I found out today that his TEE, ultra sound and hearing test probably won't be done until next Monday. Being holidays last week and this week, trying to coordinate three different clinics and getting an OR room is taking time. But I took him in to get weighed today because he has been puffy. And he was 19 lbs. Which normally we would be rejoicing. He has never been up to 19 lbs, but because he's retaining fluid it just means that there is more fluid in there. And the last couple of days he has had these screaming fits, which he never does. My ped. called the hemo doc on call and they want to see him tommorow. I guess they think that he has more clots in his subclavian and its giving him headaches. It really sucks when they can't tell you whats wrong. They are going to do another ultra sound of his neck and look for clots. Hopefully they don't admit him and want more. But I do have a feeling they are going to want to hurry up with the TEE, so it will probably be before next Monday.
Oh and we are going to try a bolus feed in about 20 minutes. He has been on continuous feeds since October so this is a trial to see if his tummy can take it. I will let you now if it is a sucess or if it all comes blowing up past his nisson.
Fingers crossed !!!
I'm hoping that they figure everything out really soon. I will be praying that it isn't blood clots. I can feel your pain. To watch our little ones in so much pain and nothing makes them feel better.
ReplyDeleteI will be staying close to see what the doctors find out.
Take care.
Your post is like deja vu for me! Hopefully they can get some answers soon. These clots are horrible and cause so many problems. We will be praying for all of you and hope that the doctors can resolve his problems soon!
ReplyDeleteYou poor thing! I can't even imagine what you are going through. Will keep my fingers crossed that Jax's problems will be resolved soon...poor guy!!!
ReplyDeleteHUGS;)