I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James
Thursday, April 28, 2011
Today has been okay until I got a phone call this afternoon. Let me tell you how today went. First off, we got up this morning, Kayden was in a good mood he ate a little not a lot which is normal for him. Well I gave him his meds. About an hour later he throws up. So I was freakin out trying to be sure it wasn't his meds. Which it didn't look like it. So by noon I put Tavion down for his nap. Yesterday Kayden went to his GI doctor & cardiologist. To make that short. The GI doc wants to go up on his feeds & the cardiologist said he looked & sounded great & he needed a routine chest xray & blood work just to be sure nothing is going on...SO I took him for his xray & labs around 1 pm today. So, around 4:30 I get a call from his cardiologist, I was expected good news that everything looked fine blah blah. WELL, he said the chest xray didn't look great & it looked like the pleural effusion was coming back, not bad enough that he needs to be in the hospital thank God. But he told me to go up on his lasix to 3 times a day instead of twice. The lab results hadn't came back yet. So I'm praying that they come back good. I'm totally freaking out. I was NOT expecting this. I just don't know anymore...I know I can get through this, I KNOW I can. But the fact of the matter is I'm scared as shit & I feel like putting Kayden in a big bubble the rest of his life..Although I know I can't! I don't understand how I am suppose to stay positive though & think good things when this is the second time this effusion is coming up, & after surgery..I mean really? I thought he'd be good after surgery & wouldn't be in & out of the hospital. Here it is 6 weeks today since his surgery & he went in the hosiptal a few days after being home & we've been home from that time 2 weeks & the effusion is coming back! I mean really? This thing is probably going to continue coming back & I don't know what they can do about it unless they reverse the glenn & then I'm afraid his repair will be bad. And one thing leads to another...& he'll need a transplant because if this repair didn't work..Then the only other option was transplant. So I'm scared to death. I don't know how to stay positive anymore. I know I shouldn't have expected good news but since he sounded excellent yesterday of course I was expecting great news...Well tonight he was eating & threw up again. So I'm freaking out. I'm checking his oxygen & temp every so often to watch both of those. Last time his oxygen dropped into the low 80s & temp was 102-103...So I'm watching him closely. I know his cardiologist is going to keep an eye on this & he knows if I see one thing out of wack I'll call them & take him to the ER. I may be a little paranoid but I know Kayden. Kayden works this way...whatever is least likely to happen, will happen to him. So I guess only time will tell what will happen. Please keep Kayden in your prayers that his meds kick the fluid out of him.
Posted by Misty at 8:28 PM