The majority of today was another uneventful one for
Tim. He spent time doing his two
favorite things, eating and playing including some time playing video games
with his dad, a fun game of body part bingo that won him a cool new Lego kit
and having fun with his visiting sister and brother tonight. As has been the case the entire time he's
been in the hospital there was nothing remarkable about Tim's day and on the
whole it was a good and fun one for him.
For mom & dad it was a little bit of a different story
when we met with several of Tim's doctors this evening. After the cardiac team meeting this afternoon
the resulting recommendation/decision is that Tim definitely needs a
transplant. With that said some of the
early lab work is going to get started straight away to be able to determine
what is needed to get a match for Tim.
The next big decision is if Tim will need to remain in the hospital
until a donor heart is found or if he will be able to come home. We, of course, would love to have Tim at home
since it simplifies everyone's life a great deal, but that could be at
significant risk for Tim. To help make
that decision (hopefully) a little more clear Tim is going to have a
catheterization later this week once some scheduling issues get resolved. This is to test the pressures in Tim's heart
and lungs to see what kind of shape they are in. After we get the results of these tests we
will be able to make a decision with the transplant team about where Tim will
wait for his heart.
All of this, of course, is a little hard for us to fully
digest at the moment. We knew this day
would be coming at some point but were comfortable with the fact that it was a
day far out in the future. The most
pressing concerns are about how best to manage Tim's care and who can be with
him most of or all of the time. With a
few more days to think things over and come up with a plan we're sure we can come
up with a workable solution for everyone, but looking ahead at what could be up
to a half a year in the hospital it's going to be a challenge the whole family
will need to find a way to overcome.
1 comment:
Just read some of Tim's story and wanted to tell you to have hope. My granddaughter is 19 and just got her new heart on Feb.1, 12. She was 9 when she was diagnosed with Uhl's anomaly, a very rare heart disease. Once it was decided to place her on the list she was in and out. Once this year she was in for 38 days but got an infection and they sent her home. She then came back for 12 while on a swan cath, went home for Christmas and was back in from Jan 2 until her transplant on Feb.1. So far so good thank God. Not sure where you are or what hosp. but we were told that the longer time spent in the hosp. the better your chances. God bless. We will add Tim to our prayer list. You can check out Kayla's story on FB at the search bar put in Letters to Kayla.
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