Hello Family and Friends,
I’m back with an apology because I owe so many updates. Primarily, I owe THANK YOU’s to so many people for the immense love they gave us while we were in Texas last month. I have Thank you notes started…I promise. But ya know…the special needs roller coaster has taken over and fried my brain once again. I will post soon about our time in Texas, Emma starting pre-school (!!) and some genetics news…but for now I thought I’d give an update on our current situation because I know many people are probably concerned and wondering.
As most of you know, Emma is currently in the PICU and has been intubated for the past week. It started the weekend before last that she seemed sick…extra secretions, low-grade fevers, requiring some oxygen, and just overall discomfort and coughing. We took her to the Pediatrician that Monday and she was started on steroids to help with any inflammation. By 6am the next morning we were calling the ambulance. Emma’s bedroom is basically a mini-hospital room with the amount of equipment she has, but in the 12 hours since we had left the doctor’s office she had progressed beyond what we are capable of handling at home. If you’ve ever spent time in the Emergency Department (and I sincerely hope you haven’t) you probably think of the standard ER rooms with closed doors and long wait times. We usually get whisked right past those rooms to the back row of intimidating Floor-to-Ceiling glass door spaces filled with scary huge machines and a hectic amount of resident docs, attending docs, nurses, respiratory therapists, Resource IV team all rushing around our girl working on her at once and yelling terms I don’t understand to the person behind the computer screen documenting the chaos. This has unfortunately become a pretty routine situation for us…my mom and I sit back with our coffee and tense shoulders and watch the well-choreographed routine the amazing ER docs have mastered. UNTIL….I hear the words, “Ok we are going to intubate”, and “lets get the paddles on her” (I didn’t realize at the time that defibrillators are a standard precaution for intubation…so cue panicked tears). Intubation has a very scary connotation for me (an explanation for another time), and represents a very serious illness that I wasn’t really expecting in this moment. The team moved quickly and efficiently as they always do, and she was soon breathing peacefully through the tube they placed down her throat. Overall not an experience I wish on any mother…or grandmother, or father who is at home with the baby, or grandpa in another state that has to wake up to this news. But we push through together, right?
So it turns out…Emma caught a pretty common virus called Parainfluenza…Thank you, Pre-school. These common illness’s hit Emma hard and she has a really difficult time managing the extra secretions that comes with them. At some point she likely aspirated on some of the secretions, I think she must have sucked them back into her lungs during one of the coughing fits she was having, and from there bacteria grew to become pneumonia. We made it TWO YEARS since our last hospitalization/intubation from this same thing, so I really do take that as a win. And she is much stronger now that she was two years ago, so I take that as a huge win too.
Ok…now to fast forward to TODAY….Emma has been intubated for a week and a day. They tried to extubate her once already but she wasn’t quite ready and she had to be re-intubated two hours later. Since then her lungs have healed so much more, and her secretions have slowed. We think she is ready to try again, and the plan is to work towards extubation today. She is showing us that she is ready…she is breathing over the machine and taking in nice full breaths. She is passing her “pressure-support trials” in which they reduce the support of the machine to the most minimal settings and let her do all the breathing work on her own. Her labs look good and she is managing to stay relatively calm which is something she struggled with over the weekend. BUT…we most definitely need all the prayers/positive vibes/healing energy that you call can send. My Mommy heart is struggling knowing they thought she was ready once before and she still had to be re-intubated. And we have some other random hiccups…bowel obstruction, what?? AND…on top of everything, Abby is admitted up on the 9th floor for the same parainfluenza virus, though she is doing well and we hope she will be discharged today. So we have a lot on our plate right now, and while I’m doing my best to stay strong and positive, nervousness is my underlying state. We are hopeful and confident that, despite it all, Emma is moving in the right direction. But today is a big day for us.
Please send whatever ya got…whether it be prayers or vibes or just really positive thoughts. We need it all and find comfort in knowing so many people are rooting Emma on. We know she is a fighter and will once again get through the challenges life has thrown her way.
Thank you all for the love and support you have continually shown us on our journey!
With love from the PICU,