The big issue right now is his lungs they are retaining so much fluid because of his intact septum and they have to get them cleared up before they can even attempt surgery on his heart. The doctors yesterday took us into the consultation room and told us that things werent looking good. They said that from the looks of it he had some kind of pulmonary lung disease and would need a heart/lung transplant. The problem with that is the list is so long and he is so sick that he wouldnt make it waiting on the transplant. It was devastating. They told us they were going to try a few more things and give him a few days to see if things cleared up so they could do a cath on his lungs Monday to check his lungs.
They started him on some more diuretics to try to clear up some fluid from his body. He is now on Lasix, Diuril, and Aldactone. Hopefully it will help clear up his lungs so they can go ahead with the surgery. The cardiologist that listened to his lungs tonight said they sounded better and sounded like they were clearing up. I hope that is the case but we wont know until tomorrow morning after his chest xrays. I get so frustrated with all the doctors because it seems that every doctor is telling us something different. The 2 doctors yesterday that talked to us basically told us that there was no hope. Then we talked to the surgeon and he told us there was still some hope. The first cardiologist this morning told us his lungs still sounded bad then the one tonight told us they sounded good. I just wish we could sit down with all of these people at once so that we could get a straight answer!
This has been the hardest week of my life. I havent got to hold my baby, if you touch him too much he gets too excited and sets his machines off. He just lays there with his sad eyes open looking at us wondering why we dont pick him up and comfort him. And then there is his cry you can tell he is crying by the look on his face but you dont hear a sound. It is truly the saddest thing Ive ever seen.
I might add that nobody warned me about the great joys of pumping! I cant get anything done or do anything without having to schedule around pumping! My schedule goes a little something like this. Pump, pee, pump, brush my teeth, pump, eat, pump, pee, pump. Ok you get the picture. I dont know how a person can keep this up for that long its exhausting!
I have to get off here now so I can pump and then get to sleep just to wake up in a few hours and pump some more :) I hope that everyone had a Merry Christmas!
P.S. I had the pleasure of meeting Ruthie and her mom Laura at the hospital this morning! They came for a visit to tell everyone Merry Christmas! It is so nice getting to meet other heart moms! I also spoke with Kathy on the phone this evening. It was such a pleasure talking with you. Jake gives me so much hope for my sweet Parker. I hope that next year at this time I am helping another new heart mom through this journey just like all of you have helped me! It means the world!
Hang in there! Praying for you guys...
ReplyDeleteAnd yes, I did the pumping routine in the hospital too and it is a lot of work. I think I eventually bought like 6 sets of pump parts just to cut back at least on the cleaning portion. Then I would put them in the dishwasher at night or wash and steam bag them all at once. Just do the best you can. Praying that the doctors can give more concurrent responses too. It is frustrating with all the varied opinions, but sometimes it's good that their are some who are hopeful. Praying, praying, praying!
Adam, Heather, and Parker:
ReplyDeleteI wish I was there to give you all a big hug! I HATE this for you and wish there was something I could do to make it better. I remember how hard it was to see that sweet cry but not hear any sounds and to have to sit by the bedside and not be able to just pick him up or even touch him whenever I wanted. Damon was very jumpy like Parker. I pray that you will be allowed to hold him soon. Just keeping praying and believing in miracles. I am with you there in my heart.
Sarah
www.blessdamonsheart.com
P.S. Heather so sorry I didn't warn you about pumping! It is a full time job.
So glad you had a chance to talk to Kathy. You guys have a lot in common. Kathy was amazing with Jake at the hospital and she is such a positive and hopeful mommy. I'm sure she'll be able to provide you a lot of support during this journey.
ReplyDeleteAnd yes, this pumping "thing" is ridiculous. Its all part of the journey.
Getting the differing opinions is frutstrating, but sometimes legitimate. These kids can turn on a dime - from bad to good or good to bad. Just roll with it as much as humanly possible.
We're all here for you if you need us.
Heart hugs,
Stacey
Saying so many prayers for you guys in the days ahead. I know how frustrating it can be when everyone seems to have a different opinion. Don't forget that you have the right as his parents to call a meeting of the minds anytime you wish. You guys are his only advocates right now so if you want some straight answers don't be afraid to corner them.
ReplyDeleteI'll be sure to include a prayer request for Parker and your family in my next blog post.