I feel like I’ve been punched in the gut and I can’t catch my breath. I’m gasping for air, but it just isn’t coming. I’m gulping back tears and it just makes it that much harder to breathe. Maybe this is how my littlest guy feels most of the time. God I hope not, it is almost unbearable.
Today my littlest gut was suppose to have a procedure to get a better look at the scar tissue below his vocal chords so we could come up with a plan on how to proceed. About an hour before the procedure, his do to came in and told me that they were going to hold off on the procedure a few more days until he was a little healthier. They were concerned that going in would just inflame his airway more and that he would end up intubated. I felt a little upset at the idea of still not having answers and the ability to plan, but mostly I felt relieved because I was worried after talking to the anesthesiologist yesterday. To help the part of me that needed answers and the ability to plan, I had the doctor go over the options of what might happen once they had the chance to get a better look and what the time line was like. Here is what I was told:
It could be anywhere from two days to a week before he will be healthy enough to do the procedure just to look at the scar tissue. Once eh get in, it will depend on how inflamed the airway is whether or not they can attempt to fix it that day or if they will have to put him back under another day to fix it. If, by rare chance, the problem ends up being just a polyps or cyst, they should be able to take care of it right away. The likelihood, however, that this is the problem is extremely low. The less invasive solution would be to do the balloon dilation he had previously talked about, but this procedure isn’t as simple as he first made it sound. If it looks like the dilation might work and they do it, he then needs to be intubated after for about two days in the ICU, then observed out of the ICU for another 3-5 days, so we are looking at an additional week in the hospital, if all goes well. Here is the new part he hadn’t told us yet. A month later, my littlest guy will need to come back to the hospital, go under again, and have it all checked out and probably be dilated again and spend another week in the hospital. They will likely do this three more times. After the third time, there is still a 60% chance that this will not have worked and they will have to open him up and do reconstructive surgery on his airway anyway. If the take a look at the scar tissue and decide right away that he needs he reconstructive surgery, he will be in the hospital an additional one to two months and then could still have to do the same process, just in reverse, with the repeat dilation once a month for three months. Even after all,of this, it is still only a 90% chance of success and he could end up with a tracheotomy which may or may not be permanent. So basically, we are looking at another 3-5 weeks in the hospital at a minimum and several more hospitalizations through the rest of this year. This was not at all what I expected.
My mind immediately started running. My poor little guy was going to spend the majority of his first year of life in the hospital. He was going to have multiple procedures and be put under anesthesia several times, which was a risk in and of itself. He was going to be in the hospital when he turned five months old in a week, and possibly when he turned six months old. Instead of being home working on tummy time, mastering rolling over, and learning to log roll, he was going to be in a hospital bed hooked to tubes. He will probably back slide on all the progress we worked so hard to make with him nursing and taking the bottle because they are only tube feeding him now. He could end up with more eating issues and have trouble eating solid food because of this. I might not be able to breast feed him anymore and will probably never get to the day I’ve been longing for where we ditch the breast pump and bottles and I’m just able to nurse him on demand whenever and wherever like I was able to with my other boys. I wasn’t even willing to let my mind go to the thought that he could end up with a tracheotomy permanently.
Then there are my three other children who are 6 and under. We were just starting to get life back to normal after three months of upheaval this past winter into spring. My kids had such troubles with everything then. We were just finally getting all three boys sleeping back in their own beds, getting over reactionary potty issues (and were even getting ready to potty train the two and a half year old this month), getting behaviors back under control, and giving them a sense of consistency. I have my oldest in tutoring twice a week and have been really trying to work on his math and reading skills at home in order to catch him up after a big slide in academics at the end of last year. Now we are looking at starting a new school year with the baby back in the hospital and mom living at the hospital with him (because children’s is in the city, it is too far and too much traffic for me to travel back and forth like I did when he was in he NICU). Plus, the boys have had he baby home for just about two months now and are used to him being there, now they have to get used to him not being there. My four year old is obsessed with the baby and constantly wants to be near him and help out with him. My oldest feels huge responsibility about needing to protect his younger brothers and was just expressing his concerns to his therapist yesterday about needing to protect the baby. Now they can’t even visit him because he is in isolation due to the virus.
I think of all the things I will miss out on with them over the next few weeks. Not only will I miss the everyday moments like meals and bedtime, but I will miss the end of their summer. There goes all the plans I had for them, all the crafts, trips, and adventures I had planned. I won’t be there for the local celebrations and parades next month. I won’t get to experience the blissful joy my four age old experiences at the fire fighter pancake breakfast in our town next month. I won’t get to sit on the porch and watch them ride bikes up the drive. I won’t get to take them to the zoo, the beach, or blueberry picking. There will be no Thursday evening farmers market, picnic dinner, and playtime at the park. I will miss all of my four year old’s Tball games and the picnic dinners we do at the park on those nights. I won’t be able to take my boys shopping for back to school shoes or take my oldest to pick out school supplies and a new back pack. I might not even be there for meet the teacher night, the preschool back to school picnic, or even the first day of school. I might even spend my birthday watching my youngest recover from surgery instead of seeing my oldest off to first grade and taking my younger ones out to breakfast like I’d planned.
Then I think a head to the months of procedures and recovery we are looking at for my littlest guy. What will those months hold for him? Will he miss out on things like his first Halloween and trip to the pumpkin patch? Will he be around for thanksgiving and his three older brothers’ birthdays or will I be torn between being with him in the hospital or with my three other boys to celebrate? What about Christmas and all the traditions? Will his first Christmas be ruined? This whole thing goes beyond this next month or so. I don’t dare to even look past the end of this year and any truly lasting problems he could have.
For this very moment though, my husband is trying to keep me grounded and thinking about the next few days. Those I’m not worried about. My parents will be here until the weekend, then they have to head home and are off traveling for most of the fall. They have already done more than I could ever thank them for anyway. The question now is, what do we do with the other three boys for the rest of the summer? How do we give them some sense of security and consistency amidst such chaos? Who watches them so my husband can work and earn a pay check so that we can pay the bills? How do we afford childcare for three boys full time for several weeks, possibly months? We were already playing catch up before the baby was born because our move here set us back and we needed to recover, then all the expenses of mine and the babies hospital stay happened. I was just starting to try to figure out payment plans for all those bills and now we have a new host of costs. Most of the medical stuff should be paid for until the end of the year, we have certainly hit out limit, but it is all the other things, like the huge child care expense, gas, food for me while I live out of my son’s hospital room, and unexpected little expenses that throw things off. It feels wrong to be so broke and in such a bad state when my husband has such a good job, but as many families know, it doesn’t take much to put you under water. No one ever plans for this types of things to happen. Worst of all, I just don’t have the mental capacity to deal win all this because I just need to focus on my kids and what needs to be done for them (sorry bill collectors).
So now the question is, where do we go from here? How do we continue to survive in limbo? Hopefully I can figure it all out once I’m able to breathe again and hopefully my littlest guy will be able to breathe better sooner than later.
*disclaimer and apology, this post was not proof read or edited before posting.