PCU, Day #38, More Surprises

Hannah got a decent night sleep last night, finally!  She fell asleep at 5:30 pm (as did I), and she slept off and on for about 8 hours within a 10-hour period!  That is the best sleep she has gotten since we have been starting to get her off sedation!   And even right now, it is a bit before 9 pm, and she is finally asleep.  I hope, hope, hope that she does just as well tonight as she did last night.  Since she is not napping, this is the only time her body really gives herself time to recover.

Hannah met with her OT today who worked on spoon and bottle feeding again.  She was working with the butterscotch pudding, swallowing it (when it was put on the side of her mouth), but then she coughed up a bit of it into her trach HME (container that collects secretions and humidifies incoming air).  This is not good.   It means that she aspirated the pudding into her lungs instead of it going down the esophagus.   Needless to say, a swallow study is scheduled for early tomorrow morning to see if we now have an aspiration problem where we did not before this whole mess.

I changed out Hannah’s trach for the first time tonight.  We had done the CPR and trach change classes, practiced on dummies, done the daily trach care (changing out the collar and cleaning her neck).   That is the last thing to check off the list in terms of the things parents must do before they are discharged.  It was funny because I was so nervous because I had never seen Hannah’s stoma (hole) before, but it was really not a big deal.  So now she has a Shiley no-cuff trach, size 3.5 (for other SN moms).

Earlier today, Hannah’s attending came to visit us (which was so unusual since he had never done that before).  He wanted to let me know that Hannah and I “have our plane ticket,” and we are leaving at 8 am on Friday morning for Las Vegas!!!   What makes this cute is the transfer coordinator came by later in the afternoon asking me if the attending came by.  Apparently he was very excited for us, and he wanted to be the one to share the news.   She joked that he “stole her thunder,” as she likes being able to give good news.

But we are ready for transfer on Friday morning.  To say I am excited is an understatement, a huge understatement!!!   All the coordination is being finalized, and there is an attending there who will be there on Friday to take over Hannah’s care.

I am so close to seeing Abigail and Ethan, gosh I miss them so much!  On a separate note, I am so proud of them — they got their report cards… Ethan got all A’s (in the gifted and talented class no less), and Abby got mostly S’s (obviously talking too much and not listening is not her strong suit yet!).

It is 9 pm now.  Hannah is asleep, and soon I will be too!   My schedule is so off too — I have been up since 3 am this morning!!