Getting home from the hospital brings a whole new set of challenges, ones we honestly hadn’t quite anticipated, so anxious were we to leave. We were thrilled to get home when we did and be able to spend the weekend settling in and giving Maya some much needed attention though.
The first thing we were faced with after our initial excitement at being out of the hospital was the medicine regimen. Zoe takes quite a few medications now, and they have to be taken on a schedule each day with very exact dosing. Giving her her meds for the first time without a nurse to measure them out and help get them down was a huge task, and it cut through the excitement a little more quickly than we might have liked. We are out of the hospital, but the reality of what Zoe is facing is still ever-present.
To get things in order we determined which meds Zoe seemed to tolerate the best, which helped to be taken early, and which could be done at the end and kept down after she already had taken several. She gets her tummy medication first to help keep the more difficult steroid and cyclosporine down, and we finish up with her banana flavored thrush med to try and end on a good note. One of her medications, the dexamethasone, she hates so much that we have to mix it with cherry syrup just to keep her from spitting it out. I don’t blame her one bit.
To help organize we asked the pharmacy to make a med calendar, which they will do but don’t necessarily do unless requested. We tacked that up on the wall in one of the bathrooms to refer to every time we run down her meds. Currently, she takes them twice a day, 8am-ish and 8pm-ish. I say -ish because it takes quite a while to get them down, and we try to feed her in between the first few and the last few so that she has time to let the tummy med take effect.
Each med requires it’s own syringe (no needles) or eye dropper with variable measurements, so we label them with Maya’s hair bands. They come in a variety of colors and work really well for this application. We mark on the calendar which med is which color, and we run down the same order of meds each 12 hours. After Zoe has taken them, we sterilize the syringes and eye droppers in boiling water — not required we’re told, but we’re playing it safe. It takes 5 minutes so time well spent I say.
We had some confusion and consternation around her meds coming home, which made it a little bumpier than it might have been, but I really think it’s just an adjustment no matter what. I doubt we could expect and easy time of it with so much to learn.
We missed picking up her last med when the hospital pharmacy closed for Good Friday, so we had to go to one outside the hospital. It was, to be honest, a little sketchy, but we had no choice as the selection of “compounding” pharmacies here is limited (some meds have to be mixed especially to order, and not many can do that apparently). I won’t go into it much, but suffice it to say we went back and picked up the same med from the hospital when we could on Monday, due to our fears about the safety of the other one.
There was also some confusion as to dosage, one of her meds was listed differently on the bottle than it was on the pharmacy’s med calendar. We chose to administer the lower dose of the two until we were able to confirm which was correct — and were relieved to hear that we had chosen wisely.
It was another reminder that a baby’s health really is in the parent or guardian’s hands, even as we rely on hospitals and pharmacies to minister to her.
Evan and Michelle- I have had your family in my thoughts and prayers during this difficult time. Great to hear how wonderful a team you all have been! I am happy to hear Zoe is home now and can appreciate the anxieties associated with the transition back to home. I’ll continue to send positive energy and appreciate the updates you are providing. BIG HUG to Michelle!
I know you are excited to be home but a little scary with all the medication to administer. I applaud you and your ability to get a 3 month old to take all of that. It is so hard just to get one medicine into an infant.
I know Maya must be glad to have you, Michelle and Zoe at home. We continue to prayer for you each and everyday! Take care and we love you!!
Evan and Michelle,
I’m so happy you brought your baby home, and are on the road to a new normal. Your family is in our thoughts and prayers, and i hope to see soon you had a boring non eventful day where everything goes well. Give Maya special hugs for me, too!
Shantih and Mario