This week has been rough on Little Hope. Really rough. It started with such potential. We were full of nervous excitement as we watched Hope on Sunday, curious if she would give us a reason she needed to stay in the CICU. Sunday night she gave us the first inkling of what the next few days would be like with an inconsolable cry and sweats, showing early signs of withdrawal as they had begun what is sure to be a long process of weaning her Methadone and Ativan. Monday morning arrived without incident. Let’s be honest though: We do not trust Hope. She has a history of taking a step backwards right when it looks like things are going smoothly. That morning we remained cautiously optimistic that we could actually be on our way home and the only way to get there is through the step-down unit so we were ready to step forward with Hope.
Before a patient can go from the CICU to the floor there must be a sign-out where the Step-Down team comes to the CICU and the CICU team gives a full report of the patient’s history. And I️ do mean a full report. This wasn’t just the last few weeks. I️ fought back tears as I️ listened to each obstacle Hope has overcome to be with us today. She will be my hero for the rest of my life, of that I’m quite sure. As I️ looked around the hallway where the team had assembled I️ saw the face of our attending, Dr. Desena, in whom we have a great deal of trust in both her medical opinion and her overall intuition about Hope. She gave me a reassuring nod and spoke of the confidence the team has that Hope is ready for the next step in her journey…Hope had us all so convinced. With that we said our goodbyes and set our minds forward.
Hope’s transition from this point forward was an unlucky accumulation of road bumps. The first was a computer glitch that didn’t alert her new nurse that she needed a dose of Klonodine, a drug they use to help her through the weaning process. She also began to show us the true impact of the wean from Saturday, which proved too much for her to handle, with an inconsolable screaming, high-pitched, ear-piercing cry, sweats, and diarrhea to name a few of her symptoms. We spent the whole day between advocating for relief for her and trying to console her with few tools to do so. We had three different nurses in the first 12 hours in the new unit, which led to confusion and difficulty getting her complex med schedule met. We were left feeling dread at managing her meds at home: if her schedule is so complex to keep up with, how on earth are we going to manage it!?
The icing on the cake was when her Immunosuppressant med, Tacro – a very time-sensitive med, was 90 minutes overdue. We called the transplant team and we were much relieved to hear they are in the process of simplifying her med schedule for a more home-friendly routine. Speaking of her Tacro, we seriously need some help from our flavor peeps to make this med palatable. She throws it up every day, twice a day so maybe like a nice breastmilk flavor or something – it would be a real Christmas miracle! 😜
I️ wish I️ could say it was smooth sailing from there, but Hope had a rough night and I️ felt overwhelmed at the reluctance to give her a small spot dose (or PRN) to help calm her symptoms. The Step-Down unit’s goal is to successfully wean Hope off the opiates and giving PRNs of more opiates is counter to that goal. It’s challenging as a parent to know the right thing to do for her – do we push for PRNs knowing they only prolong her weaning or go along with the Step Down units preference of letting her cry it out knowing they are trying to help us get her home and to do that we have to wean her? It was somewhat frustrating when the next morning at rounds the Transplant attending made it clear that Hope was no doubt behind on her Methadone and should be given PRNs as needed during these first few days after her wean. Having spent the night challenged with this very thing, I️ nearly broke down in tears, but felt armed with the thought that I️ could at least now get help for Hope when she suffers from withdrawal. My relief was tempered because that morning also saw the return of her atrial tachycardia. An early dose of her rhythm med was a last ditch effort to try to restore her to sinus and keep us in the Step Down unit. By noon it was clear it hadn’t worked and EP had come by to explain they needed to run a different drug via IV drip, which meant we needed to go back to the CICU. Their suspicion is that the diarrhea Hope suffered due to withdrawal was causing inadequate med absorption making her rhythm med ineffective. So back to the CICU we were headed.
Looks like we will not be homeward bound for a little bit and home for Christmas is a near impossibility. However, Hope was incredibly cute as she smiled brightly for all her CICU friends as she returned to the only place she knows as home. She smiled and cooed as her CICU friends came to see her and showed no outward signs of her underlying arrhythmia.
John and I️ tried our best to remain positive and realize that Hope needs what she needs and that means going to the CICU. We set our minds that we can still work on other things that will help us get home while they work on correcting her rhythm. After several hours on the Esmelol drip Hope still hadn’t broken her tachycardia so she was started on pulse steroids to try to calm the underlying inflammation they suspect may be the root cause of the electrical issue. Her new heart was attached at five points with a series of sutures and any point of inflammation near the heart has the potential to create arrhythmia. Think of the natural swelling/inflammation that occurs whenever you see someone get stitches – it’s just that because these stitches are close to her heart they can temporarily mess with her heart’s electrical system. When the inflammation goes down, they suspect the tachycardia will subside as well.
On the bright side here are some pics of Hope doing what she does best – looking cute!
#instahope #heartwarrior #heavensenthope #teamhope #hearttransplant #newheart #transplanted #chd #heart #cincinnatichildrens #cicu #organdonationsaveslives