survivingmyboyz

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

Archive for the month “July, 2014”

Struggling to breathe

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.

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.

Running from the mind

Busy, busy, busy, I have to keep my mind busy. That’s not hard with four kids and a poor night’s sleep. All day long I go, go, go, because if I stop, for even a moment, I know I might not be able to start back up again. I’ve played this game before and I know I can’t win, but before there were a lot more moments of quiet that I was forced to face, time to try to process and heal a little. Right now there is no healing though, just moving. We are stuck in limbo for a little bit. It is best to just not think when in limbo or I am likely to overthink and that is never good. I can’t move forever though and those moments happen, when things slow down, the world blurs away, and the only thing in focus is the face of my baby. He smiles at me and my eyes well up. His laughs are met by wet salty drops that escape my eyes. These moments come without warning; out of no where. All I can do is suck back the tears and breath through them. The worst is the night. I try to go until I can’t go anymore and then I collapse into bed. If I’m lucky sleep comes quickly, but it never stays. I awake into darkness, tears streaming from my eyes. No dream has brought this on, just life, reality that hits me when I’m not busy protecting myself from it. I awake in the morning exhausted after hours of battling with my thoughts, attempting to dull and subdue them with mind-numbing activities in the middle of the night. It doesn’t matter though because I must get up and continue to move or the thoughts will catch me again. I have to keep going for another week or two, until we can exit limbo and enter recovery. I just pray it isn’t a long one.

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.

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