Overnight Finn remained stable. We haven’t added any intervention so we are considering that a “good” thing. Good is relative as we learned back in the NICU. His heart rate had two major scary drops last night (60s and 50s) but they came back up so quickly that no one seems overly concerned. It’s definitely something to watch but no immediate action is being taken.
The intensivist and nurse attempted to fortify Finn’s feeding today. As a pro-breastfeeding mama bear who prides herself on being knowledgeable along with an arsenal of research based information I quickly jumped in. Before we were admitted I did EVERYTHING in my power to get Finn to gain weight. This included bottle and syringe feeding, weigh ins for feedings to see what he was gaining, I met with an extremely experienced lactation consultant and even had my breast milk composition tested. When Finn’s team put in the order to add 10% formula to his breast milk I asked why. They said they wanted to increase his caloric intake to 22 calories per ounce. I knew he was gaining weight because he was meeting his one ounce a day goals. I also knew from my analysis of my BM that it was an average of 23.5 calories and 50g of fat per ounce (my lowest milk at the beginning of a feed was 22 and highest was 25). I argued that math and science told us that this is unnecessary. He was gaining, he was tolerating his volume and my breast milk met or exceeded their caloric goals. The nurse talked to the nutritionist and doctors and they finally agreed that it wasn’t needed. Score one for mama bear. They definitely have Finn’s best interest in mid, but that doesn’t mean asking questions and knowledge sharing isn’t needed. I am proud to be an advocate for my son.
Dr. Vezmar, our primary cardiologist, returned from vacation today. We had our monthly planned in clinic visit scheduled for Friday so I am sure he was surprised to see us and hear of the last week’s activities. He was up to speed on our current situation and wanted to talk both long and short term outlook. Short term we already knew what we have to do. Rest, kick the rhinovirus, eat. His best case scenario is that will take a month. I knew we would be here a while, even weeks. But when weeks turn to a month (or more) it starts to hurt a bit. Long term we have three general scenarios:
A.) Finn gets better clinically and potentially better overall. We still know that he may not show any signs of HCM improvement until as early as six months. Dr. Vezmar believes that this is more of stretch now that we’ve seen what a little common cold can do to our boy. If Finn came in coughing, sneezing and runny nose with signs of labored breathing and other issues it makes sense. However, he hasn’t shown any outward signs of the rhinovirus. So this cold isn’t a bad one and it took him down. Hard. Option A is very hopeful and Dr. Vezmar said it’s okay to hold onto this one for now.
B.) A heart transplant. This is frightening. I don’t know anyone who has had one and I refuse to Google the statistics yet. A lot of things will have to align before we go down this road or even get on a list. He will have to have a lot of tests to be sure that he qualifies. This could also be off the table depending on the results of the WES and some other muscle and skin tests.
C.) We can’t do anything. At all. Other than keep him safe and comfortable. There isn’t much to say about this option. Basically if he has some metabolic reason for his HCM he wouldn’t qualify for a transplant and likely wouldn’t get better on his own.
Of course there are scenarios in between. Scenarios where we find out that there is a genetic reason for his HCM and are able to treat it or at least some symptoms. It’s medicine and it’s not black and white. They are always coming up with new treatments and gaining knowledge on hearts. Throughout our stay here I have seen children come in, get open heart surgery and leave within days. Children are resilient. Medicine is always changing and they can do remarkable things. It just may take time. We will do whatever this child needs no matter how long it takes.
He WILL get better. I tell him that everyday. The doctors are doing everything they can. I am doing everything I can. His dad and brother are doing everything they can. It’s up to him and he has all the support and love that he needs to do it.