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October 17, 2016

Where To Go From Here?



David and I have come to a few crossroads with Aiden's care, and we have some big decisions to make concerning him and his future. And right now, I have no idea what to do.

Now that Aiden is back to his normal self, the hospital has been pushing us towards a long term care facility. But David and I have a lot of reservations about going there. The doctors at Primary's boasts to us that "we will love this place!" They claim this facility treats babies as if they are normal babies. They have a routine, get them up and dressed, play with them, take them on walks... Considering that no matter what I do or say some nurses leave Aiden in bed all day with no interactions now, this seems like a magical place to go to. Until David and I started reaching out to other families that have had to take their babies to this care facility, and then the stories turn out to be very different.

Not a single family has had a positive thing to say about the nursing there. We have heard nothing but negative experiences. One family had to be sent back to the hospital because a nurse gave her baby another child's set of medicines for the entire day and got sick. I've heard about babies sitting in poopy diapers for hours, causing their child to get rashes so bad they bleed. Multiple parents have expressed that they claim to get babies out of bed, but because it's one nurse to four children, their babies are really left in their cribs and ignored all day. One family finally had to take a leave of absence at their jobs, leave their other children at family member's homes, and stay there day and night just to ensure their baby was taken care of. The general consensus from parents is that this place is very old, scary, and their babies are neglected.

I don't know about you, but I'm going to take a parent's word over a doctor's.

Whether these parents are exaggerating or not, this long term care facility poses another huge problem for our family. It. is. so. far. away. By the time we were to drive the girls to a babysitter, and then make the trek up there, it would nearly be a two hour drive one way. We are already drowning from spending money on gas to make the hour drive to see him daily. Not to mention the alarming amount of miles we are racking up on our cars. And with Melodie being in school, we need to keep some sort of routine at home to ensure she (and Lydia) thrives as well. By the time we were to get up to Aiden in the afternoon, we would almost have to turn around again to get the girls to bed. I've played out a million different scenarios in my mind as to how we can make that work - but I just can't think of a way to do it. Unless David were to take a leave of absence from work. But we have piles of bills coming in and financially that isn't even close to an option either.

If babies are truly neglected to the point that these five families have expressed to me, then what is going to happen to Aiden if we can't be there for him? We would barely see him during the week. And can you guys imagine having to send your baby off to a facility that's so far away, you would only get to see them on the weekends? The mere thought of going to this facility has been keeping me up at night. I have consistent nightmares about it. It's been giving me anxiety. I am so stressed out because I don't know what to do.



The only way we can avoid this facility is if the hospital does trials for the home vent at the hospital. This has proven to be another battle in of itself.

Neonatologists, RT's, NP's, and nurses have expressed to us that they think he's ready to do a home vent trial. David and I feel like he is too. And really, what harm could be done? He's big and stable enough that if he can't do it, then all we need to do is quickly switch him back to his other vent, and give him a few minutes to calm down. There is only one person in the entire NICU that is holding us back from that. And honestly, I don't get this person. We find this RT very frustrating. They claim she is the guru of all vents, and whatever she says around that place goes.

During the time he was sick and in so much distress, we had to put him back on the ventilator that is a step down from the Aveda he was on. We discovered that being so sick was causing him to breath rapidly. His rapid, heavy breathing was causing the vent to not sync with him, and he was air trapping. So as he was in the middle of exhaling, the vent would force him to inhale, and he was never fully releasing all the air from his lungs. As I'm sure you can imagine, this panicking breathing forced him to hyperventilate.

Unfortunately the Aveda vent is a fairly basic machine without many options for mode of ventilation. So to help him out, they put him back on the step down of vents until he recovered. Although this other vent is technically used for smaller babies in need of more support, it's also a newer machine with more options and modes. They were able to put him on a mode that allows him to control his I-time - which means he dictates every breath he takes, and the ventilator only supports him by expanding his lungs big enough to sustain himself. The vent doesn't force any additional breaths in between his own. They assured us we shouldn't consider this as a step down. In a way he was almost on less support because he's strong enough to initiate breaths on his own. This was just a way to ensure the vent didn't force him to air trap while he recovered from being sick, and then we would go back.

So since Aiden is recovered and stable again, the time has come to switch his vents back. We had a care conference around that theme to come up with a plan, and brainstorm a mode on the Aveda vent that resembled the one he's on on the step down vent so he can have that control. We were also planning on discussing home vent trials as well - until the Queen RT walked in the room.

She scoffed at the idea of doing home vent trials, claiming he was still on way too much support and not even close to doing them. The reason David and I have such a hard time following what she is saying is because of all the other people at that NICU saying otherwise. Why would countless other RT's, nurses, NP's, and Doctors express that we should try it? I guarantee this lady isn't the only self proclaimed "vent expert" around the NICU, and I certainly don't see why everyone allows her to say she is either.

I also don't believe she is the "expert" because of the 15+ families I have now spoken to about home vents. I've talked to countless individuals whose children came home on much higher settings than Aiden. Some of these families have children with SEDc as well, and a couple of them have toddlers with SEDc that are on the settings and number ranges as Aiden today. And they are twice his age, and came home at his age on twice the support!

I talked to one specific family whose child was also at the NICU at Primary's for nine months. He was also trached and vent dependent, and for months this "expert" RT claimed this child was nowhere near home vent trials either. So they shipped this baby off to the long term care facility. The moment this baby arrived, the RT's there literally laughed at the the "expert's" claim to him not being ready, and immediately started home vent trials. That baby was home in two months, and he came home on the exact vent settings and number ranges that Aiden is on now. Another mom had the same experience, and her child is on significant less support than Aiden now. RT's couldn't believe the "expert" said she wasn't ready either, and she's in the middle of home trials right now.

I feel so frustrated. How can you be the expert when clearly it can be done? How can one person waltz around the NICU with that much say and pull over the countless other medical individuals that have said otherwise? How can I possibly begin to trust her opinion when I've heard parents say other RT's have literally laughed out loud at her idea that the baby isn't ready?

David and I feel so frustrated and defeated. Our many neonatologists agree that it's time for him to come home. They want him out of there before he falls further behind developmentally. Not to mention him being at the hospital is just tempting fate for him to get sick again. We were lucky this time. I don't want to tempt fate again.

I can't believe that a room full of medical experts were in agreement about home vent trials until this "expert" opened her mouth.

We are putting him back on the Aveda vent tomorrow morning, and have a REAL expert consulting so that we can try to mimic the settings he was on on the other vent. We have to go to this vent before we start home trials anyway. Because the Aveda and home vent have similar settings, we need to find a mode he likes on the Aveda so that we can copy it on the home vent. And we have then insisted and made them agree to try a home vent trial at the hospital before we further discuss going to the long term care facility.

The good thing (if there can be one...) about this long term care facility is that if the "vent expert" gets laughed at by the RT's there for her claims that kids aren't ready, maybe we could get home faster. But we've heard so many horror stories about nurses, I'd almost rather stay at Primary's longer for the nursing care.

I feel so conflicted about what to do.

The "vent expert" agreed to a home vent trial first, but she thinks he's a "long, long, looooong ways away from that". It's going to be a fight to get them to even try it in a few weeks. And if he can't do it there, I'm afraid the long term care facility will be inevitable. But considering all the numbers I've gathered and the stories from other families, I feel like this "expert" isn't even willing to try, and is just trying to push us out the door.

In a perfect world and perfect situation, David and I will be able to push them to hook him up to the home vent in a few weeks. And Aiden will do so well, that we can continue doing home vent trials at Primary's, and get him home straight from there. But if there is anything I've learned from this experience, it's that nothing goes your way and we will probably end up at the long term care facility that's two hours away and I'll never get to see my baby.

Feeling frustrated, unheard, stressed, and anxious doesn't even begin to express how I'm feeling right now. I want my baby home, and I'm tired of being given the run-around and being treated like I'm stupid at the hospital. If 15+ families have children come home on much higher settings, don't treat me like I don't know anything. The majority rules, lady. Aiden is 7 months old now - 7 months old - and he hasn't stepped a foot inside his own home yet. For 7 months I have only gotten to be with, hold, and take care of my baby for a few hours a day, a couple days a week. It's torture. I'm tired of it. I don't want to deal with any more doctors, or "vent experts", or nurses that keep my baby laying in bed all day. I'm done. I don't know how I can do this much longer. I just want him home. And believe me, he wants to be home too.



October 11, 2016

My Boy Is Back



It has taken quite a bit of time, but my little monster man is finally back to me. Fully, and completely.

I don't know if I adequately described how scary this bought of sickness was, or the miracles we have once again received. Even my mind has a hard time wrapping around it. His medical team told us he was more sick than when he was first born during that week. And medically speaking, when you look at all the numbers, he shouldn't have survived it. And if he did survive it, he certainly shouldn't have come back completely as himself.

I remember them telling us to be prepared for brain damage of some kind. Explained to us that an infection that bad could have affected any number of areas of his brain. They did his MRI expecting to tell us what areas were affected and what that could mean for him. When his MRI came back normal - they were flabbergasted. NP's and Neonatologists still come by and tell us they can't believe it. Medically and logically thinking, that shouldn't have happened.

I saw in the news the other day a story about a 5 year old girl that contracted an infection very similar to Aiden, and passed away from it. When I saw that story, it hit me pretty hard. I felt a deep sorrow for her family, knowing a large glimpse of what they went through and the terror they experienced. It broke my heart, and further drove home the unwavering stream of miracles and blessings we've been receiving. It's a very humbling place to be in.

We were so lucky Aiden was already in the hospital when it happened. His amazing nurses that acted quickly to help him is a large part as to why he came out of this. If something like this happened at home, I'd be posting a very different blog post right now. But on the flip side to that, the biggest reason this happened is because he is in the hospital. It's very much a double-edged sword you don't want to be close to. And I'm so tired of being close to it.

I'm so done with the NICU, done driving there and back each day, done seeing my baby for only a few hours. And he's done with it too. It's time for him to come home. I just know in my heart that if he were here, he would be doing so much better. Not that he isn't well taken care of there - but he wants and needs his family. And we need him. Nearly 7 months in the NICU is way too long. I'd give anything to have my baby with me all the time. Anything. And I've reached a breaking point of not having him with me. He has started to get upset each day as we leave. He'll even reach his arms out to me and start to cry as I put him back in bed and say goodbye. To make him experience that isn't fair. And I don't know how much longer I can handle that each day myself.

We have another care conference later this week to hash out a respiratory plan to get him on the home vent. And I'm nervous for that. I'm realistic enough to realize we have a ways to go still. But there are a lot of uncertainties and things the hospital is trying to push on us that David and I don't want to happen. It's going to be a doozy of a care conference. I know we've received many miracles already, but we are going to need our biggest miracle yet to get out of the hospital.