Warning *Guest blogger* Ed DeVoe. I know you all enjoy reading Rosa’s blog posts, but she needs a break every once in a while. So I’m gonna do my best to fill you in on what is happening with Aimee. (Editor notes: Ed is a great communicator and this post made me cry.-Rosa)
Yesterday, due to Aimee’s continued hypothermia, we did another urine sample that this time turned up positive for a urinary track infection. We have started her on an antibiotic to treat it. Her temperature has still been below normal requiring the use of the Bear Hugger, which is an air inflated heated blanket. She used this almost all night in order to keep her temp around 96 degrees.
We finally got training on our new Astral BiPAP/ vent. It is quite a bit fancier than our old BiPAP, but one of its biggest features is that it has a battery back up allowing us to bring it along with us no matter where we go with Aimee. This is exciting and also a little nerve-racking thinking about all of the extra equipment and care that Aimee will need away from home. It reminds me a little bit of when we switched from having Aimee fed through the G where we could do intermittent bolus feeds and then switching to the J where she was fed continuously. Things just seem to progressively get more and more complicated as we care for Aimee. Along with the training, they also brought the bag and other parts and pieces to allow us to go mobile with it. One sidenote that was discussed is that we can’t leave the room with Aimee on BiPAP due to Covid restrictions. So somehow we will need to leave the hospital at the exact moment when she is awake and not needing the additional support.
Yesterday we also met with neurology, palliative care, MCC and got a new attending for Aimee’s medical team. Although it is great to have all of these teams watching over Aimee and doing their part in her care, it is a little crazy to think about all of the facets that are involved and how one affects the other. When we see these clinics outpatient we may get one or two in a single day and we know leading up to the appointment who are going to be talking to and when, but at the hospital any one of these teams could walk in at any given moment. They almost seem to stack on top of each other and, at times, will show up at the same time as someone else is already in the room. Their intentions are good and they want to help Aimee with her care, but at times it’s like a rapidfire question and answer with each one of these teams. It gets pretty overwhelming and draining. I always feel so inadequate during these times, because I know that Rosa has a much better grasp on Aimee’s care and history. Yet I also know how draining it is for Rosa to be in the room not knowing when someone might come in to discuss Aimee’s care. You almost have to sit at the ready knowing that it any moment someone could walk in from basically 6am to 6pm and that doesn’t include respiratory therapists and nurses that come in 24/7. I am grateful that Rosa is willing to let me give her a break here at the hospital and I think it’s good for the kids to have Rosa at home and not just have me full time.
None of the teams that we met with yesterday really had any concrete direction or guidance for us. Aimee has left a lot of them scratching their heads trying to figure out what her new baseline is going to be. We are hopeful that the UTI treatment will eliminate these hypothermia issues that have been cropping up, but continue to try to figure out the added sleepiness and increased respiratory requirements. Yesterday, Aimee was off of BiPAP for six hours which seems to be on the better end of her time awake and off BiPAP.
A few weeks ago when we were meeting with the head pulmonologist, he acknowledged that Rosa would be a good candidate to work with a team that is looking at how much of the day is spent caring for medically complex kids during day-to-day life at home. What they are trying to quantify is how much time is being asked of the parents every time a doctor adds a new sequence or prescription to her care. If they really give the doctors some data they will be better able to acknowledge what they are asking the parents to do for these kids. I didn’t think too much of it at the time because we’ve just slowly added more and more care for Aimee over the years. After thinking about it and being at home with only the other four kids, I’ve started to realize how much time it truly takes to care for Aimee. Not that caring for four kids at home by yourself is an easy task, but I feel almost a bit of freedom to be more flexible and do things that we just can’t while caring for Aimee. I’m not upset by the amount of care that Aimee needs. I feel honored and privileged to be her dad and care for her the best that we can, but I just didn’t realize how much of what we do on a day-to-day basis is scheduled around Aimee’s care and needs. Because this care has just been added slowly over time, almost like a frog in a tea kettle with the temperature slowly being turned up, you just don’t even realize how hot it’s getting and all that it takes to care for her.
