I realize once again it has been awhile since I have updated you all on Ally but for once there was a method to my madness. Of course my method backfired so I figured I would just go ahead and update even though it won't quite be the update I had hoped to write.
First off I will start off with the good news, Ally got her trach out last Wednesday and has been doing wonderful without it. She was able to talk fairly loud with the trach but without her voice is even louder and much more clear. She is also so proud that it was taken out, she walks around lifting up her chin so that everyone can see!
Onto the other news. Today Ally's picc line was supposed to be pulled and transplant had planned to officially discharge us to home! Well apparently Ally was not quite ready to say goodbye to Pittsburgh so last night she spiked a temp. Blood cultures and labs were done today and we will find out those results tomorrow.
The really bad news is that we saw cardiology today and they said that if cultures grow they will try one more course of antibiotics but if the fever returns and cultures turn positive again than we will have to talk about surgery to remove the suspected endocarditis lesion.
Now some more bad news. Thanks to all of Ally's IV antibiotics (I am not really complaining about them because there has been no way for them to be avoided) she has some moderate hearing loss in both ears. The audiologist that we saw today recommended that Ally be fitted for hearing aids. Great! I am so glad we could add one more thing to her list of problems!
Can you tell it was a frustrating day? Though tomorrow is likely to be even worse if the docs make me bring Ally in to be admitted for positive cultures!
Since it is already 1 am I better just get to bed and focus on positive thoughts:)
I think it has been almost two weeks since I have updated so I will try to keep it as brief as possible. This was not one of those times where no news has meant good news, it just meant that I had a computer that was not working!
We did make it home for Memorial Day weekend and had a great time visiting with family and friends. I know the girls enjoyed their time at home a lot, especially all the time they got to spend with their cousins:) Unfortunately Ally and I had our trip cut short when she spiked a fever on Memorial Day. Once I got her fever down and felt comfortable with how she was acting we hightailed it back to Pittsburgh. I was worried that she would start to act septic again and I did not want her to have to be admitted at home and then transported out to Pittsburgh (just to much of a hassle and probably would mean more time in the hospital).
Thankfully all went great on our trip back and Ally did not have another fever. Unfortunately once transplant got wind of the fever they made me take her in to be admitted, blood cultures were drawn and in less then 24 hours we had a positive culture. I of course was not surprised by any of this because I was already having problems with the one port of her central line prior to even heading home for Memorial Day weekend. So last Thursday her line was pulled and a picc was placed. The picc needs to make it through this round of IV antibiotics and then an echo will be repeated to check on the endocarditis. If cardiology is okay with how things look then the picc will be pulled and Ally will be without a line for the first time in her life!!! This also means she needs to keep up with her drinking so that she does not become dehydrated but I will bribe her with almost anything to keep that line out of her:)
Next up is a million appointments this month to try and wrap things up so that we can head home to stay. This week we are trying to schedule a last minute bronchoscopy. If all looks good then next week when she has her sleep study they will downsize her trach and cap her off for the night. Then if all goes well that night the next day they will pull the trach out and observe her for another 24 hours and Ally will be decannulated for the second time!
I think this week we have 4 more appointments scheduled plus hopefully the bronch so it will be busy. Ashley has been home since last Friday so I am missing her terribly but when I talk to her on the phone she sounds so happy to be at home. Ally and I will be headed home for the weekend. What did I used to do with all my free time???