Our NICU room had been so inviting and cozy. The walls were a warm color and there was artwork and furniture to make you feel comfortable. We had developed these wonderful relationships and they all let us do everything we felt comfortable doing, without hovering over us. While we never left him during the day, we felt comfortable leaving him at night after he fell asleep, knowing they were there and would call us immediately if anything happened. It was a warm, safe bubble that we had all built together and I definitely took it for granted.
The TICU was none of those things, at least in my mind at the time. When you walked in the room, you immediately knew you were in a hospital room. I think the walls did have color, purple I think, but It was very stark. It was a bigger room and had an echo. I don’t remember there being a couch and the bigger recliner chair was on the other side of the room. And if I remember correctly, we used a smaller portable chair to be able to sit by his bedside. No one seemed excited to have us there. Sure, they thought Teddy was cute, but it seemed they had never had another EA child before and they were definitely not familiar with all it required.
You see, the TICU is meant to be a transitional, short-term unit. They are not set up to house the long-term patients. They are simply there to help transition a PICU/NICU child to the floor. So, when they are stable enough to not need the intensive care an ICU provides, but still need an extra few days to get strong enough to be able to be transferred to the floor, they go to the TICU. So, when we rolled in with our kiddo that would never be able to go to the floor (at least at our hospital where they would not be equipped to handle it) and wasn’t able to go back to the NICU since we had been home and not sick enough to go to the PICU, everyone was just confused. The doctors also seemed confused about exactly how to handle us, because they were not used to trying to manage a long-term patient, especially with a rare condition they had never seen.
There just seemed to be this overall feeling of annoyance and I certainly was not helping matters with aggravation over it all. The trust we had built with our NICU nurses was gone and we were having to restart with this whole new set of nurses that were not used to parents wanting to do it all. They didn’t seem to think we were capable (I know they were just doing their jobs), but we had literally just been home because everyone knew we were capable of taking care of him. Also, the doctors and nurses were less personable. They didn’t seem to really want to talk to us and get to know us or the situation at hand. We didn’t feel comfortable leaving him at night, so we started spending the night in the horribly uncomfortable chair.
And then there was the obnoxious and non-stop beeping. I am not talking about the normal alarms that the monitors would have if something went above or below an acceptable range, I am talking about a loud beep that was mimicking Teddy’s heartbeat. Imagine hearing every single beat of your heart as a loud screeching beep, yep, it was driving me mad. For whatever reason (even the NICU nurses didn’t know why), the TICU had a policy that the heart rate sounds would be on every monitor. It is the ONLY place we have been (and we have been in them all), that required that to be on 24/7. I begged they turn it off or even down, but they refused because they claimed the nurses out at the desk needed to be able to hear it if it changed (which was not true, because with the door shut you couldn’t hear it and they had monitors at the desk showing them exactly what was happening). They only ever came in when an alarm went off, not if the beeping got faster or slower. I tried going to the charge nurse and she refused. I lowered the sound one day on the monitor and of course got in trouble, even the charge nurse came in to scold me about it. Well, I had to try!
It was truly driving me crazy and I became more and more desperate to get to Boston. The issue was that our insurance didn’t want to approve the transfer. Since we were back in the hospital and they had already said they would not release us again, since we had two failed attempts, the only way we could transfer was by a medical flight. While the insurance did concede that transferring to a more equipped hospital was better than paying for Teddy to stay in the hospital for a year, there were other hospitals closer that could potentially do a repair sooner that were only a few hours ambulance ride away. We were set on Boston, because Boston was the best and we desperately wanted Dr. Jennings. The TICU doctor, who was desperate to get rid of us as well (she was lovely, just not wanting us long-term), tried to convince them, but since she wasn’t familiar with EA she didn’t really know what to say. Thankfully after being bombarded with calls from Boston, the TICU, the NICU, and us, they finally relented and said we could transfer. Thankfully that amazingly strong mother I have mentioned in the past had already done the leg work for the Medicaid side of things and had managed to get all of Boston in the Kentucky Medicaid system, so they would cover it as secondary insurance! I told you she was an amazing person and a huge part of getting Teddy to Boston.
So by the grace of all things, we were set to transfer to Boston only a week after Teddy had been readmitted to the hospital. We had no idea how long we would be there, but they told us to prepare for 3 months (at the longest). So we took turns going home and trying to pack up our lives to move to Boston. It was crazy and stressful, but also exciting, because we knew Boston was where Teddy needed to be. In the chaos of preparations, we did take the time out to celebrate Teddy’s first Halloween. Jason is a bit of a Trekkie, so my sister bought Teddy a Star Trek costume from Build-a-Bear, since he was so tiny. It fit him perfectly and he was absolutely adorable. Teddy was so strong and we were ready to take the next big step.
On November 3rd it was finally time for us to head to Boston. We were nervous, but very excited.
