Well this is a blog I didn't think I would be writing at this point (and it's long, sorry), but Andrew is looking so much better now...because he is so much better now! Cardiology and the transplant coordinator wanted to stop by and talk to me today about Andrew's mystery echo he had 2 days ago that we couldn't get anyone to tell us about.
Andrew's heart has significantly improved...meaning improved so much that they are moving him to status 7 on the transplant list, meaning he is currently temporarily inactive. They said they don't know why or how, but his heart is in better shape now then it was when they discharged us after surgery in December. They also said that his heart was functioning in two different rhythms in different parts then, and now it's synchronized and functioning all together (one rhythm). He has regained almost full motion in his right side (just a little slow on the hand grasping, but he's doing it and getting stronger every day since his stroke...5 days ago!!) Five days ago they didn't know if and when he would regain that strength back...
They didn't have many answers for why it's dramatically changed now, but God had different plans for Andrew…That's the only explanation. Medically, there isn't one. They're stumped. It was so poor before that he said it was doing nothing on it's own, no squeezing, and had no room to get worse. He just smiled and said this is very good for Andrew because a transplant for him is very high risk at this time and we want to keep his own heart as long as we can, get him HOME, and get him stronger! Yes, HOME!! What seemed so distant before, is now possibly in the next few weeks!! God is good, and only God could give our sweet Andrew this miracle! He is not being set off radar, just status changed on the transplant list and if needed he would go right back on to critical and right back where he was with the time he waited already.
His guess today was the common cold and tummy virus really hit his heart and that's all he could come up with. They've not seen it where they bounce back so quickly like that often, if ever before. Today I have to report that he absolutely melted my heart and I probably had the biggest smile on my face but he was happily playing and smiling at me and his nurses. He was talking to us again and sticking out his tongue. My sweet Andrew was back, limb strength and all.
I walked away crying and felt God's love so deep in my heart that it was almost overwhelming. Saturday night after I watched seizure episode after seizure type episode I begged God to take them from my son. It was crushing my heart. I never know what God has laid out in the future for us… I do know that His will, will always be done either way regardless. No matter what I want in this lifetime. So I continued in fervent prayer and I know that so many others have covered my sweet boy in prayer too. I just wasn’t ready for the outlook we were facing…
2 days later he had the new echo done....2 days after that here I sit writing that they can't figure out how his heart improved so quickly and so much....but I know that it's because we still serve a merciful and loving God. His heart is not healed 100%, but it is healed enough that it will buy him some time until transplant or his next major surgery. It is healed enough that we can possibly be going home under one roof again in a few weeks with all of our children and this nightmare be a thing of the past for a while.
Andrew is not out in the clear right now. He will always stay "listed" and the notes for "Severe heart failure" for all of this are there, so he would be closely monitored if they get him off the milrinone and doing well enough to go home. Even then he would be monitored closely at home. The plan for now is to get him up to full feeds and tolerating those this week and Monday regrouping and seeing where he's at and then hopefully trying to wean milrinone to off and him maintaining this level of function to get home. If he cannot tolerate it then he would go right back on the active critical status and continue waiting because he would be listed as medication dependent to live. Either way we still have a very long journey ahead of us, and transplant somewhere in his future. It's just hopefully being deferred a little while longer. Andrew had 2 major surgeries in one in December and needs the time to gain strength and size back. His stroke he's had would also make it very high risk to experience a worse stroke on bypass in surgery if he got his heart this soon too. Blessings all around, and can't thank you all enough for your prayers. God can still step in if He has another plan in life for you, no matter what anyone else says. I’m thankful it wasn’t my son’s time yet…
Psalm 73:26
26 My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.
Andrew's verse ♡
Andrew's heart has significantly improved...meaning improved so much that they are moving him to status 7 on the transplant list, meaning he is currently temporarily inactive. They said they don't know why or how, but his heart is in better shape now then it was when they discharged us after surgery in December. They also said that his heart was functioning in two different rhythms in different parts then, and now it's synchronized and functioning all together (one rhythm). He has regained almost full motion in his right side (just a little slow on the hand grasping, but he's doing it and getting stronger every day since his stroke...5 days ago!!) Five days ago they didn't know if and when he would regain that strength back...
They didn't have many answers for why it's dramatically changed now, but God had different plans for Andrew…That's the only explanation. Medically, there isn't one. They're stumped. It was so poor before that he said it was doing nothing on it's own, no squeezing, and had no room to get worse. He just smiled and said this is very good for Andrew because a transplant for him is very high risk at this time and we want to keep his own heart as long as we can, get him HOME, and get him stronger! Yes, HOME!! What seemed so distant before, is now possibly in the next few weeks!! God is good, and only God could give our sweet Andrew this miracle! He is not being set off radar, just status changed on the transplant list and if needed he would go right back on to critical and right back where he was with the time he waited already.
His guess today was the common cold and tummy virus really hit his heart and that's all he could come up with. They've not seen it where they bounce back so quickly like that often, if ever before. Today I have to report that he absolutely melted my heart and I probably had the biggest smile on my face but he was happily playing and smiling at me and his nurses. He was talking to us again and sticking out his tongue. My sweet Andrew was back, limb strength and all.
I walked away crying and felt God's love so deep in my heart that it was almost overwhelming. Saturday night after I watched seizure episode after seizure type episode I begged God to take them from my son. It was crushing my heart. I never know what God has laid out in the future for us… I do know that His will, will always be done either way regardless. No matter what I want in this lifetime. So I continued in fervent prayer and I know that so many others have covered my sweet boy in prayer too. I just wasn’t ready for the outlook we were facing…
2 days later he had the new echo done....2 days after that here I sit writing that they can't figure out how his heart improved so quickly and so much....but I know that it's because we still serve a merciful and loving God. His heart is not healed 100%, but it is healed enough that it will buy him some time until transplant or his next major surgery. It is healed enough that we can possibly be going home under one roof again in a few weeks with all of our children and this nightmare be a thing of the past for a while.
Andrew is not out in the clear right now. He will always stay "listed" and the notes for "Severe heart failure" for all of this are there, so he would be closely monitored if they get him off the milrinone and doing well enough to go home. Even then he would be monitored closely at home. The plan for now is to get him up to full feeds and tolerating those this week and Monday regrouping and seeing where he's at and then hopefully trying to wean milrinone to off and him maintaining this level of function to get home. If he cannot tolerate it then he would go right back on the active critical status and continue waiting because he would be listed as medication dependent to live. Either way we still have a very long journey ahead of us, and transplant somewhere in his future. It's just hopefully being deferred a little while longer. Andrew had 2 major surgeries in one in December and needs the time to gain strength and size back. His stroke he's had would also make it very high risk to experience a worse stroke on bypass in surgery if he got his heart this soon too. Blessings all around, and can't thank you all enough for your prayers. God can still step in if He has another plan in life for you, no matter what anyone else says. I’m thankful it wasn’t my son’s time yet…
Psalm 73:26
26 My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.
Andrew's verse ♡
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