survivingmyboyz

tales from a stay-at-home mom of four boys

Hotel California revisited

I’ve done the math (which admittedly I’m not good at), but it appears that I have spent approximately 49% of the days this year so far in hospitals. If I were to add in days spent going for blood tests, doctors appointments, and clinical consults, I’m pretty sure it would be closer to 60%. I started crunching these numbers today as I lay in a pull out couch hospital bed trying to take a rare moment of rest while listening to my baby labor to breath in the crib next to me. That’s right, we are back in the hospital.

I’m going to give this disclaimer early on in holes it won’t deter people from reading. I am very tired, no exhausted. I’m not sure how I am finding the energy to write this right now, but I just felt like I need to. That being said, I will not be editing and spell checking what I am writing, not right now anyways, so hope this makes sense and isn’t too horribly written. If it is and you have complaints, I suggest you go several nights with only almost no sleep, then spent a few days dealing with a crying baby and attempting to process information multiple doctors are telling you, the. Go and try and write a beautifully edited blog that expresses how you are dealing with all of it. That was the nice suggestion, I could’ve suggested something a lot less nice. Okay, disclaimer claimed (or whatever you would call it).

If you’ve been following me, then you know that, a little more than a week ago, we were told that my son had scarring just below his larynx and this making it difficult for him to breathe. If you don’t know the story, go read it (shattered by surgery). When we left the ENT appointment that day, the doctor told us that if my son got any worse to take him to the ER at Children’s Hospital in the city. Toward the end of last week, my son seemed to be struggling more to breathe, but it wasn’t horrible, so we just kept an eye on him, knowing that we only had a few more days until the ENT hoped to do the procedure to fix his scar tissue. Then, four days ago, my son went from sucking down his bottles quickly and without problems, to struggling to eat them and pretty much refusing to take them at all. When we were able to get him to take anything from the bottle, it was very little and he seemed unable to breathe properly while trying to drink from them. That night we started tube feeding him early for fear that he wasn’t getting enough food. It was an awful night. He labored to breathe and was so unhappy with the tube. My husband and I barely slept and spent the night trading back and forth who would hold him so we knew if he was breathing or not. By morning we had made up our minds that we couldn’t do his for three more days while waiting for a procedure that technically wasn’t scheduled yet because they were still trying to secure an OR. I showered, packed my life into a bag, and headed to the ER with my littlest guy, knowing that I could possibly be at the hospital for an extended period of him.

That was three days ago. We spent most of the first day in the ER as they ran tests, took X-rays, and I retold littlest guys story over and over. It was dinner time by the time we got admitted to a room and my poor baby was beyond hungry because we weren’t allowed to feed him all afternoon incase they had to operate. It is horrible to watch your child, not only struggle to breathe, but cry from hunger and not be able to help him. He was given oxygen, an IV, breathing treatments, and steroids. The said he had a respiratory virus that was constricting his airway more than it already was from his scarring and this was causing the increased problems breathing. The first night was really rough. He woke up every 20-30 minutes. I could barely function, I was so tired. All the next day, doctor after doctor came in and examined him. We didn’t have a moment of rest. The whole day he was either asleep in my arms or crying. By dinner time, he seemed to take a turn for the worse. His breathing got louder and shallower. He was pale and in pain. He didn’t even have the energy to cry. He just laid there, looking at me with puffy, sad, scared eyes; tears in them, and wheezed at me. I felt so helpless and awful that I was unable to make him feel better. Tears streamed down my face as I tried to comfort him by singing some of the songs I sang to him while he was in the NICU. More doctors, more tests. They said part of it was caused by the fits the steroids were causing him to have. Late that night, he finally fell asleep for a longer amount of time and seemed more comfortable, and I was able to get an full hour of sleep. That night got better as he slowly crept up to almost a full two hours of sleep at one point in time. He was still pretty miserable in the morning, but his breathing was better than it had been in a few days. Despite his suspicion of anyone in a mask and gown, my littlest guy even let a few volunteers hold him today so I could go to the family center and clean his stuffed animal, grab a coffee, and attempt to figure out some of the medical bills from his last hospital stay. Getting out of the room and walking around the hospital, even just for a short amount of time seemed to reenergize me so I focus better on his care (either that, or the triple shot of espresso did the trick).

So tonight, where we stand is still in limbo. Today was better for both him and me. Based on the giant fit he threw around his normal bedtimes, I’d say he was feeling better, otherwise he wouldn’t have had the energy to fight sleep so fiercely. Despite this, the doctors are still back and forth on and concerned about doing the prosecute that they had originally planned for tomorrow. As of right now, they plan to put my littlest guy under general anesthesia and going in through his mouth to get a better look at the scarring. They do not want to do much else because they are worried that he is still inflamed from the virus. Unlike the original plan, the problem will not get fixed tomorrow. Instead, they are just trying to figure out a more definitive game plan. There is worry that he could have trouble recovering and end up intubated and in the ICU afterwards. The other position though is to try to wait out the illness before doing the procedure, but the risk there is that he could labor to breath so much that he exhausts himself and has to be intubated anyway.

It is so hard to decide which is the best course of action, especially when everyone seems to have a different opinion on it. I just want my littlest guy fixed, healed, home, and happy. I’m so scared that we are going to make the wrong decision and damage our little guy even more, or worse, lose him all together. Tomorrow is going to be a very trying day and I’m sure I won’t sleep tonight. I hope I am able to muster the strength my littlest guy needs from me tomorrow and that everything will work out okay. Of course, the procedure tomorrow is just the beginning of the end of all this for us, at least I hope.

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