We are still at the Hospital (LPCH) this morning, which now for the next several months will be our 2nd "home away from home" (The Ronald McDonald House being the other). Even though I am very grateful for both of our new "homes" which are playing a huge role in helping us reach our goal (getting Mason a new heart), I must say I miss our "Hotel on the Hill" (Primary Children's). Palo Alto is beautiful, the people at both our "homes" here are wonderful, but Primary's was our comfort zone. We know so many people there and miss them all greatly!!! Thank you to so many of our friends there cheering us on right now!
(Mason taking a nap during his IVIG infusion treatment
yesterday. Thanks to the Benadryl they gave to him
to help avoid some of the side effects it can cause.)
One Step Forward.......
The neuro-skeletal doctor who specializes in muscular dystrophy came by to see Mason yesterday. After a very quick evaluation he assured us that Mason does not have muscular dystrophy and saw no reason to run any lab work etc. He then spoke with Mason's transplant team and crossed that off our check list to get Mason on the transplant list. Hooray! But we still have a few more items to check off.
Two Steps Back........
Since we all know Mason doesn't like to do anything the the easy way, we've had a couple of set backs!
First: (This doesn't really keep Mason off the list just in the hospital longer which he really doesn't like!!) Late monday night soon after they started the IVIG infusion he fell asleep (due to the benadryl they gave pre-IVIG). Then he began to have low blood pressure. This worried the nurse so she stopped the infusion and called the cardiologist 'resident' on call for the night. The decision was made to stop the infusion until morning when the whole cardiologist staff would be in the hospital in case there was a problem during his treatment. So that bumped us back 12 more hours. The plan was to do the 1st 12 hour infusion starting at 9 pm Monday, then a 12 hour break, starting the 2nd 12 hour infusion at 9 pm Tuesday. Then Wednesday late-morning after post-IVIG blood draws we would have been discharged. Now we will be here 'till Thursday sometime.
The biggest bummer is that the resident didn't make the best decision, cautious but not necessary! When the senior cardiologist 'fellow' came by early Tuesday morning he said that he would have kept the infusion going because he was tolerating the low blood pressure just fine. His heart rate and O2 saturations were good. The low blood pressure is probably his normal 'sleeping blood pressure' and had nothing to do with the IVIG treatment.
The second and biggest problem: Mason began coughing Monday during our walk over to the Hospital. Because his cough persisted after he was admitted the Dr's decided to isolate him from other kiddos and test him for viruses. I teased the nurses saying Mason was coughing just because he wanted a private room! I guess I shouldn't have teased because then in the morning I got 'pay back' with the test results. Mason has RSV! What? Are you kidding me? He doesn't even seem sick, except for a cough! Since Mason has been receiving Synagist shots again this year (RSV vaccine for kids with serious health concern) his symptoms are very mild. I learned yesterday that the Synagist doesn't prevent a child from getting RSV, but if they do get it the severity of the symptoms and the duration will be a lot less. I love Synagist!!
But even with less severe symptoms and no fever this causes us some problems...........
(1) Can he be listed? and
(2)How long is he contagious?
(1) As I was working on this post Dr. Rosenthal came by on rounds and explained that if his cough continues to get better (which it is already better since Monday) then he can still be listed in the next 2 days. But it is not recommended to put someone on by-pass (meaning perform a heart surgery) within 4-6 weeks of having RSV! He does still think it would be good to get Mason on the list, to get his clock ticking per say, but they would be VERY selective if he got a call with a donor match in the next 6 weeks. It would have to be a superior, absolutely perfect match for them to consider it for Mason during this time! Thats a bit of good and bad news altogether.
(2) If Mason is still contagious when he's discharged tomorrow we aren't aloud to stay at the Ronald McDonald House! Even though, that's probably where he got it (okay, it could have been the airplane too)! We do have some family in the area as well as friends through the church where we could go stay temporarily, but what a hassle! And why would they want RSV at their house either? And the R Mc House is in walking distance to everything we need.
I want to complain about these hold-ups and obstacles, but then I look back to September when we were given no hope for Mason and just months left with him here on earth. Then I feel bad for feeling discouraged and am just GRATEFUL for this new option we have been given to get our Miracle Mason a new heart!!! I'm trying really hard to continue looking at the big picture and have faith in Him, who's hands really are in charge of Mason's future. I know He will answer our prayers when the time is right.