November 13, 2016

Major Disappointments

I know it's been awhile since our last update. A lot has been happening each day. And as I would begin to write an update, something else would happen that would cause me to start writing the update all over again. But I'm currently sitting at a birthday party for one of Melodie's classmates, and after trying to engage in conversation with the other moms that are obviously more interested in Pinterest, it's become clear to me that I have some time to dedicate to an update. (Side note, that drives me crazy. What happened to moms talking and getting to know each other at birthday parties?!)

Since our last care conference, David and I have been feeling very disheartened. And very frustrated. And frankly, pretty ticked off. At this point, what were we going to do? The feeling of desperation and helplessness plagued my thoughts and sleep constantly.

After praying, I felt inspired to consult the wisdom of the other parents with SEDc children. They directed us to the doctors at the skeletal dysplasia clinic at duPont Hospital in Delaware. I was aware of this clinic and experts before now, and have even asked our medical team to consult with them many times before on various issues. Unfortunately they have never done so themselves. So we determined we would have to do it ourselves. We weren't sure if the doctors would consult, but thought that the threat of us seeking a second opinion might at least put a fire under their bellies again.

After leaving several tearful voicemails with anyone whose name was attached to the skeletal dysplasia clinic, I anxiously kept my phone next to me at all times. The minute my phone rang, I'd jump to see the caller, only to feel a slight disappointment when the caller ID wasn't a Delaware number.

In the meantime we told our medical team that we reached out to the experts and to hopefully expect to hear from them. At this time, we happened to have a neonatologist assigned to us that had never had Aiden before. He's not new to the NICU by any means, but by chance was never put over Aiden during his rotation. Once this doctor found out we contacted duPont Hospital, he replied with a, "Oh, I know the head neonatologist at duPont as well. I'll email him myself."

David and I talked in awe over that coincidence. And really, can we count that simply as a coincidence? What are the chances that we happened to have this neonatologist for the first time, at the exact same moment we contacted duPont, that happened to know the head of the NICU over there personally? I'm continually overwhelmed by the ways we see Heavenly Father's hands in our situation. I know that He watches over us and ensures we have the resources we need to help Aiden.

After a very long week, duPont called back. Not only were they thrilled to learn another child with SEDc was born, but they were also anxious to help us as well. They contacted PCH, and we signed paperwork to release all of Aiden's medical records to them to look over. It took PCH another week to gather all of his info and send it out. But honestly, we don't blame them for taking that long. Last I counted, Aiden was up to 56 xrays alone - and I last counted back in July.

After we sent his charts off to Delaware, his medical team here decided to hook him up to the home vent and see what he did. (Putting a fire under their belly sure did work, ha!) David and I rearranged our schedules to be there for him when it happened. When they brought the vent into the room, I began to shake from nerves. I didn't know what to expect, but I stood next to him and held his hand. When they switched him over, he didn't even seem to notice. They kept him on for 15 minutes, and the entire time he chatted away with me, happy as can be.

He was able to do two more days of the home vent and got up to 30 minutes on it. But on that fourth day, he didn't even last a minute. The next day, same thing - couldn't do it at all. Every day since then, he hasn't been able to handle the home vent for more than five minutes. Every day his medical team has played around with the settings, trying different number ranges to see what might work - but nothing has worked.

At these moments, I've felt more defeated then at any other point with his journey thus far. And the biggest frustration lies from the fact that it's not him, it's the medical team. Everyone in the NICU agrees that we know he can do it, we just can't figure out the settings he needs to help him be successful. Everyone, even up to the director of the NICU, has expressed to us that they are "no expert" on the vent, and doesn't understand the machine well enough to help him.

I finally turned to the NP one day and said, "Do you even realize how incredibly frustrating and maddening it is to hear that no one in the hospital is trained on this vent? How much it ticks me off that a single person here isn't trained well and that you are incapable of providing the resources needed to help my son?" But all she could do was nod her head and say, "I know, and I'm so sorry."

David and I felt so desperate, we actually spent an evening looking at homes for sale in Delaware. We thought that maybe moving our family to the experts would finally do something beneficial for Aiden. But Delaware answered back, and mentioned that children with SEDc need to go home on either an LTV vent, or on a different mode on the Trilogy vent.

PCH doesn't have a single LTV vent available. So David and I spent an entire day tracking down an LTV vent at Home Care ourselves, only to find out the pulmonologist refuses to allow him be on it even though the skeletal dysplasia pulmonologist suggested it. Apparently the two of them have conflicting ideas about this vent. The expert claims it can be beneficial for our son's bell-shaped rib cage, while the doc here claims it's harsher on lungs. Whatever.

So after a whole day of phone calls and emotions wasted on our part finding this vent and ultimately doing PCH's job for them, we turned to the next suggestion, which is the different mode on the Trilogy vent. But the minute we brought up this mode, it was immediately shut down by everyone in the room. Apparently, and again, no one in that hospital is trained well enough on the Trilogy vent to try and play around with that mode, and refuses to even try.

David and I once again turned to the incredible families we have gotten to know so well, only to find a clear consensus - all the kiddos with SEDc that are on the Trilogy home vent are on this different mode of ventilation. Curious, and a quick Google search later, David and I found the Trilogy handbook online and looked up this mode. It's literally the exact same mode of ventilation Aiden is on now on the hospital vent, just a different name. Exact. same. mode. Are you beginning to feel the asinine frustrations we are feeling yet?

(Also, we've been doing this way too long if we can open a handbook for a piece of medical equipment willy-nilly, and understand every word of it.)

Out of sheer desperation again, we've brought these things up with his medical team, trying anything to get them to change their minds. But because no one is trained well enough, the pulmonologist doesn't think it's safe to try it for him. Even though Aiden's doing it - right now, as you read this. And we get the safety issue. But that's not the problem here. The problem is the obvious lack of training in the hospital concerning the Trilogy vent. And quite frankly, it's unacceptable to deny a child something he needs just because you are unable to adequately train your staff.

Unfortunately, we know that we just aren't going to win this one. There isn't much to fight about when people flat out don't know what they are doing. And this has left us thinking we now have no choice but to transfer Aiden to the dreaded long term care facility. Clearly we are at the point that sitting around at PCH is a waste of time. And ironically enough, South Davis has a fully capable RT staff that is well versed in the mode that Aiden needs. And if it turns out he needs an LTV vent instead, South Davis is more than willing to call Home Care about the LTV vent we found.

I'm terrified to be even thinking about this place seriously. I don't know how we are going to do it. But ultimately if they have the resources to get Aiden home, then we will do what he needs and figure it out. David keeps assuring me we've figured it out this far, so we can figure this out too.

We have a meeting with the head doctor and RT at South Davis this upcoming Thursday. We plan on very honestly telling them all the things we've heard that causes us to be nervous, and lay out our expectations for Aiden's care. I guess we'll see how it goes, as we have no other options left. 


  1. I'm so sorry about the setbacks and frustrations. I truly believe everything happens for a reason. Whether it be turning you guys into home vent experts for the time aiden comes home, or one day, you are going to guide another family who is in this situation, just remember there is a reason. Your son will be home one day. Just one day at a time. If I could put those doctors and nurses through some quick training, I would. I'm sure we all would... I hope you know how inspiring your story is, even through the setbacks.

  2. I will be fasting for you Thursday. Prayers it goes well.
    Love you!