Saturday, April 28, 2012

Surgery Schedule and The Port of Doom

This week has been so long, and yet I can't believe it's already over - I have so much that isn't done! 

First, Scarlett's big cranial reconstruction surgery is scheduled for just a week from now: May 8, 2012.  It will be done by the surgeon who removed the tumor at Children's Hospital Oakland, in conjunction with a very highly respected pediatric plastic surgeon.  That's just 9 days from now, and we are nervous and anxious, but glad to get it over with.  We don't know yet how many procedures it will take (probably 2 or more), how long we will be there (estimates are at 1-2 weeks, maybe more), or how they are going to go about fixing her skull.  We meet with the surgical team next week to discuss the details.

It was time for Scarlett's monthly blood tests, and it did not go smoothly at all.  Last month, we struggled, but got it on the third try.  This time, we weren't so lucky.

Tuesday, we went for a hearing test.  The doctor was running about 30 minutes late, but eventually we got Scarlett's hearing test done - no real changes, but we're not getting good data in behavioral tests (where Scarlett is observed for her responses to different tones and volumes), so she'll have a sedated brain response test next time to make sure her hearing is stable and her aids are adjusted properly.

Then we headed to the hospital down the street from there for labs.  We tried, but nothing drew back.  We'd done this before, so we knew step one was to put in medicine called TPA to break up any clots.  We were scheduled to come back the next day.

Wednesday, we went to occupational therapy, where Scarlett still refuses to drink anything.  Wet = no good for her.  She's sticking with dry crackers and dry fruit.  We've decided to stop trying baby food and just keep with whatever we're eating.  Maybe she'll find a flavor she likes more than animal cracker.

Then we headed back across the bay to the hospital.  We tried to draw back the TPA and get the blood...but nothing.  Just bubbles.  We weren't sure what to do, so we waited for further instructions.  Unfortunately, the decision was made to try TPA again, so we had to reaccess Scarlett's port (numb it with cream for 20 minutes, then insert the 3/4 inch needle).  Second dose of TPA in, then back home.

Thursday morning we met with the physiatrist who monitors her therapy needs.  She's sees Scarlett every six months to make sure her therapy goals are acceptable, attainable and that we have all the equipment necessary.  She works at the other hospital where Scarlett has had and will have neurosurgery, and knows the neurosurgeon well.  She suggested adding a procedure - injecting Botox into Scarlett's neck muscles - to her surgery schedule to help correct the constant head-tilt she has had since her tumor was weighing her head down.  Despite stretches, massage and growth, she has never been able to hold her head straight consistently.  We're hoping that the Botox will relax the muscles of her neck so she can re-learn her posture with her new skull.

Then we headed in for Day 3 of trying to get the port to work.  With fingers crossed, we accessed her port and tried to draw...but nada.  We waited for the message to make its way to the right people, who passed it to the next department: surgery.  Scarlett then had a chest x-ray to see what was going on.  Apparently, Scarlett has outgrown her port.  When it was placed, it was measured to fit her tiny 4-month-old chest (she was only about 12 pounds at that point!)  Now, her 18-month-old chest is much bigger, so the catheter is no longer is the correct position.  Lots of discussion, surgical consent-signing and more talk later, we decided that this port needs to be replaced.  We left that evening with plans to schedule surgery for early next week.

Friday morning, we drove to Berkeley (about 30 miles, but 60+ minutes with Bay Area traffic) to Scarlett's school.  After her class, we drove around so she could take a nap, since she had another appointment that day.  While she napped, I called the surgery scheduler to make plans for the port surgery.  She hadn't heard anything about it, had no orders, so couldn't, she said, there was absolutely no openings next week.  So, she said she would call our trusty neuro-oncology NP to see what we could do.  We returned to the school for a speech evaluation. Now that she has reached 18 months, she qualifies for speech therapy.  The evaluation went well - she has a few emerging words, is interested in noises, makes saliva bubbles and is generally just in good shape for therapy beginning soon after surgery.

Back on the freeway for the drive home, I knew to expect a call, so I had my bluetooth ready.  2 or 3 exits down the road, it beeped, and Trish, our NP, gave me the update.  Scheduling to replace the port will be a nightmare at either hospital, especially for something she doesn't really need.  I asked a million questions and we talked about it for about 30 minutes, but eventually came to the decision that her port will be removed for good and not replaced.  Ideally, we would keep it until at least 6 months post-chemo, but Scarlett, as usual, has her own schedule, so we're going to just go with it.  The hope is that this can happen during her big surgery to reduce the number or times she needs anesthesia, but if not, it will just wait until she's stable again.

SO, after hours of waiting in the clinic, 3 trips with $5 bridge toll, 4 port accesses, and a sit-down with a confused surgeon, nothing happened.  Can you believe that??  I'm glad she won't have to have a separate procedure, and that we an do our final week of therapy and regular life before her surgery as planned.  Throwing an extra surgery in to the mix was really throwing me for a loop.  Now, we're working on getting ourselves ready for hospital life once again - cleaning the house, packing, planning for Scarlett's entertainment (more on that later!).

Oh, and as if that wasn't enough, we're headed to a camping trip next weekend, returning the day before her surgery.  I think we've lost our minds...


Darla said...

Sounds crazy!! I hope the hospital gets Scarlett's orders corrected fast and we hope you have a great camping trip!!

Crazed in the Kitchen said...

Sounds like you have a lot on your plate--as usual. But it sounds like you have it all under control, with a positive attitude to boot--as usual! Have fun camping!

V/P/A/A said...

Wow, what a week. Please let me know if there is anything you need!

DiJe said...

WOW! I hope you have the best, most relaxing time out there camping. I looooovvveee camping in CA. It has been a very long time since I was up north, but it is so beautiful.

Kristen said...

What a week! I hope that you all are able to relax! I am happy to hear the cranial surgery is finally scheduled. If you need any ideas on what to bring to the hospital and what to expect there is a great group of ladies who are moms of babies who were born with craniosynostosis (a cranial deformity that requires surgery) My son had his surgery in October and was in the hospital for a little less than a week. Though the surgeries are a little less invasive than Scarlett's surgery, it is still considered a major surgery and some of the same things have to be done depending on the type of cranio. The ladies also do care packages for the hospital those facing surgery with handmade things. If it is anything like my son's surgery there will be alot of head swelling and eyes may swell shut so toys that are musical or have flashing lights are great, soft blankets to cuddle with, and outfits that do not go over the head. If you want more info just search craniosynostosis in the search engine on facebook and there are several pages to join such as Our Cranio Circle