Fast Track

We do our holidays in the hospital this year, so why should New Years Eve be any different?

Hannah's oxygen monitor kept going off all morning yesterday, even during daylight when she was awake. Her color was just not right. She looked gray and sickly. So I took her to the emergency room around 2:30. While there her oxygen dropped into the 50's and her heart rate dropped into the 80's.

The pediatric hospitalist from upstairs (who of course remembers us) consulted, and got in touch with our surgeons, Dr Schramm at UVH and Dr. Smith at Primary Children's.



Car Seat + Stretcher for ambulance ride

Aside from going home and continuing with the status quo (which was no longer ok with me!), we could 1. Be admitted at UVH and Dr. Schramm would try the dilation again, or 2. Be transferred to Primary Children's Hospital in Salt Lake City where we can consult with more specialists.  At Primary's Hannah could be seen by a neurologist and a GI specialist. Dr. Smith said that if any other problems could be ruled out he would consider doing the myotomy early, before getting to 11 pounds as he would have preferred.

Dr. Schramm said if we chose to stay at UVH, he would consider doing the myotomy but it was up to me and my comfort level. A week and a half ago I would have jumped at that offer and signed on right away, but I'm learning to wait for reason, assess the options more calculatedly, and have patience in the timing that is best for Hannah. I am glad I have learned what I have in the past weeks, because I now realize the benefit of meeting with these specialists before having the surgery.  If I had my way, she would have had the myotomy a week ago, and what if there were more problems that arose afterward? I would not have been prepared for that.

When we came home from the hospital after the first dilation procedure, I though Hannah was all better, and she wasn't.  When we came home on the feeding tube, I thought we would have that for 2 weeks, have a perfect swallow study a week later, and be off the feeding tube and finally have Normal, and I was also wrong. So I'm learning not to get my hopes up or try to rush the process.  If I keep expecting that each intervention is the final step, I will keep being disappointed. I am now accepting that this process may be much longer than we would have wanted, and to brace myself for the long haul.  And I've learned to be okay with that.

Hannah's esophageal condition is so rare that there just isn't enough evidence to tell us what the right course of action is and when.  When I ask the doctor if the myotomy is the definitive solution, he says "We don't know."  When I ask how many dilations is ideal, he says "We don't know." When I ask what age is the ideal age for the surgery, he says "We don't know."  And its not because he isn't an exceptional surgeon, its because there just isn't enough information, research, and evidence. And its also a relief to realize that this particular surgeon is not too cocky to admit that. Each medical journal article talking about this condition has at most 5 cases to talk about.

So we are at Primary Children's.  We came by ambulance (no lights or sirens though), so I can cross "Ambulance ride" off my bucket list.  We got here at 7pm and settled in.  While she doesn't look sick, she is. Her apneic episodes are more likely a result of the coronavirus rather than a complication of her swallowing problem.  At midnight her heart rate was over 200, her fever was 102*, and she had a febrile seizure that lasted 10 minutes.  They did blood work and a lumbar puncture. Today, results and specialists. Right now the respiratory virus is by far the bigger concern than her esophageal narrowing.

I'm so glad I am here.  At home I was worried for her life.  Here am I not worried because I know she is in the best possible hands.  I don't worry that she will stop breathing.  I would not have known how to handle a high fever like that or a seizure at home, and I would have wished I were here. Now I am hopeful that we are on the Fast Track to meeting with specialists and getting answers.



So the take home message here is do not delay going to the Emergency Room.  Do not wait for your baby to turn blue or stop breathing. Do not wait for your baby to have a seizure at home. When in doubt, GO!  If you dread going to the hospital because its expensive and stressful and its a holiday, DON'T!  If you are concerned about paying extra copays because you are overreacting and its probably nothing, DON'T.  It's just money, and your baby's life is worth more than that.