Eliza Update - 3/6 8pm

Dear ones,

Some big news today: if Eliza continues tonight to do as well as she has been over the past several days, she will be extubated (her breathing tube will be removed) tomorrow! We'll know sometime tomorrow morning after the doctors have completed their rounds whether they think she's ready or not. If she is extubated tomorrow, it will certainly be a relief to her; over the past day or two she has become increasingly uncomfortable with the tube down her throat, probably because she continues to become more aware and alert every day. We've been warned not to be surprised if, after a day or two of breathing on her own, Eliza tires out and has to be reintubated for a little while to rest some more. After all, she has barely ever breathed without support, and she is still slowly recovering from being very, very sick.

In order for all of the odds to be in Eliza's favor for a successful extubation, her feeding tube (which went through her nose to her stomach) was replaced today with a duodenal tube (through her nose directly to her duodenum, which is at the beginning of the intestines, bypassing the stomach entirely). This was done to eliminate her reflux. As many of you know, reflux is not uncommon in babies, and with Eliza's muscle weakness, it's not surprising that she would suffer from it. However, for a baby who is intubated or is going to be extubated, it poses an increased risk: if Eliza does spit up, she could inhale the milk into her lungs and end up needing to go back on the respirator in order to recover. The duodenal tube makes reflux impossible, so Eliza will have her best chance to breathe on her own when the breathing tube is removed. Once her breathing stabilizes, the d-tube can be pulled back into her stomach.

In other news, Eliza is now only receiving two of the three anti-convulsant drugs, both at relatively low doses. If she continues to do well and show no signs of seizures, the doctors will consider weaning those slowly to determine whether they are at all necessary. For now, though, all efforts are focused on getting her breathing on her own, so nothing else will change anytime soon.

Please pray! This extubation attempt, whether it be tomorrow or in the next few days, will be a huge test of Eliza's strength. If she passes the test...well, we're trying not to get our hopes up too high, but it will be a big step towards getting our little girl home. Please pray for her to be strong and for us to be patient and accepting of whatever God's will is for Eliza tomorrow.

We'll keep you posted!
Love,
D et al