So one thing to expect over the next few months is for us to be able to plan for absolutely nothing. This is a pretty difficult time for babies with his surgical repair set. So here is sort of what “baseline” should look like for him for a while.
Rowan right now is a bit blue. That’s expected for him and most babies at his repair stage. When he breathes, he pulls a little bit at his chest and looks like he is struggling a little (sort of tiny ‘huffs’) – especially when he is upset. He has completed the Norwood. After his surgery, most babies have oxygen saturations of 75 to 85 percent. If you or I went to the doctor, we would have saturations in the high 90s. So he is going to look a little blue/purple to us for a while. That is expected. In fact, if he has saturations in the 90s – that is a very bad sign for him at this stage. So he may look blue or purple, and even a little more so when he coughs or gets mad and cries. Nothing to be concerned about. If he actually gets dark blue around his lips or on his hands and feet, that would be concerning. To give you an idea, THIS is bad. We may have to take him in a lot. Kids are normally pretty medically unstable at this point in the repair process.
His next surgery is the Glenn. This is normally between 3 and 6 months of age (depending on surgeon, how fast they grow, and how their body handles the shunt). So Rowan’s timing will depend on his growth between now and then. The recovery time from surgery to discharge for that surgery is normally about 7 days. After that surgery, Rowan may look less blue, but will still have saturation levels from 75 to 85 after that surgery.
His final surgery, the Fontan, will be his last “fix”. Typically, it is done somewhere between 1.5 and 5 years old, depending on the source you read and the surgeon. After it, he should be a pretty normal color and have oxygen saturations in the 90s.
That should be his final fix and he should be as “normal” as normal for him from a heart standpoint after that. We are banking that Cystic Fibrosis does not put too much of a strain on his lung function until the repair is completed.
Having Hypoplastic Right Heart and Cystic Fibrosis is pretty much unheard of. We’ve found exactly 1 study of a child who had Hypoplastic LEFT Heart and CF. They did need their repairs done earlier. That child had the Norwood done shortly after birth, the Glenn, and then needed the Fontan at age 2.
So here is my point – he’s going to be sick and blue a lot until his next surgery. It sucks, it’s scary and nerve wracking, but for him, it is okay. It’s very unlikely that he will have a sudden problem spring up – should he be having heart issues we would likely see a bit more of a gradual change over a day or two.
Truthfully, I doubt we’ll sleep over the next few months. The shunt he has in his heart right now is one of the things that can cause problems between the first and second surgery. During the Glenn, they will remove it and it will no longer be an issue. Really, we are going to be fighting to get him to the Glenn, after that, it will be a (maybe easier) fight to get him to the Fontan…and after that, maybe we’ll sleep.
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