Thursday, April 2, 2009

Still under the weather and cardiology update

Parker is still not feeling great. He has had a fever on and off for three days now. I made an appointment for last night at the after hours clinic, but when he woke up from his 5th nap of the day he didnt have a fever anymore so I cancelled it. Well, he woke up in the middle of the night with a fever so I have made an appointment for this afternoon and whether he has a fever or not I am taking him in. I'm kinda thinking ear infection, but who knows!! I woke him up at 8:30 this morning to go to work and he went back to bed at 9:10. When he doesnt feel good he does cuddle with me...which I love!

Now on to the Cardiology appointment. It went ok. He didnt scream as much as last time, but dont worry, we still got some! His pulse ox is way down from last time, it was 76. That isn't that bad, but Dr Seib doesnt want it consistently that low. Since we dont have a pulse ox machine at home anymore he wants us to go to the pediatrician's office about once a week and check his pulse ox. If is stays down then he will probably want to do a heart cath. At this point our next appt would usually be in 6 months, but he wants to see Parker in 3 months. He said Parker is doing great, but he just wants to keep an eye on him. make sure nothing is kinked or any collaterals are forming.
We did talk about the next surgery (the Fontan)....that is so hard! He said between 2 and 4 years of age. He cant really predict when it will be, but he is kinda thinking in a year or so. Parker's body will let us know when it is time. He said that Parker needs to be at least 26 lbs for surgery! In the surgery they put a tube in and they want to put a big enough tube so that it is still big enough when he is older and bigger. Parker weighs 19.5 lbs right now--do you know how hard we have worked to get that big?? We just need to work harder. I am going to call the nutritionist and ask her for some suggestions. I dont want Parker's body to NEED the surgery and then him not be big enough. Of course, Dr. Seib was very honest with us and used words like transplant. He said that he doesnt see that being an option but he just wants us to know the possibilities. Parker could start needing the Fontan and then the surgeons dont think it will do any good for his heart and that is when transplant talk will really come into the picture. Dr Seib does not think that will happen but I am so glad he is honest with us.
Here is how we entertained Parker during the appointment...
I started blowing bubbles while he was getting his blood pressure taken and Parker said "bubb-bbls". I couldnt believe it!! I guess he learned it at therapy (they play with bubbles alot). He is growing up!
Thanks for all of your prayers. I will let yall know how his appointment goes this afternoon.
Oh, and everyone was SOOOO excited to see Parker walking!


The Simmons Family said...

GREAT NEWS!! He'll gain weight... Parker always pulls out all the stops!

Praying that he'll be okay for Fontan come time. Transplants suck. Can you sense my optimism right now?!

If it weren't for these darn antibodies...geez. Hey... you go through Univeristy of Alabama right? I think I remember you saying you liked them? I might call them too. I'm trying to find a transplant center that is centrally located to get a heart from the east or west coast. NOT easy.

Thanks :)