Happy Holidays! I’ve been quiet for a while, I know… life has gotten the better of me & “free-time” is hard to come by these days. I’m not complaining, though, & am thankful for the craziness in our lives. With the boys growing up so quickly, things will slow down soon enough. And when that time comes, I know how badly I’ll want these days back. “Savor & enjoy the crazy” – that’s my motto at the moment!
The Disney cruise was fun & all our medical supply issues were resolved – no problems there. Thanks, again, to all who helped with that! Emerson was a bit overwhelmed by the number of children on the ship & we sailed through a hurricane (missed our last port-of-call to avoid the eye of hurricane Joaquin). We made the best of it though. And if you can believe it, I haven’t had time to look through the pictures yet – haven’t even taken them off my memory card. Ugh. “Savoring & enjoying the crazy!!”
Sadly, I have a few minutes to post today, which reliably means one thing – Eme’s back in the hospital. ‘Tis the season. She spiked a high fever with vomiting & rigors Monday night. I took her to Denver Children’s Hospital where they stabilized her, started antibiotics &, within hours, had us on a life flight to Omaha. We’ve been in the PICU all week – Emerson’s infection is under control & we’re left, now, dealing with the fall-out from it all. We are sitting in a very familiar place, literally & figuratively speaking, today.
In encouraging news, this admission has gone much smoother than past ones. I’ve done very little advocating and very little stressing – everyone involved reacted swiftly this time. They know Emerson well & are coming to learn what she needs. They may not understand “why” she needs it, but they know what works. And instead of waiting for her to crash then put her back together, they worked hard to prevent the crash this time. All in all, I suspect it will save us many weeks on this admission & am hoping it means we’ll be home for Christmas.
In other news, Transplant called in the Palliative Care team today. They assure me they’re not “giving up” & will not ask me to sign a DNR or similar paperwork. They believe, though, that some on-going issues are best dealt with from a quality of life perspective now. Most doctors are uncomfortable prescribing the doses of medications that Eme requires &, already, we are doing things unheard of in the outpatient world. Transplant is not quick to refer patients to Palliative Care & says they’ve only called them a few times and never for a child as young as Emerson. I know many people have had wonderful experiences with Palliative Care teams – this transplant team, though, is in the business of putting people back together, at any expense & against all odds. They are not in the business of admitting that they cannot. Children in this program die while trying to be saved. All may not agree with this approach, but it is one I needed for a long time (& still do to some extent). Transplant was a bit concerned with how I would take the suggestion, but I agree – it’s time (probably long over-due actually).
In all, I will say that I have great respect for this transplant team. Eight years ago we boarded a medical flight to Omaha for transplant evaluation – a dark haired, fair skinned little girl with big eyes and a big personality and an innocent, naïve mom who knew nothing about this world and desperately needed to hear 4 little words, “we can save her”. We didn’t pick this team. We were told to go. They accepted Emerson into their program and listed her for transplant, but they didn’t really pick us. We were sent to them. Little could either of us have known the long road that lie ahead. So many times this relationship “should” have ended. So many times it did not. And through it all they’ve been stuck with me – an over-involved mother who refuses to give up & expects much from this team, and Emerson – a complicated patient who defies all medical odds and understanding most of the time. Indeed, the cruxes of our admissions lately have had little to do with Eme’s transplanted organs. She holds many “onlys” & “firsts” around here, but still they continue to accept her back time after time & they continue to work through her issues, organ related or not. And they continue do so long after many others have stopped. It’s not always easy for me. And I’m certain it’s not always easy for them either. We’re in this together, though, & together we’ve accomplished much! 🙂
I hope this post finds you doing well & enjoying the sights and sounds of this magical season! I visited the gift shop yesterday & picked up a few decorations. There’s no snow here in Omaha & this little room is dark and sterile – if not for a few reminders, it would be easy to forget that Christmas is only 2 weeks away. Collin has finals next week, and then travels to Boston for hockey. Bradley is busy finishing his semester and dreaming about his next snowboard flip. Jim is busy at work, and Eme & I are here. Christmas lists have been checked off & shopping is well under way… Meanwhile, I’m wishing for only one thing this year – that we’ll all be together again soon. Hardships have a way of cutting through the commercial chaos of the season and reminding us of what our heart really desires. Indeed my list this year is short.
I’ll keep you updated on Operation “Home for Christmas”!