Shattered by surgery
I haven’t had time to write much lately. I’ve been so busy with four boys at home and can barely keep our busy schedules straight. I had to go out and buy multi colored dry erase markers for my dry erase calendar so I could color code everyone and their activities in order to attempt to keep track of our schedules. Often times I feel like I spend entire days trying to schedule and get to doctors appointments for my littlest one. Throw in there cleaning and making bottles, as well as feeding my little guy, and the whole day is taken up. I feel totally drained and exhausted by the time I get us all home from these appointments. Today, however, I feel far more than just exhaustion after my son’s appointments at the Children’s Hospital in the city. I feel shattered.
The cracks began to start again on Monday of this week. My littlest guy has been home from the hospital for almost two months now and I’d been working hard to glue all the pieces back together since his 77 day stay in the NICU finally ended. It was really hard at first because not only was I adjusting to life with four kids now, but I was also adjusting to caring for all his special needs at home without nurses. We spent a great deal of time just doing follow up appointments and trying to get him to eat. I felt like we finally hit a turning point when, about a month ago, we convinced all the doctors to let us do a trial run without the feeding tube. He hated the NG tube so much and was constantly pulling it or spitting it out. By the end, we were reinserting the tube at least once a day. It was making us all miserable. Once we were okayed to go without the feeding tube, we became like a normal little family, getting back to our normal little lives. My littlest guy began eating from the bottle better and sleeping better at night. We tried our hand at a few family outings, we even managed a trip to Costco with all four boys on a Saturday! That to me said we were making it in this world! The big problem though, despite all this, is that my littlest guy is just so darn little, and that doesn’t seem to be changing. He has not been gaining weight like he should and has been labeled as failure to thrive. So on Monday, the nutritionist informed me that we were probably going to have to put the feeding tube back in. I was heart broken by this. My poor little guy has been so much happier without it. This, unfortunately, was just the start of our bad news this week. I was starting to feel some cracks again.
Today my little guy was scheduled for two procedures at the Children’s Hospital in the city. He had a swallow study done, which came back ok, though he is having some issues with swallowing properly, but nothing major. The other procedure was a scope with an ENT doctor because he is having noisy breathing and retraction of his stomach and neck when he breaths, as well as turning purple around his mouth if he cries for more than a minute or two. The ENT scope did not give us happy news. Apparently, there was damage to the back of his throat when he was intubated at birth (which my husband had said they had trouble doing). The damage caused scar tissue just below his voice box which has tightened his windpipe so he is basically breathing through an opening the size of a straw. This is also causing him to burn extra calories just to breath, which could be why he isn’t gaining the weight he needs to. So now they need to do another procedure in which they put him under general anesthetic and go through his mouth to get a better look at the scar tissue with the hopes that it can be fixed by basically inflating a balloon to break up the scar tissue and then give him steroids to prevent it from healing tight again. This would most likely only be a 2-4 night stay. However, if they get in and find this won’t work or this procedure is unsuccessful (it has a 60% success rate), then they have to open up his throat and go in and deal with the scar tissue and then cut some of the cartilage away from his Adam’s apple and use it to prevent the scarring from healing too tight (this has a 90% success rate). This option comes with a 2-4 week stay in the hospital. If that doesn’t work, the last ditch effort is to give him a tracheotomy and have more surgeries as he gets older. While I’d rather he not have to go through any of this, something has to be done, I’m just hoping it is the least invasive one. We won’t know which option is happening or how long he might be in the hospital until they are actually in the procedure. This makes it extremely difficult to plan for or prepare ourselves emotionally.
So many thoughts and worries are swirling through my head, causing new cracks and breaks in my still healing emotionality. Things could go wrong. He will under go anesthetics at such a young age, which is always dangerous. His voice box or vocal chords could be harmed. The procedure might not work. He could end up back in the hospital for up to a month or more, now even further away. How will the three other boys deal with this? Who will care for the other boys while we are at the hospital? How will we all deal with this emotionally, physically, financially?
I’m starting to feel like I might shatter into a million pieces if one more thing happens. I still feel a little numb from all the information. I’m worried what is going to happen when this numbness finally wears off. I’m just praying that his GI consult comes back clean in a week, I’m not sure I can handle anything else or I might just burst into a million shards.