This is an update I never expected to give you. Mainly because up until 6 weeks ago I didn’t even know it was an option and up until 3 weeks ago I didn’t know that it would even be considered by the team at Boston Children's Hospital.
Katy is coming home, once again without her new heart!!!!
Let me explain. This admission we knew or thought we knew would be THE admission, the admission that would be long and had no end in sight. The admission that was going to get us that much closer to a new healthy heart for Katy. The admission that would hopefully help Katy grow and gain good nutritional weight and combined with the miracle drug Milrinone work on reversing some of the damage being done to her lungs due to the extremely high pressures that they have been forced to work under for so long. Her Cath clearly showed us we had no choice Katy needed to be on Milrione and we needed to protect her very fragile heart and get her moved up to a !A the highest you can be on the transplant list. My need for Quality of Life for Katy & our family no longer mattered… it was time. I made peace with that decision even though it made my own heart hurt knowing that for the next x amount of time or family would be in turmoil. I didn’t have any way to change this we needed to do what was medically best for Katy.
Thus, far this admission has done all that we have wanted and oddly enough has been pretty smooth. Although, Patrick is having a hard time, being passed around and is a bit clingy when he is finally is with us. I am tolerating not having a full nest when I go to sleep at night. I miss watching Katy & Patrick playing and chatting.
Do you want to know what I miss the most… my amazing, strong, funny, playful, careful, comforting husband. I miss being wrapped in his arms before I fall asleep. I even miss his snoring. I just miss being together. I miss all four of us cuddling in our bed on a Friday night or Sunday morning and watching a movie.
As we were approaching our 3rd week of hospital living… I was researching our options and trying to figure out if there was a way around us being stuck in the hospital. Why can’t we have the best of both worlds… if Katy is responding so well to this treatment while in the hospital, can you imagine how well she would be doing if we were home?
I researched, and researched, I called on my friends that have medically fragile children and asked how they got things done… The common response was to ask the team “What are you doing for Kate here, that we can’t do at home” What are the risks of us taking her home with a Picc line and IV Mirlrione. I was surprised to heart that Dr. Blume responded with it is something we can consider lets see how she does. I was hopeful. Then I went to see if anyone at other Transplant centers have been able to go home and keep their 1A Status. The findings were disappointing… I found responses as the ones shown below:
On a Transplant board I asked:
“Has anyone gone home on Milrinone with Picc line and stayed a status 1A? Any info would be much appreciated.”
“From our experience, 1A means you have to remain hospitalized as long as your listed. Cabell was on milrinone through a PICC and it took an act of Congress just to be able to take him down the hall to the hospital library!”
“My niece was 1A with PICC Milrinone and remained in the hospital ... They wouldn't release her to go home because of the status and Mil.”
“my daughter is on everything you listed, and we were told she wouldn't be able to leave the hospital”
“I'm with the rest on this. In order to remain a 1A status you must remain in hospital is what I was told.”
“We were told that if we even left the Cardiac ICU to go to another floor to visit we would get booted down the list from a 1A.”
Needless to say those responses were a bit heartbreaking and made me think that more than likely Katy would have to wait inpatient. Although, we all know I don’t take a NO easy so I kept looking and that is when I found.
”Yes, my son was a 1A and on milrinone and we were at home when we got the call. We live about 2 hours away and he was on o2 and milrinone and he went hunting with his daddy 5 days before he got his new heart. I was changing the milronone every three days and a nurse came out to change the dressings for the pic and i flushed the pic line twice a day. Please feel free to ask any questions you have.”
That was all I needed to see…somewhere, someone went home on it and they lived 2 HOURS away we live 15-30 depending on traffic. So I researched and researched and I found that although it is not common practice it can and has been done in both Stanford and Children’s Primary Hospital in Utah.
We knew that doing this was not going to be easy. After much discussion with the team about the risks, the details, etc. etc. we decided that the minimal additional risk (which really is almost non existent, considering we see no reason that Katy would go into cardiac arrest) She has been monitored for three weeks on the Milrinone and is having no issues at all. I know the chance of cardiac arrest sounds scary, and believe me it is. But, it has always been a risk since the day we brought her home.
Although this transition to home will be a bit more complicated… lots of medical supplies, visiting nurses, flushing the Picc line, weekly clinic visits. Mike and I both agree that this is what is best for our family.
Quality of life has always been important to us, and when we looked at this option from all angles this option made the most sense. No one knows how much time we have here and although we hope and pray a heart comes sooner than later and Katy goes on to live a wonderful full life, the very real reality is that she may not. We have no idea how long we will have to continue to wait for a new heart, we also know that we don’t have another two years with this heart if it continues to deteriorate at this rate.
Knowing that information, we would prefer to have time together as a family while we wait, instead of being sleep deprived and separated from one another. I feel that if something were to happen to Miss Kate, and we spent her last months on this earth in a cramped hospital room, spending the majority of her time in a hospital bed I will regret it. That said if the team did not feel that this was a safe option for Kate… we would not even be discussing it. If we had any doubt in our ability to care for Katy’s Picc line and new meds… we wouldn’t be doing it.
Although, this has never been done at Boston Children’s with a child as young as Katy. I am excited that Katy is once again paving the way. Procedures are being put in place and maybe it will help another child get to wait at home. I am not saying that this option is a safe option for everyone. But, I do think it is something worth talking about.
That said the plan is to go home on Friday the 10th. Plans can always change, but I don’t expect any surprises so I think it is safe to share this with all of you.
Thank you for loving our girl, and supporting us, your encouraging words. They mean the world to us.
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Here is what we have been up to: