Every doctor, nurse, and therapist that she has seen, has told us how this pump will drastically change her quality of life. It will make dressing and changing her so much easier and less painful for all involved. Hopefully she will be able to tolerate trips and outings again. And the icing on the cake is we have been told that there is a high possibility that it will help calm her constant vomiting! It is hard to put into words what that means. Unless you have spent extended amounts of time with Katie for the last few months you can't possibly understand what we have been dealing with in regards to the puking. We literally can't go anywhere because she pukes non stop. And even if she isn't puking she constantly gags(loudly) and coughs to the point where she pukes. She has been completely miserable(and quite frankly so have we) There have been so many times when she has puked all over herself, and I just had to sit and cry because I was so frustrated/tired of cleaning up puke.
We wanted her to have this surgery 9 months ago! But of course there are all sorts of hoops she had to jump through in order to have it happen. She had the required trial in August, where they injected her with baclofen in her spine. Her body responded exactly how the doctor had hoped, but when she was sedated they checked her Cerebral Spinal Fluid Pressure(standard anytime there is a lumbar puncture I guess) and it was high. So we were all sent into this crazy panic expecting the worst. We weren't sure if she was going to require surgery to remove a blockage from her brain, or what the hell was going on!
She needed to have an MRI to determine and see exactly what was going on. That of course ended up being a HUGE pain in the ass. Our local hospital kept giving the run around on whether or not they would do an MRI on her because of her weight and size, because she has to be under general anesthesia for the procedure. Finally Oakland Children's Hospital got it together and did the MRI in OCTOBER! So there was two months wasted. LUCKILY there was nothing wrong that could have caused the CSF pressure to be high. It was a "false positive" if you will. We were told that if the person is not in exactly the right position when the pressure is checked it will read as high when really it is not. Whew!!
Later in October she went to what we thought was just a consult and pre-op type appt to discuss and schedule the baclofen pump surgery at Oakland Children's. Boy were we wrong! We were told that she needed to see their clinic doctors because we had the trial done at another hospital and their first appointment she could get into was February 2012!! We didn't think she could wait that long. She was in constant agony and it was getting worse and worse. During this same week her orthopaedic surgeon also informed us that her scoliosis was progressing rapidly and she would need to have spinal fusion surgery to correct it. At that time he said approximately 3 months after her pump was placed he would want to do the fusion.
So we were in limbo for weeks, trying to get into the Oakland clinic sooner, and also meeting with a surgeon at Sutter Hospital to see if he could do the surgery sooner. It was a MESS!! It was such a stressful awful time.
Finally we caught a break and they squeezed us into clinic at Oakland in December. We thought this was going to be a easy peasy appointment where they looked at her chart and agree that the pump was necessary, blah blah blah. Little did we know they had something else in store for us! Abby(Katie's Mom) took her to this appointment by herself, because Jim and I both had to work that day. Like I said, we thought it was just a check in appointment! So imagine my shock and panic when Abby called and informed me that the ortho surgeon felt that she couldn't wait any longer for her spinal fusion surgery, and that he was booking her for surgery in TWO WEEKS!!! We were not at all prepared for this. Here we thought we had at least a few months to prepare mentally(and Katie physically) for this huge huge operation.
But we all just accepted the situation(we have all become really good at this) and started putting a plan into action. And on Dec. 21st Katie had her spinal fusion surgery. She spent 2 weeks in the hospital, and her recovery has been nothing short of amazing! I am still shocked when I think about the operation she had just a few short weeks ago, and how well she is doing. She is so tough it is crazy.
She was booked for surgery on Jan. 25th, but two days before the office called and had an emergency they needed to book for that day, so it was postponed for one week.
Now here we are, finally. Surgery tomorrow. It is still kind of hard to believe that we are FINALLY here. After all of these setbacks and delays the day is actually upon us.
I will update the blog after her surgery is complete and she is settled in her room. Her surgery is scheduled for 1:30 tomorrow afternoon. Jim and Abby will be there, I am hanging back with Caleb and Reese.
Katie is finally asleep. She did not sleep at all last night. But she is finally passed out and I hope she stays that way all night!! Here is sleeping beauty:)
