- They did a Fluid and Function Echo (which is incredibly short, like 15 minutes), and everything looks good.
- Her SATs were in the 89-92% range on room air. Pretty considerable difference since we left and they were 86-89%.
- Her "blood plessure" (as Abbi likes to call it) was of course off the charts - mainly because she was mad as anything.
- They said her incision looks good. They took out the stitch from the main drain tube. Abbi also freaked out at this, but it was so fast I don't even think she knew when they started or when they finished.
- They checked her height and weight. She lost 1.5 pounds in her week long hospital stay, and thankfully she is back up to the same weight on the day that she was admitted.
I suppose I was naive, but I kind of thought "Abbi's week long hospital boot camp" would prepare her for any future hospital stuff. I mean by the end she was getting pretty good at it. But no such luck. It was back at square one. Screaming at the doctors as usual! She was surprisingly good for the echo, but that may have to do with the movie screen hung above the bed. Dora of course!
We were able to talk to Dr. Tham. I really like her. She asked how Abbi was doing and told us some things to look for in case her body is struggling to drain the excess fluid. Swelling, puffiness, poor color, rapid breathing, etc. Of course, all those fun things that any parent loves to hear! She said she likely wouldn't come off the Lasix (diurectic) or Enalapril (blood pressure) until her June 11th appt, or possibly longer if her body still needs it.
She said now we wait and see what her body will do with the fenestration. She said that they can close on their own, but for some kids that can take years. Or just months in other cases. Or for others their body just won't close it, and that's when they need to go in, via cardiac catherization and close it (going through an artery in her groin).
She said we will know its closing because her SATs will go up and her skin will get even pinker. Its already hard to imagine her color being any better. We didn't think it was terrible before, but when she got cold her lips were quite purple, as well as her nail beds were quite dark. Almost like she was wearing light purple nailpolish. When we first saw her come out of the surgery into the PICU, I could already see a major difference in her coloring. Amazing!
So all in all, it was good. I think we were there for almost 3 hours. The actual amount of time that we were in the presence of a doctor was probably 45 minutes or so. Its unbelievable how backed up they seem to get in there. Basically the waiting room runs out of seating!
I said to Ruth, the one sad thing about coming back, is that you see all the people you left behind. The boy who was in the I.C.E. room with us (that needed to be suctioned out almost constantly), was still there. I imagine he may be waiting on a lung transplant and may never leave that room until that happens.
We also saw a family that went into PICU on the same day as we did. Eventually they needed to suit up everytime they went in, so the child must have had some sort of infection or was immunocompromised (there are private rooms along the perimeter of the PICU for kids who stay long term, older kids, or those who may be ill or can't be exposed to any germs). Thankfully we saw them walking into the ward, so the child (I think it was a girl) was moved up to the ward.
Still blows my mind, 7 days. Call it lucky, blessed, whatever you may. We are definitely grateful, and even moreso now that they have checked her over once again and said everything looks good.
- Her SATs were in the 89-92% range on room air. Pretty considerable difference since we left and they were 86-89%.
- Her "blood plessure" (as Abbi likes to call it) was of course off the charts - mainly because she was mad as anything.
- They said her incision looks good. They took out the stitch from the main drain tube. Abbi also freaked out at this, but it was so fast I don't even think she knew when they started or when they finished.
- They checked her height and weight. She lost 1.5 pounds in her week long hospital stay, and thankfully she is back up to the same weight on the day that she was admitted.
I suppose I was naive, but I kind of thought "Abbi's week long hospital boot camp" would prepare her for any future hospital stuff. I mean by the end she was getting pretty good at it. But no such luck. It was back at square one. Screaming at the doctors as usual! She was surprisingly good for the echo, but that may have to do with the movie screen hung above the bed. Dora of course!
We were able to talk to Dr. Tham. I really like her. She asked how Abbi was doing and told us some things to look for in case her body is struggling to drain the excess fluid. Swelling, puffiness, poor color, rapid breathing, etc. Of course, all those fun things that any parent loves to hear! She said she likely wouldn't come off the Lasix (diurectic) or Enalapril (blood pressure) until her June 11th appt, or possibly longer if her body still needs it.
She said now we wait and see what her body will do with the fenestration. She said that they can close on their own, but for some kids that can take years. Or just months in other cases. Or for others their body just won't close it, and that's when they need to go in, via cardiac catherization and close it (going through an artery in her groin).
She said we will know its closing because her SATs will go up and her skin will get even pinker. Its already hard to imagine her color being any better. We didn't think it was terrible before, but when she got cold her lips were quite purple, as well as her nail beds were quite dark. Almost like she was wearing light purple nailpolish. When we first saw her come out of the surgery into the PICU, I could already see a major difference in her coloring. Amazing!
So all in all, it was good. I think we were there for almost 3 hours. The actual amount of time that we were in the presence of a doctor was probably 45 minutes or so. Its unbelievable how backed up they seem to get in there. Basically the waiting room runs out of seating!
I said to Ruth, the one sad thing about coming back, is that you see all the people you left behind. The boy who was in the I.C.E. room with us (that needed to be suctioned out almost constantly), was still there. I imagine he may be waiting on a lung transplant and may never leave that room until that happens.
We also saw a family that went into PICU on the same day as we did. Eventually they needed to suit up everytime they went in, so the child must have had some sort of infection or was immunocompromised (there are private rooms along the perimeter of the PICU for kids who stay long term, older kids, or those who may be ill or can't be exposed to any germs). Thankfully we saw them walking into the ward, so the child (I think it was a girl) was moved up to the ward.
Still blows my mind, 7 days. Call it lucky, blessed, whatever you may. We are definitely grateful, and even moreso now that they have checked her over once again and said everything looks good.
Here are just a couple pictures since Abbi's been home. We are all so glad to have her home.
Especially Rob. You can tell by the fact he wanted to eat dinner with her at her mini-table. So sweet!
Our sweet girl with some crazy post-hospital hair!
And the little Bubba himself. Glad to have a life a little more back to normal.
Especially Rob. You can tell by the fact he wanted to eat dinner with her at her mini-table. So sweet!
Our sweet girl with some crazy post-hospital hair!
And the little Bubba himself. Glad to have a life a little more back to normal.
So glad things are pregressing so well, have been praying for you guys...it's just been a mad house around here. Blog land is the first to go when that happens.
ReplyDeleteOr maybe I should just call our house a ZOO instead.