Discharged

Bnp 1100!!!!! And we are discharged! Woot. Coming back in 2 weeks but feeling much better on his new combo of meds

To list or not to list

We  just got home (this picture is for Grammy Margaret who made this hospital shirt for Mac.)
Our animals are all happy (thank you Natascha.) Mac was singing and dancing around - he looks so much better.
His cardiologist still wants to list him for transplant and said he is very sick, sick enough to be listed as a 1A and living in the hospital waiting indefinitely for a heart. I asked for a few more weeks to let his new med changes take effect so we are going back up in 2 weeks. We have to decide where we go from here.

Heart failure sucks

Since January’s cath, Macsen has been admitted twice to Children's of Alabama.
Both admissions were to try new  or tweak his heart failure medicines. They are really, really pushing transplant - telling me we shouldn’t wait too long bc then he could be too sick. THey tell me the wait will be very long and he will need to live in the hospital to be considered. We will need to meet all sorts of criteria. We live more than 3 hours from the closest transplant center but they only do about 10 heart transplants a year. So if transplant is the path we are on now it looks like we need to move near a high volume center - like Texas Children’s or Boston. A transplant is a not a cure and it comes with so many risks - I don’t want it to be our only option now. I want the medication to work. I want more time

Another day admitted

Playing with his sisters on the balcony today. We are supposed to be making him run around so they can see how his heart reacts. His sisters do a great job with that❤️ Mac had an ok night - 2 potty visits, 4 blood pressure checks and a blood draw all before 5 am.
His bp dropped pretty low overnight. There is talking of adding in a 3rd diuretic. And a lot more talk along the lines of “it’s time to commit to transplant before we wait too long and he declines too far.” There are 3 other kids waiting on our floor - one since January who is 15, one since August who is little like Mac, and a third who has been waiting, living at the hospital since June.

Goodnight everyone ❤️Tonight before bed the girls came and we all made slime in the lobby. We also played “telephone” (where u whisper a word or phrase into your neighbors ear and everyone passes it down to the next person.) It’s always hilarious - especially when Daddy plays bc after 16 years of working with helicopters his hearing is terrible so there’s not telling what he’ll think you said. 

Mac got a shower (our room has no tub - boo hoo) and was so ready for bed. Hes been very tired today and a little clammy. He’s not eating or drinking well again. We know he has more labs scheduled for 5 am (WHY!!!!??? 5 am?!!!) so results will be back by the time the Dr rounds. And several vitals checks/bp checks overnight. I hope he can still get some good rest in.
They restarted his enalipril but only 1/2 the dose he was on before.
I am feeling so afraid that I am going to lose him so I really would appreciate prayers to help me stay strong. The BNP going up really hit me hard today

Admitted to UAB

Aaron sent me this picture of Macsen pretending to be asleep.
He’s all checked in and flirting with his 2 nurses.
They won’t start the Enalipril until the morning - said they want to monitor him tonight before starting it.
The girls and I are all checked into the Ronald McDonald House. Our room has 3 beds - none of us have to share - but both girls have warned me they may be sneaking in the big bed with me lol

Ugh - hospital stay coming up

Macsen’s cardiologists want to restart the enalipril but they want us inpatient when we do it. Trying now to set it up so we can go for the weekend (and not miss too much school and work.)

Meeting with the transplant team soon

Good news - Macsen didn’t have any sweating, lethargy spells today. Not great news - He did have a few periods of his “heart beeping fast.” It went from the 60s and 70s to 120s for no reason - no running or activity at all. His appointment is in 1 week in Birmingham. We are praying his BNP has come down and his heart function looks visibly improved via echo but are trying to prepare ourselves if that is not the case. We are supposed to meet with the transplant team then as well and I don’t think I have never dreaded an appointment so much in my life :( We know Macsen has very high antibodies - in the upper 80s - and at this time it would be very hard to match him up to a heart. None of this is easy and I am feeling overwhelmed by all the variables, decisions and the weight of all those decisions. What center do we use? When should we take him? What about his sisters? We will know more in a week - hopefully. And I pray we can continue to improve at home on his medication

Low BP?

And it happened again. This was after about 2 minutes. It’s like a spell that overcomes him. He sweats, can’t open his eyes and just wants to sleep. I have a call into his new card and talked to his pediatrician. I think his blood pressure is dropping too low now - a risk of his new meds. It happened around the same time both days. About 3 hours after his meds

Update - we think his blood pressure is dropping too low. He needs his meds adjusted

Off day

Mackie had an off day today. He had some gi issues and all of a sudden he was lethargic and unresponsive, sweating and his extremities went ice cold. His pulse ox wouldn’t pick up bc he was so cold. He was was pouring sweat. I talked to his pediatrician and after I gave him fluids and he perked up we decided we should just monitor him for a while. He seems good tonight. We lost another heart warrior today - suddenly. Always a little piece of my heart

Talking transplant

As of Monday, Macsen’s BNP hasn’t really come down much. It was in the 1700s. It hasn’t gone up but it’s not coming down like we hoped and prayed for. We have an appointment in Birmingham in a few weeks and are supposed to meet with the transplant team then as well. 
I am so.... resistant to transplant. It is not a cure and we have seen so many of our heart buddies who survived surgeries and years of living with a heart defect, pass away after getting a transplant. For some it happened within days, some months, some even a year later.
Transplant comes with so many strings - a dead immune system so you don’t fight your new heart but then can’t fight even a common cold. 20 medicines a day including multiple antibiotics and steroids. An almost threefold risk of getting cancer and the eventuality that you will need another heart and possibly multiple organ transplant.
And he’s only 5. If, with meds, we can get him older, and bigger there will be more organs available. They are very scarce. What if his medications just need more time and he will get stronger?
New transplant rules mean that for him to be on the top of the list he has to be living in the hospital. No longer can someone wait at home for the call :(While we were at the hospital this last time we met a little girl who had been living in the hospital for 7 months - waiting for a heart. The cardiologist at Children’s of Alabama warned us we could wait too late to list him - that he had seen kids like Mac suddenly nose dive and it was too late to get all the requirements done for transplant.
Because there are many requirements. He can’t have too many antibodies - something he could have gotten from all the blood transfusions during his surgeries. He has to be 100% caught up on all his vaccines - something we were delaying until he wasn’t so sick but now will have to give him anyway or no transplant team will give him a heart :( And the transplant team will examine our family, our support system, and so many other factors to determine if Macsen deserves a heart. It’s a lot and something I pray we have more time to do.