the last few years!! Mason's T valve began to leak mildly with that first severe rejection, and slowly with him having had so many biopsies, his T valve leakage began to be more within the moderate measures. But, it has been stable there for probably about the last 7 months. If it is severely leaking what does this mean???
The transplant team also said they want to move his biopsy up to tomorrow or Tuesday. (And this was before the echo even.) They are working with the cath lab to rearrange schedules and fit Mason in. This is to hopefully rule out rejection or get it treated for immediately.
I will update with any news as soon as I can.
HAPPY FATHER'S DAY TO MARK.
What a bummer of a day to be in the hospital!!!
We are sad we are not home spending this day as a family.
(This was at Braiden's Baptism on March 6, 2011.)
Please pray the doctors can find out what is going on with our Miracle Mason ASAP and get him treated!! Thank you!!