Things are looking up. We had a full weekend. Friday started with Gigi's slumber party sleepover and man those girl were crazy. Followed by a Saturday of errand running, Moms Night Out and a late night dance performance for the girls. Sunday was my Sis's birthday party and it was freezing in the desert! Lots of late nights, followed by early mornings, equals a very slow Monday for us!
Kam got to spend a extra time with this little peanut {Bridgit} this weekend and she really likes Kam. I'll keep trying to convince Carson to try for baby #3, because we already have a built in babysitter.
Owen has been feeling so much better and his oxygen sats have bounced back up to his baseline in the mid 70s. His energy is still a little low and he wants to relax most of the time. At the party Sunday, he was just as happy to sit on the couch and watch Ironman 1 and 2! That and, Gigi brought home her class pet this week (a gerbil, hamster thing) and Owen loved "the rat".
I did speak with Owen's team at Stanford on Friday and they said they have been discussing having him be followed more closely locally.. which would require Owen and I to move soon. We'll see how things go in March, but I will pack a bag just in case. I am hoping he is re activated on the list by the end of next week as it will be 4 weeks from his RSV diagnosis. Maybe he'll get an offer soon after?!
Can you believe that he's been on the transplant list for SIX MONTHS??!!! Where did the time go?
4 comments:
I was told by a transplant doctor that they have had HLHS kids like your boy that were doing "ok" but put them in the hospital to keep them bumped up on milnerone. This way they are highest on the list and will get a new heart quicker. You are absolutely correct when you said these kids spiral fast. My daughter went from "ok" to "We are going to turn off the machines in the morning." in just 17 days. We got the call just a few hours before we were going to remove support. She is home and doing fantastic but it could have easily been so different. Please don't wait. It is amazing how much better kids feel with a fully functioning 4 chambered heart. I cannot believe what we accepted as normal for her before transplant compared to how she is now. I was told by a transplant nurse that her worst day after transplant will still be 100% better than her best day as a hypoplast. I thought she was crazy but now I would have to agree. My daughter was in heart failure for an entire year. I don't know why people fear the transplant...yes there is lifetime drugs and monitoring but that is no different than how you are living now. I have followed Owen for a long time and even talked to you about the blended food diet. I feel the pain and uncertainty in your posts. You are his mother and know what is best but as a mom who is on the other side of transplant...it is a miracle. Bels mom in IL
Just remember Andrea....each child is different with different needs and different outcomes.
One childs successful heart transplant may not be anothers.(As we have witnessed on these blogs) It's your call and the Doctors, not another Mom's story!(((Hugs of Prayer for wisdom))))
Hi Andrea! I have nominated your blog for The Liebster Award. Please stop by my blog "Full of Light" to participate!
I didn't comment to put Andrea down. Yes this is my experience and everyone walks it a bit differently. But bottom line Owen needs a heart. My daughter should have died so many times and beat the odds but when she got the Fontan it put her into heart failure. We struggled for a year before her little body couldn't take it anymore. It was horrible and sad but the worse part was knowing how good she feels now. Cause I let the local doctors talk me into thinking it is best to hold on to your own heart as long as possible. It is amazing what a 4 chambered heart can change. I debated whether or not to post our experience for fear of misinterpreting my intention. Someone always gets offended when no offense was meant. Owen needs a heart there is no other solution. I am trying to reassure her that it is an amazing thing to witness. She has voiced it herself how a hypoplast spirals quickly. I watched several kids go from pushing trucks to needing ventilated within hours. No one can predict what will happen but I think Andrea knows time is running out. I am saying trust your gut too. The local doctors wanted us to try home milnerone therapy before transplant and my gut said no. She was running out of time. Within 14 days my little girl was on every medication and machine they could offer. I am not trying to scare you. I know you already are. I have enjoyed your blog, your optimism and seeing your family. You always believe you will have time but it just isn't so. I won't comment here again but I felt I had to encourage you to pursue transplant as many people think it's an end. It is a beginning. Bels mom in IL
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