Monday, November 1, 2010

Simmer down now!

It's been an interesting weekend. After Jillian's father arrived in the wee hours of Saturday morning, unexpectedly, Jillian and I hoped for a nice quiet weekend. For the most part we got what we wanted, but there are a number of unanswered questions as our sixth week begins.

Aurelia's heart continues to do well. We smile some at the irony of our stay here as her heart is doing so wonderfully that our discharge could have been weeks ago! To date there are no problems with her urinary tract and the VCUG she underwent showed no back-flush into her dead kidney at all. We are still too far out to do anything about her cleft palette and the latest brain ultrasound showed that her clot is still resolving itself and shrinking every day. These are very good things!

Her genetic evaluations have come back with nothing significant that requires any immediate therapy (if any at all)  and Occupational Therapy liked her status as of last Thursday (we won't see them for some time). The Peanut's weight continues to increase and even though feeding has been a disaster she's still holding her own with only a potassium supplement to her daily nutritional fluids.

The PICC line is stable and uninfected, her peripheral line is still functioning and not painful, and the latest cardiac data on the pressures in each ventricle is good, as is the ability of her mitral valve to hold its own. The pulmonary band continues to be effective and the aortic arch reconstruction has not been rejected in any way. In fact, all of that surgery has been a success.

The treatment for her NEC has been bumped to ten days from seven, but that isn't necessarily a bad thing; her daily films show no advance of the infection, but they also do not show it lessening. Even if we *do* get the OK to start feeds again in ten days we probably won't until this airway business is completely sorted out.

The current issue on the table is Aurelia's upper and lower airway. She has had three airway collapses since she's made the move back to the CICU last Friday. She generally has one every twelve hours and only when she becomes particularly worked up. This usually follows a diaper change or a bout of hunger pain. Only one of these episodes, other than the very first which got us back into the CICU, required any kind of sedative to calm her and restore breathing function. The typical pattern for these collapses is a progressive desaturation of oxygen in her blood when she's having a fit. Then we'll see a sudden drop in her saturation levels as her airway (described as 'floppy') is unable to remain open. At this point they will slap the oxygen mask on her and pump her with anywhere between 2 to 4 liters of room air to push the airway open. They will then slowly ween her from the room air over the next few hours and she will be fine.

In the intervening time the staff suctions her nose and mouth for secretions every one to two hours. Because of her severe acid reflux (which is still being medically treated) and because they have a sump running into her stomach to keep everything out of her intestines, and because of her cleft palette, our daughter produces far more secretions in her mouth and esophagus than normal. This goop is usually withdrawn via a tube inserted through the nose into the back of the throat, or directly into the mouth and down the throat into the upper airway.

Dr. Naim is our attending again (yay!) and she'll be setting up a time for Ear/Nose/Throat to examine Aurelia's airway sometime this week. They will (or maybe not) intubate her -  something that is not good for her vocal cord paresis or future eating ability - depending on how far down they have to examine her airway. Treatment can be anything from C-Pap, respirators, to temporary or lifetime tracheotomy. If we do have to go with either of the last two issues we will be here for another two months or so, give or take. Feeding at that point will be done via g-tube. This test coming up is a bit more invasive so it counts as yet another surgical procedure down in the operating room.

So that's where we are. My superintendent let me be absent from a professional development day today so that I could be here for rounds and the E/N/T consult/evaluation. We'll do our best to keep people updated.


  1. Hey guys -- it sounds like the weekend had its ups and downs. I can't imagine how scary the airway issue must be. I will be keeping my fingers crossed that the least invasive treatments prove helpful. I am also continuing to send lots of good thoughts and wishes for Aurelia's NEC treatment. I think of her throughout each day and I hope that she is improving and is resting comfortably.

    I know there isn't much I can say that will help or that will take away the feelings of uncertainty and sadness that I am sure are present at times. I am very glad that you were able to be together as a family, today, and I hope you are able to continue to draw strength from one another.

    Irony seems to find its way to the NICU -- sometimes that sucks. But sometimes it brings little moments of unexpected poignancy. I am hoping with all my heart that the road ahead gets a little easier soon. I know the road will not be easy -- but I hope the steepness and length of the hills will soon start to flatten out a bit. Love you guys.

  2. Thanks for sharing again. Aurelia is always in the back of my mind as I go through the day, as are all of you. I am praying hard - not for specifics - just praying hard and often. We are wishing you and Aurelia less stressful days ahead. Hugs.

  3. Ah Charley...the subject of this entry makes me laugh. I'm guessing you are of course referring to the SNL skit of "Simma Dan Nah!"

    Definitely an eventful weekend. You have such a way with words! I continue to keep you and your family in my thoughts!

  4. kudos to your superintendant!
    Glad you can be together for alittle longer.
    Always in my thoughts and prayers!

  5. Thanks for the update Charley. You do a great job summarizing the medical situation. Aurelia has been through so much and you and Jillian have been there with her every step of the way doing everything you can to help her. I am so sorry to hear that the road is still a rough one for her and I am hoping for good news regarding the NEC and her airway. Aurelia deserves a break to say the least and I am hoping it comes ASAP. Hang in there and know that your friends are still thinking and hoping and praying for your family everyday.