I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Friday, February 20, 2015

Procedures and Hospital Stays

So we have a few procedures and hospital stays on the horizon.  Unfortunately Aaron's biopsy came back positive for another melanoma.  He will be going in next week to have a similar procedure to the one he had over the summer to remove additional tissue and check his margins.  Over the summer the area was on his chest, this time it is on the back of his arm. As I mentioned before, he has had two other areas that were biopsied  that were atypical so needless to say I'm a little concerned that he's having to have another procedure.  He's a little discouraged, and a little tired of being a pin cushion but I keep reminding him that's why he has to have his skin checks done religiously.   Easy for me to say since I'm not the one being cut every few months.

Alex will be going into the Epilepsy Monitoring Unit in two weeks for another stay to monitor her brain waves to see if there are any changes from her previous tests.  Additionally they will be monitoring what her sleep patterns look like, and if we're lucky, we will be able to capture a seizure.  I say lucky because it's the only time I ever pray for a seizure - because getting hooked up like this is not fun, for anyone.

Yesterday we went and met with the ENT at MCV that our neurologist suggested.  At this point it looks like surgery is the only answer to all of Alex's drool issues.  The ENT said Botox really wasn't a viable option for her for several reasons.  One, her problem is getting worse and she said she uses Botox for people who might need a quick fix or who have had some regression but are likely to regain swallowing functions.  Secondly, it's something that would have to be done every 3 to 6 months, the dosage needs to be tweaked several times to know the right amount that would work for her and each injection would require anesthesia and a hospital stay.    I liked the doctor, she answered all of the questions I had and was very thorough in her explanations. Alex was listening very intently to the doctor as well.  When we were done talking I asked Alex if this sounded good to her - if she was ready to be rid of bibs and being able to wear cute shirts that people could actually SEE and she smiled and raised those eyebrows as high as they would go.  The doctor said she does this surgery quite often and has seen great results.  Basically you have 6 major salivary glands (2 on each side).

She will be doing an excision of  her Submandibular glands  and will completely remove those glands and that will require two incisions under her neck. She will also do a bilateral ligation of the Parotid glands which will be done inside her mouth and she will tie off the glands so they cannot produce saliva.  We asked about dry mouth as we definitely do not want to trade one problem for another and she said the two remaining Sublingual glands, along with the hundreds of tiny salivary glands in her mouth will produce enough saliva to avoid dry mouth.  This surgery will hopefully make the amount of saliva that will be left manageable for Alex to swallow.  She'll have surgery on a Wednesday and it will be a one night stay. She'll be swollen for a few weeks so if there's any time to be thankful that she has a feeding tube, it would be now.  Alex has been laying on her bean bag in the living room watching TV in front of the fire place (for the record, it was 1 degree here this morning!)  as I write this -  I just went to change her position and she is completely soaked with spit - her shirt is soaked, her hair is soaked, her bean bag is soaked.    As much as I hate to think about another hospital stay or recovery period, I would be lying if I didn't say the thought of eliminating all that almost makes up for that.   I seriously am beginning to feel like a whack a mole game.  Every time I pick my head up from something I feel like I get bopped on the head with something else.  I think I'm going to try an ostrich approach to things in the future - maybe it's safer if I keep my head buried in the sand!


Susan said...

It sounds like this is going to be a good thing for her. I hope it works just like it's expected to! Sorry to hear about Aaron.

Anonymous said...

Hi I just came across your blog and wanted to tell you my son had this surgery to reduce drooling many years ago and it was 100% successful! He doesn't have dry mouth but he no longer drools. We were able to throw away the bibs forever. The only sour note was that he had tremendous swelling and discomfort in the first week. At the time he was spoon fed and that was an issue as he refused to eat or drink. They say this surgery isn't always successful but in our case it was and I hope it will be for Alex too!

Donna said...

Thank you for posting! I'm glad to hear your surgery was a success - so far so good on our end, she has been drool free for a week now and she didn't even need pain medication. Her swelling was quite minimal so I'm very thankful for that!