2 weeks of adjusting

It's been 2 weeks since we arrived in PICU. To say that it's been an adjustment is an understatement. The providers here have talked about how they wish there was a better way to prepare the NICU babies' families for the transition, but there just isn't a way to describe the difficulty. We were told that the vent would be a transition, but everything is different here. The way they manage his medications, the vent, his labs, his schedule, his vitals...everything. A lot of it makes sense once I ask questions, but it's so hard to completely reframe my mind to fit this new plan of care. Antonio has adjusted to the vent mostly, but his blood gasses look much different than before we got here. There isn't much of an explanation as to why. They are worse, but the providers are fine with the numbers. Those numbers would have brought panic in the NICU. Most of the trouble lately has been weaning his sedation drips. He was on morphine, versed, and precedex IV drips. He's now only on the precedex. We've been off versed for probably 5 or 6 days, morphine for 48 hours. The precedex will come off by the end of the weekend, and he will have his PICC line removed by Wednesday of next week hopefully. That will decrease risk for blood stream infections and make it much easier to get him out of bed. Plus just one less piece of plastic weighing him down/touching him all the time. He's been having to wear a plastic cover over the insertion site because of all the vomiting due to withdrawal, which just pokes him constantly. Because he has been on these drips for so long, he basically had to go through withdrawal, there was no avoiding it. They put him on meds through his G tube to try to help, but especially once we got low on the morphine drip he started vomiting, shaking, yawning, hiccupping, and squirming. He gets PRN meds to help, but nothing really fixes all of it. He's just been miserable most of the time. Somehow in between episodes he has found his smile, which has been the only little thing keeping us going.

We didn't expect these weeks to look like this, we thought once he had his trach we would be getting him up to sit in his chair every day and playing on a play mat. Really working on developmental progress. Instead it's been more than 3 weeks of him mostly sleeping and if he's not sleeping he's unhappy unless he's being held a lot of the time. They tell us that this is a normal course for these babies, but it's really hard to watch. The high of seeing his face and getting to move him around without worrying about pulling out his tube left us with so much hope, so this has definitely zapped our energy. It's an odd balance of training and working to get home while watching him not really improve much and in most cases take steps back. The whole reason we moved to this floor was to work towards home, so for there to still be so little forward progress is much harder to face daily than before. They've been trying to take away the medicine that keeps the extra fluid off of him, which hasn't really been successful so he's more swollen again. He's battled constipation as usual. They attempted to move the breath trigger sensitivity closer to what it will feel like on the home vent and they had to undo that today because he wasn't able to tolerate it when he gets upset. We know that there has been some progress, though it's difficult to see. He's almost off of his drips, they switched him to the vent mode that is closest to the home vent today, and he is more stable than he used to be in general. Today he took his pacifier for the first time in a while, which was also good.

Most everyone here has been nice and responsive to our feedback and suggestions. They know that at this point in the game parents generally know their baby pretty well. We did learn that 80% or more of the nurses here have less than 3 years of experience. There is only one "home vent" nurse on day shift and 3 on night shift. We've had the day shift one a few times and one of the night shifters once. They are really the only ones that work on our training check list with us. Most of the nurses are very new and it's hard because there is a lot of inconsistency on how they do things, yet they are supposed to be teaching us how to take care of him. I'm very thankful for my ICU experience because I know how to do most of his care already, although as usual it probably just makes me more annoyed at the differences that are so obvious. During the day we are basically doing 100% of his care at this point, the nurses bring in the medications and milk, but the rest is up to us. We like that because we feel like we're really caring for him, but it also feels like I'm working 16 hour shifts everyday. We know that we will be doing it all at home, but he will be more stable and we will be at home, not working around someone else's schedule in an environment that makes it nearly impossible to mimic home. For instance, in the NICU they were required to get a blood pressure every 6 hours and the rest of his vitals every 4 hours. Here, they want all of it done every TWO hours. That's 24/7. There has been talk of putting him on an antipsychotic medication that they use to treat ICU delirium because most of these babies here get their nights and days mixed up and can become delirious. I asked that his blood pressure and temp only be taken at most every 4 hours on night shift so that he can actually sleep instead of jumping to an antipsychotic. They agreed to do this the past two nights, but for some reason tonight the providers will only agree to skip the midnight and 2am blood pressures. There is no logic behind this, apparently it's because he's on the ICU vent and not the home vent yet, but his blood pressure has literally nothing to do with his vent. And the NICU vent is not a home vent, yet they only needed every 6 hour pressures. There are many things like this that are infuriating and make it feel like we will never get out of here and he will be a mess if we do, but I know there are a lot of babies like him that do make it out okay so I'm trying really hard to trust the process.

We've had lots of NICU staff come up and visit us, which is super kind and brightens our days a bit. Being here for the holidays was rough, but it was nice that Fredy had extra time off to be here during the days with me. We know that we will find people here just like we did on the other floors that we mesh really well with, we've already found a few, but the almost daily introductions to new people after 5 months of daily introductions to new people is very tiring. The nurses staff the west and east units on our floor, we are on the "less sick" side that people call the "easy" side because it's more chronic conditions, not acute. People tend to like working on this side, they look at it as a break from the sicker side, but it also means that we don't get the same nurse two days in a row most of the time. It seems like everyone's "home" is on the east side and they get "floated" to the west side where we are. It's confusing. We're in the "PICU" but our side of the floor is half chronic vent half "hospitalist" patients so like a higher level observation maybe? The problem with all of this is that the unit is not set up for a baby and it seems like this side is an afterthought. These rooms weren't even designed to be used as ICU rooms. They tend to never have the supplies we need on hand, they have to call to get them. Diaper cream, the gauze for his trach, basic things we need every day. They brought in oral swabs with a bottle of mouthwash. Babies are not supposed to have mouthwash. We're supposed to be only creating positive experiences with anything that has to do with his mouth so that he doesn't develop complete oral aversion, and have only ever used breast milk for his oral care. There are kids up to 18 years old on this floor for everything from respiratory illnesses to psychiatric issues. Half of our night nurses have been very audibly ill with these respiratory viruses, one was wearing a mask his first night but decided not to the next two nights and blamed his cough on something "going down the wrong pipe." It does seem like most people are honestly doing the best they can with what they have, but it's frustrating. And apparently they just lowered the incentive pay to pick up shifts during the literal busiest time of the year, so we can expect more staffing shortages.

Next steps are to get him off the last drip, take out his line, make his vent less sensitive to mimic the home vent, and then start trialing the home vent. They guess that will be in a couple weeks, but I'm not getting my hopes up. We're thankful for the people that have tried to make this easier and for the fact that we decided on the trach earlier rather than later so we aren't doing this same process months from now! Now here are some pictures of the reason why we're able to make it through these long days.

"The night Before Christmas"