How time can get away from me...

It's been so long since I have blogged anything here.

July is past us now and Kiera's surgery site is looking good. We are still having issues with the J tube site, it's been a constant battle with leaking that leads to a big rash around her stomach.
Her Doctors keep telling us that J's are notorious for this, but I tend to disagree only for the fact that the old j did not do this, it was up a bit higher than the new one so I think that might be part of the issue.

We have tried everything we can think of and nothing seems to help the rash, but then why would anything help when there is a constant issue with leaking?

I hope to one day find the answer but I hope that would not involve another surgery.

Kiera has been doing okay since July although a few times in and out of the hospital, but mostly related to the surgery.
She was just in for 3 days for what we think may have been a intestinal bug, but with Kiera nothing is ever simple.
Kiera seemed to have had a cold the day prior and the next morning we had an early appointment. While getting ready Kiera vomited, the house called me to see what we should do about the appointment and it was decided that we cancel because this was going to be an all day appointment and if Kiera was not feeling well, I did not want to put her through this.

The house called the clinic to cancel, then with-in a half an hour they called me back to say that Kiera had thrown up 2 more times and that her Oxygen was down to the mid to low 60's. They tried suctioning and gave 10LT of O2, that only brought her Oxygen up to the mid 80's. 911 was called and the EMT's made the decision to take Kiera to a local hospital rather than the one that we use in the city to get her stabilized.

We met her at the hospital and she did not look great, she was pale and she continued to vomit. Her heart rate was higher than her normal (she has tachycardia) and her blood pressure was at her normal low, but the Doctors were worried about this until we told them that this was where Kiera's numbers are most of the time.
At one point her fingers and toes got very gray and the nail beds were purple, then she started to just shiver, she would do that and then quit, then do it again... very scary to see as her mom.

She did need to be on oxygen up until the day she left the hospital but did not need to remain on it.
So in the end it seemed to be a 24 hour bug with the added aspiration episode to complicate things for a bit.

Kiera just had a nice break from her seizures since the hospital stay, she went 13 days without any seizures!!
But now they are back with a vengance, it's strange how things can change so quickly in just a day.
Yesterday she had 5 seizures ranging between 7 to 13 minutes, two of them required rescue meds and today 3 seizures, so just to try to stop them from continuing today, she received another rescue med.

We will see what tomorrow will bring.