Trach Free (for good!!)

Sorry for the delay in updating, things have been busy here. Elizabeth was finally released from the hospital on Thurs July 28 (my 30th bday), trach free!!! Definitely the best birthday present ever. She did have the sleep study done on Wed night, which showed she needs oxygen during sleep. She did have some obstructive apnea but the Dr was not overly concerned about it and felt confident she will outgrow it. She has done really well at home, we think having the trach out has made her alot happier.
  Yesterday she had clinic with the transplant team and we started discussing the things we need to get done before going home. As of now the plan is Mon next week she will have another Ph probe placed to check for reflux, and again we will discuss the need for the surgery to redo the nissen fundoplication. I am hopeful this probe will still show a small amount of reflux and we wont have to have the surgery done. She will also get the IVIG infusion, and we will plan to continue this monthly at home for at least 6 months. Which means we may be leaving her broviac line in place instead of pulling it. If we keep it she wont have to get stuck for an IV every month, but if we keep it she will continue to have a source for infection, and we will continue to need to care for the line daily. So that one is still up in the air.  They are also scheduling another ultrasound of her arms/legs to check for blood clots. Her last one showed none, but we want to be sure before we decide on stopping the blood thinner injections. Then the following Mon Aug 15 she will be sedated to have pulmonary function testing done. And that Fri Aug 19 she will have the bronch done. If all of this goes as scheduled without complications we "should" be returning home to TN that weekend. I am pretty excited that home is "insight" but I also know better than to get my hopes up, with Elizabeth this could change quickly. So we will just take it week by week and see how it goes.

SUPERGIRL :)

July 28 - 'home" without a trach!

Elizabeth wearing her oxygen for bedtime