One of the other issues we've been battling with Aiden's medical team is his c-collar. I loathe his c-collar. I despise his c-collar. I want to burn his c-collar. I want to throw his c-collar out the window. I want to run over his c-collar with my car. I want to force his doctors to wear a c-collar for a day, and see how they like it! I can't wait until we can say "buh-bye, now!" to his c-collar for good.
I get it - one wrong move, and Aiden could be paralyzed forever. It's a real threat, and not something I want to risk happening to him. I would much rather be safe than sorry. But even then, I. Hate. His. C-collar.
And here's why:
1. Many nurses don't even know what a c-collar is, and hardly any of them want to put it on. And it's a huge hassle. It takes two pairs of hands to do it. You have to have one person unhook his trach, while the other person places the front part of his collar in-place on his chest, and then quickly plug the trach back in through the provided hole in the collar. And then one person must put their hand behind Aiden's back, slightly lift back his head, while the other person slides the front piece into place. Once the front piece is on, one person must lift him up, so that the other person can put the back piece of his collar underneath him, and then slowly lower him back into bed as you slide the collar in place. All the while making sure you aren't pinching his jowls or catching his ears. That's quite a process that can't be done any other way for fear of his own safety. And because of this, many nurses would rather not bother with it. Although he has a daily routine clearly outlined in his chart, they take one look at the collar, another look at him, and put the collar back under his bed.
Except for a handful of our primary nurses that have gotten used to putting it on, I walk in on an almost daily basis only to hear, "Well, I don't know how to do the c-collar, so I just waited for you to get here to put it on...". I can't tell you how much this agitates me. This is a nurse, in a hospital, full of resources and people that do know how to handle a c-collar. And rather than reaching out to those resources, they'd much rather not bother with him. And as a result, he lays in bed all day long until I get there and get him out myself.
So he is missing out on opportunities to be held, played with, and treated like a normal baby because everyone is afraid to put on his c-collar. That is not fair, and he shouldn't be deprived or treated differently then any other baby in the NICU because a nurse simply doesn't want to bother with it.
And, 2. He hates his c-collar too. He can only tolerate it for a max of four hours at a time before he starts to get fussy. It makes him sore, tired, and sweaty, and he gets very uncomfortable in it. I mean, can you imagine having a hard piece of plastic around your neck, half-way up the back of your head, and half-way down your back? I'm surprised he lasts as long as he does.
It limits his range of motion, and this frustrates him. It doesn't allow him to move his arms so that he can rub his eyes, or try to grab a toy. It doesn't allow him to move his head as much as he would like to. And it forces his body to stay in a rigid, stiff state so he can't freely wiggle his body around. When he is awake with it on, he will begin trying to do these things, but you can see the frustration in his face. He inevitably gives up after a few minutes, withdraws himself from his surroundings, and goes to sleep. And that kills me inside. A four and a half month old baby should not be withdrawing from trying out normal developmental things because he's forced to have a hard plastic neck brace strapped around him.
The hospital has been talking to us about transferring to a long-term care facility in the near future. A few months ago they had talked about wanting to get an MRI of his spine done to get a clearer picture of his ossification. This fell off the radar, but David and I brought it up again as this long-term care facility came up. We expressed that we would prefer to get it done while we are still at the hospital, rather than dealing with transferring back down to the hospital to do it later.
Right as we expressed this, he started getting jittery eyes and legs. This can also be a normal side effect of his sedation medicine, but his medical team panicked and thought they did something to damage his spine. They consulted neurosurgery for it, and in turn neurosurgery wrote an order that he needed to wear his c-collar 24/7, and rushed to get him into an MRI to check things out the next day.
The MRI results came back to show exactly what we all expected. His spine is short, compact, and tighter than an average person. Thus his diagnosis of SEDc, respectively. The MRI further showed there wasn't any damage done to his spine, and it even looked ever-so-slightly more ossified than his previous spinal xrays. His vertebrae is also aligned straight, which is great news as individuals with this type of dwarfism are prone to having severe scoliosis.
Further more, since his MRI revealed no damage, they concluded his jittery eyes and legs to indeed be a side affect of his medicine.
You would think all of this led to the neurosurgeon removing the order to wear his c-collar 24/7 - but it didn't. The order supposedly remained there.
David and I were very concerned about this. If there wasn't any damage to his spine, why would we force Aiden to be in his collar all the time? This was only going to cause a whole other set of issues for him - he could get break down and pressure sores, it would further flatten his already flat and funky head, it would be harder to notice when it was getting too small for him... And all of our primary nurses agreed with us - this was not a good thing for him and was unnecessary.
We finally took up our concerns with the director of the NICU, who in turn simply told us, "I think this is a good thing for him. It would force nurses to do more activities with him if it's already on." But that didn't sit right with me either. That is a nurses job. I wasn't about to torture my son with a neck brace 24/7 just to force a nurse to do the job they are there for.
As David and I played the political game concerning all this over a period of a few days, we noticed a very fast change in Aiden. He was starting to withdraw into a shell from being in that collar. He was distant, refused to engage with you, wouldn't interact or smile, and would avoid any contact you tried to establish. And he was very uncomfortable - to the point nurses had to give him PRN's around the clock just to keep him happy and under control.
So David went to the NICU director again, and this time they got into quite a heated argument about it. After laying out our concerns and subtly pointing out that we weren't going to allow them to force our son into a shell for their own liability concerns (because really, that is what this situation boils down to), the director agreed to set up a meeting with neurosurgery to discuss a better plan for his c-collar. The neurologist was going to be out of town for a few more days, and the director refused to talk to anyone but the doctor that originally made that order. She did allow his collar to come off at night when he was sleeping, but wouldn't make any other changes until that specific neurosurgeon came back from vacation.
In the meantime I was not happy or satisfied. So each day I walked in to his room, said to his nurse that day, "Look, I don't want you to get in trouble. I will tell the doctors I mandated this, and you are more than welcome to throw me under the bus as well. But I am going to kindly tell you to help me take off his collar right now." And the funny thing is, not a single nurse argued with me further. One of our primary nurses even "washed his collar" very thoroughly multiple times just to give off the appearance we were doing routine maintenance to it, and ultimately give him an even longer break from wearing it. For the few days I did this he didn't get out of bed once - but in the bigger scope of things, I knew at that moment mandating a break from his collar is what he needed most.
When the day finally came that our neurosurgeon was back in town, David went to the hospital geared-up and ready for another argument. We were both hell-bent on not letting them order Aiden is to wear his collar 24/7. Even if they made us sign paperwork stating we wouldn't sue in the event someone paralyzes him, we were prepared to do so. Whatever needed to be done to ensure his mental and emotional well-being was taken care of as well.
As David finally met up with our neurologist, he was immediately taken back when the doctor said, "I didn't mean for his collar to be worn 24/7 here on out, I only meant for the day he was going to MRI so that he was ready to be transported at any time. And especially because he was jittery, I wanted to rule out any damage to his spine that may have caused that. So just as before, he only needs to wear his c-collar as he's being transported or when he's out of bed." David simply said to him, "Sounds great, thank you. Would you not mind going in to the NICU director right now and let her know that?" Our doctor happily did so, and the NICU director didn't say another word to us about the collar after that.
This is yet another example of the inconsistencies we are continually dealing with. And I'm so fed up with it all. Where did the misunderstanding lie? Was this all just a big liability issue for this new, young NICU director that just started, in spite of what our neurosurgeon said? Our neurosurgeon was acting as if he didn't understand why he needed to come talk to us. Like this was always the plan and what he said from the beginning. And yet, David and I battled multiple people in the NICU about it for an entire week. And in the meantime, Aiden had to once again suffer through something he didn't need to.
It's so hard to be put into a position where you have to constantly question and argue against decisions being made for your son. There have been so many times I've wanted to march in there, guns blazing (figuratively, of course) and tongues flying. But if I only appear as an emotional, irate mother - how far would that get me? David and I have to be so careful in the way we handle things. We have to play the politics game, appeal to the right people, be careful in our wording so they take us seriously. When your child's life is literally in their hands as you do so, it takes every once of patience and strength in me to play the game. And nothing makes me more upset when a NICU director flat out says to us, "Well don't forget, we are the medical professionals..." as we question a decision they made for him.
Could I fast forward time until when he finally gets to be home with me?