On Tuesday the 14th we took a trip down to CHOW for some follow up appts on Danny.
The first one was with Dental. He had only 3 teeth that had minimal tartar to be removed and then he got his teeth cleaned. What a trooper Danny was :) and cudos to the nurses for maintaining great dental hygiene....gold starts for having a great set of teeth for Lil Man. He wasn't too impressed with getting his teeth scraped but he recovered well. It was a great appt, just another cleaning in 6 months. He does he 2 more teeth that are loose but not loose enough to be pulled at this time.
The second was Danny's pre-op for the rod lengthening in Jan. This one was pretty easy, just vitals and look at the MRI images that were taken about a month ago. We talked about the procedure and if it was even needed at this time as his curve didn't move since the revision VEPTR surgery in August. I remembered one of the questions, when I was considering the VEPTR, was how did they know he needs to be grown? The answer I got was when the curve increased on the images. Well his curve is stable so why grow him out? I know "protocol" is to grow out every 6 months BUT if it's not needed then why do it? Danny's dysautomonia (a disorder of his body not reacting the way it is "suppose" to automatically) goes so out of control when he is put under anesthesia. So I left that appt very confused on what I should do and what were that right options for Danny.
Then it was break time.................Lunch at The Cheesecake Factory,.YUM ~ Life is good! I had all the comfort foods and then....of course CHEESECAKE. I mean how can one go to The Cheesecake Factory without eating a piece of cheesecake. I did share the Kaluha Coco cheesecake with the nurse because I was so full from the main course, so it wasn't too bad (with the weight watchers points, LOL).
Back to the hospital for our last appt with Palliative Care and Rehab. I couldn't wait to see them. These two Doctors get the WHOLE picture with Danny, not just a specialty. PLUS we haven't seen Dr Klingbiel in a long time as Danny was being seen by another Doctor in rehab that was also taking care of his baclofen pump. She is now gone, Danny's neuro is back taking care of the pump and we get to see Dr Klingbiel again, Wooooowhooooo! I LOVE these two Doctors, they make our stays in the hospital and the cares between all the specialist alot more bearable. I know they got my back and understand the whole quality vs quantity. I don't know what we would do without them in our corner. I informed them of the findings at the pre-op appt and BOTH of them are on the same page I am. PHEW! So I canceled Danny's surgery in Jan and I will have xrays of his spine in Feb when we are down there for other follow up appts to see if he'll need to be grown out this spring. I'm all for not putting him through surgeries IF they are not needed. The only disadvantage is that we were going to have an injection done in his hip to see if that helps with the pain Danny is having. They did increase Danny's baclofen pump ever so slightly in hopes to decrease his spacticity and spams and that will make his pain levels lower. Changing the pump is so easy, so why not try it, right. If it doesn't help then we know and can switch the pump back to it original settings. We'll see!
Unfortunately the seizure monster is back. Danny has been having alot of neuro issues lately and at times his oxygen levels even decreased.....NOT COOL! So you can bet that Danny just bought himself an EEG in the near future. We'll see when we can fit that in this Holiday season.
I got my Lab work and MRI results back last week. NOT so good :( BUT my eye exam went well, the MS has NOT attacked my eyes other then having the side effects of my headaches through my eyes, PHEW! All my labs were "off" but most of them are being blamed on having the IV treatment being the culprit of that. So I am going back in on Monday, for more labs to make sure I am back in "normal" limits as well as a more tests. The MRI I had done did show 3 new "hot spots" or lesions (1 in my right frontal lobe and 2 in my left frontal lobe making it a total of 7 now) so what I'm going through is indeed a full blown MS relapse, sigh. Then with being on the IV treatment to help with the relapse symptoms it did make my system feel even worse because it dropped my thyroid function more (which is already working shady), it increased my sugars (which I'm already at risk of being diabetic), and my blood pressures have been way HIGH. The headaches are coming from the lesions/soars forming in my brain. With me not improving after the "treatment" and the lesions not settling down (they glow when they are active on an MRI, hence the "hot spots" meaning they are active at that time. When they are not so bright they are not active.) after the treatment I've been up graded from relapse-remitting or remitting~progressive ~ which means that disease is taken hold and I'm not going back to "normal" after a relapse, I continue to deteriorate. SO........the decision was to switch my meds in hopes we can put this MS in REMISSION instead of the path it looks like I'm taking. With the change comes the risk, there is NO EASY answers with having a disease without a cure. You either let the disease kill you OR you could die trying. I have to give it every effort to make myself better! I am going to be going in to have a med port surgically implanted in my chest so I can start a medicine that will be given by infusion. BONUS is no more daily shots that bruise and sting like crazy. I will be going in once a month to the hospital to have the med done via my port, it should only take about 1 hour to give and then I have to stay another hour to make sure I don't have any immediate reaction. So that will be nice only 2 hours a month. This med has done wonders with shutting the symptoms down and not getting anymore lesions. I'm crossing my fingers it works. BUT it comes with added risk...one being infection from the port and the BIG one is the possibility of getting a brain infection that could be fatal or cause severe disability. No stress there, AH! The only good thing is that they are aware of it happening and they monitor you VERY closely. So I feel somewhat better about the situation, but I'm still alil edgy about it. I'm not sure yet of when the port will be done, but I have to wait to start the new med until I've been off the old one for a month. I stopped taking my meds as of yesterday, which is scarey in it's self with being in a relapse an now NOT being on any meds, I hope I don't any worse.
I am officially done with Christmas shopping AND wrapping. CHEERS! Bring on the Hohoho and the hot toddies. I'm ready! I'm still bummed about not being in Florida for the Holidays but I am looking forward to hanging out with Dan and the kids in our jammies playing with out new stuff :)
This week is full of events for me. I am going to work at Avrianna's school holiday store for a few hours tomorrow morning, then Tuesday we have Avrianna's Brownie Christmas party that was cancelled last weekend due to Blizzard Aiden, and then I have to help out and cook a dish for Avrianna's breakfast Christmas party in her class on Wednesday. Thursday starts Winter break so Avrianna will be home till Jan 3rd :) Not too mention all the medical crap between Danny and I. I have labs and possible port placement...Danny has his yearly physical with Dr Kasper. Then ahhhhhhhhh the holiday's, it's so weird knowing we don't have to go anywhere or do anything (as we used to run all over the place) and we can relax. I can't wait!
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Please have a Safe and Happy Holidays! From The Osero's
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