Though the days have not all been sunshine and rainbows, overall Avelyn is still making progress on the cardiac step-down unit. The biggest incident in the last week was Tuesday and into Wednesday morning. Sean had brought up his concern about Avelyn’s increasing heart rate in rounds Tuesday morning, but the team chose not to investigate at that point. She had just been weaned from Methadone the day before and tachycardia is a potential withdrawal symptom. As I came back into town from working I was concerned but not overly so. Avelyn’s blood pressure was a bit lower than baseline Tuesday and she was having bad diarrhea throughout the day. Things began to cascade to a dangerous level in the early morning hours with persistent diarrhea and fluids also being pulled off via dialysis.
The resident assigned to the unit came in to evaluate around 4am and I point blank and very clearly stated she needed fluid. To me it was clear, her heart rate was up (180’s), her blood pressure dangerously low (50’s/ high 20’s) and her weight had been down the day before. As a kidney failure patient, Avelyn’s kidneys do not react to dehydration properly (aka renin-angiotensin system) and her blood pressure is highly dependent on fluid status. Back to the story, the resident decided it was best to hold off on giving her fluid and to also hold her 4am methadone dose (he thought it may lower her blood pressure further- bollocks). His reasoning was he didn’t know her case and that she is complex so he wanted to wait for the day team to arrive and make the call. I was dumbfounded. Literally.
We’re still settling in on the step-down unit and how things are run, and at that point I didn’t feel like I was going to get anywhere with the resident. I asked the nurse if there was an attending provider available. She said there was “only one for the whole hospital at nights so they stay pretty busy”. I felt lost and was busy trying to comfort a very sick baby whose Methadone was needlessly being held for hours. By the time the nurse practitioner got there around 05:30 the nurse stopped her in the hall before she had put any of her belongings down. She came in immediately and as soon as she walked in I pleasdd with her to give Avelyn a fluid bolus and Methadone. She agreed that Avelyn likely needed such but felt the fellow needed to be called first (I guess next time I need to ask for a fellow specifically :/). The fellow came in and thank goodness knew Avelyn from rotations through the PCICU. He ordered the bolus stat and pushed the methadone immediately. It took a few more hours to get her stabilized and comfortable but she bounced back fairly quickly.
During the turmoil Avelyn’s clonidine patch was removed in an attempt to get her blood pressure up. Once it was off the team figured it was as good of a time as any to start weaning it. So now she’s being weaned from both clonidine and methadone. We don’t know the plan for the clonidine wean, despite Sean and I both asking multiple times. As you can probably tell, the lack of urgency and specifics up on the floor has been difficult for us after having spent so much time in the PCICU. :/
Other than medication weans Avelyn has been working on feedings. We have to get her on a regimen that helps bring her triglyceride levels down and that she can tolerate without chronic intestinal irritation and bleeding. That’s been a major challenge. Right now she is getting a special formula mixed with breastmilk. We’re praying she tolerates the new combination because there really aren’t any other obvious safe options. She’s persistently having tiny flecks of blood in her stool but so far it isn’t worsening and so we’re praying the irritation resolves with time.
As of now we’re looking at about another month to come off of clonidine, get her blood pressure regulated, feeding sorted out and onto bolus feeds (if possible). Although it’s a lot, after all she’s been through we can see a light at the end of the tunnel for this hospitalization.
After discharge, we’ll be keeping Avelyn in Nashville for a time, mainly to be safe but also because she’ll have so many outpatient appointments and daily dialysis will make day trips impossible. We hope to get her home to Johnson City before spring arrives but we have no plans to rush the process. Then, if all goes well, she’ll need to return for another heart cath sometime between March-May. Dependent on those results and how her left kidney functions with time to recover, we’ll be able to know when and if she’ll need her kidney transplant (still extremely likely within the next few years).
In the meantime, we’re doing our best to live a day at a time and savor ever bit of progress and every milestone. It’s not an easy life and we often get overwhelmed with the uncertainty and pain of it all. But Avelyn is still giving her all and who are we to not give ours?
All in all she is making steady progress in the being a baby department and is learning to play with toys, enjoy the sunshine and get food all over her face. All of which are major milestones for our wonder girl!
As always, thanks for checking in and I hope all is well with you and yours!
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