Saturday, April 17, 2010
Update
Well Dr.Swanson (our Cardiologists partner) was in this a.m. and I voiced all my concerns to her and then she hit us with some not so great news... Maccoy went for his chest xray this a.m. and appears to have fluid built up in his Right side the kind of fluid that the chest drains can't drain so she has up'd his Lasix to every 8hrs plus started him on another diuretic (have to check the name starts with a D) all to try and get that fluid gone if in a few days it is still there or getting worse he will need a chest tube to drain it :( We knew there was going to be bumps in the road and this is one of those, but on a good note she said he is doing very very well for this soon after surgery even with the bloating and vomiting which they see in A LOT of kiddos after surgery and she understood why I was concerned and frustrated she also said we are to stay on top on the pain med and that tylenol/ibuprofen aren't enough so she was going to tell the nurse pain meds every 4 hrs all day today keep him comfy! He did have a poopie diaper! And his belly isn't as bloated and hard! He is not smiling but he loves loves loves to hold mommy and/or daddy's hand and have us rub his head or arms. I have held him and rocked him and I am hoping to lay down today on our bed and cuddle him! He is such a trooper! The little girl in the room by ours was a heart kiddo too and went down for xray with us and her mom asked about him and I told her and she said her daughter was here for Tetralogy of Fallot too she is 10! So I have made another heart mommy friend! clint has gone home to take Mason to baseball practice and see the kids do some laundry take a shower help his mom and he will come back later and then I am going to run home feed Cayne and see the kids..So thats today's plan.
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3 comments:
Continuing to pray for Maccoy and strength for you and Clint. Maccoy is an awesome little man, very strong in spirit. Blessings to you all.
Continued prayers. And thank goodness for the poopie! That first one can be hard after they've been medicated and sedated.
Oh honey, bless your heart, his heart, all of yours!! Reading these updates just makes me cry, rejoice, takes me back, all of the above! I had to go back and check my journal - thanks to Immanuel's spiking heart rates we were in PICU for four days. There were so many bumps that we didn't expect, the ones that seemed small became so huge & scary, what joy you feel over poop...all of it. Wow. I'm glad he's pooped & they're getting on top of the pain meds. Immanuel had to be on both of those diuretics also - I think it was called dixogin. He was in the PICU 4 days & still made it home in a week and did so well - Maccoy will also do wonderfully, I just feel it. I remember being scared to death when they had to call in 3 electro-cardiologists in a seemingly emergency-like scenario for his heart rate, having to put him on the pacemaker, feeling surely we were in for long-term trouble. He also vomited all the time, and it took a good 2 weeks before his pooping became truly "normal" again. He also didn't smile for 4 days. I'm so sorry I didn't get your text early yesterday but I wanted to tell you that he didn't seem himself for at least a week and even a bit beyond that. Coming home seemed to really make a difference in that. Even then, he was fussier & clingier and still needed more time to truly become himself again....but it will happen. With each day, each hour, things will improve. Gosh, I just wish there was more I could do for you. Please know how much we're thinking of you all, praying for you, the boys pray for Maccoy each night (as do we all!) and we are just sending so much love your way!! I'm so happy that you have such an awesome support system there and thanks go out to all of them - they are in our prayers also. Kisses to Maccoy & hugs to all of you!!! If you need ANYTHING, I'm only a phone call or text away. You are awesome! Also, LOVE the picture of the twins in the grass recently posted by luckyphotographer on fb. Hang in there, mama!!!
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