Cyclone

The past few days have felt like I am a cyclone of a mess, rushing from place to place, checking off my list, but feeling like I have not accomplished anything enough to finally rest.

Yesterday I woke early to be at the hospital with my sister Megan while she labored and delivered her third baby. Such a gift to have been able to help coach my sister through all of her deliveries and then witness the birth of my nieces. No one knew the sex of this baby before she made her entrance into the world (I did think it was a girl, though!) and I think it is just perfect for my sister to have a home filled with princesses! Baby Harper is beautiful and healthy!!!
Meg and I both labor and deliver super fast, so with a start time of 5am, and having Meg already 5cm dilated going into the hospital, I was sure I would be able to make it to LA for Liz's appointment there in time. Harper had other plans, and her face- up (instead of down as it should be) and cord around the neck self took longer than we all expected. I could see her little head stuck in the same spot for over and hour and I told her over and over again to please hurry up so that I could make it to LA in time. She was born at 1:13 and I ran out moments after her birth to get to Los Angeles for Liz's 2:30 appointment. Phew.

The LA appointment was with a new Immunologist that our pediatrician asked to see us ASAP. He is supposed to be amazing at putting "puzzles like Liz" together and we were to be seen as soon as he could fit us in. In only 4 days we were squeezed into his schedule.
I liked him very much. He entered the room with four aspiring physicians and spent an hour and a half with us. I could go on and on about all that was talked about, but it comes down to just a few key things. He was recommending that we stop IVIg, at least for now. This is a huge thought. We just started, and have been clinging to this as our fix-all for Elizabeth. He gave clear reasons behind hos recommendation, and they too seem rational and appropriate. Liz's IVIg was schedule for 8:00am today, so I literally had hours to make my decision. He bluntly said to me "you are stuck in a hard place and I don't envy the heavy decision you will have to make tonight."

After a very long night of thinking and weighing everything, I decided to proceed with the scheduled infusion this morning. I will have to talk to all of the other doctors to get their input on what the CHLA is recommending, and will decide at that point if we want to keep going with the IVIG treatments.
The CHLA doc does agree on some things. First, that Liz is sick and that "something is going on" (no kidding?!!!) and that she needs more testing. He feels that her issues stem from her neutrophils. So frustrating!! He also agrees with the UCLA/LB Immunologist on the recommendation to start her on inhaled antibiotics, to be given long term. The thinking behind this is that 1. Being on antibiotics, even without having an infection, will keep her from getting infections that then lead her to need antibiotics that in-turn cause the CDifficile to rec cur. 2. She has had so many sinus infections over the past three years, and an inhaled antibiotic may help that better than an antibiotic taken by mouth.
Of course, inhaled antibiotics are not common practice. Yesterday I was struck by the thought of how many times we have been presented with an option for Liz that is either not usual protocol, new and untested, or a trial medication. I have begun to worry that these will add up and I am harming her. Still, my back is against the wall in these cases, and it has been necessary. It makes me sick, literally, to think about.

So, she had the IVIG today. We stayed for two extra hours because she is dehydrated and the doctor ordered for her to sit with iv fluids running. Today is one of the days when I have looked at my girl and thought of how sick she looks. She has "good days" and "bad days"....and then she has "sick kid days." Today she looked like a sick kid.
Last time the infusion ran for 4.5hours, but today they "bumped up" the speed, so it only took 2.5/3 hours to run. A little break down in communication caused this to be done, and it is not something I would have wanted, as running the IVIG faster can cause more harsh reactions in the days that follow. Please pray for Elizabeth over the next few days; specifically that headaches, nausea, fatigue and especially fever are minimal.
Thank you for your support and prayer!

Tomorrow the day will again begin early as Kate and I head to her first Club Volleyball tournament!!! She is super nervous and excited at the same time. We are learning that these tourneys are no joke, complete with each club setting up "camp" for the day and tailgating. Fun! It is amazing how life just goes on during all of this with Liz...because we'd have it no other way.
Looking forward to a Kate day of volleyball!!