Home sweet home!

Hi all, I finally made it back home! It was a long day of travel on Christmas Eve, but I am very happy to be home. All bumps make my head and neck really hurt, so car rides and plane rides are pretty painful. The worst part of the day was when the plane landed, that was not fun at all! We finally made it back to my in-laws at about 12:30 in the morning on Christmas morning. We had a nice relaxing day on Christmas and just hung out for most of the day. My (almost) father-in-law always makes chicken kiev on Christmas day which is super tasty!!!

Sadly I am not feeling well at all, however. My pain and stiffness in my head and neck are under control with medications. I am still taking the muscle relaxers every six hours and will be for quite a while. The stiffness will persist for a couple of months probably and I tend to not move my head at all very often. In the long run I will permanently loose about 30% of my range of motion in my neck, but we are not sure how noticeable this will be to me because my EDS (connective tissue disorder) makes the rest of the joints in my neck hyper-extendable so they may compensate. There is a very small chance that I may need to get joints lower in my neck, or even spine, fused later from instabilities due to the EDS, but Dr. Rekate said he has only seen this once in the 140+ fusions he has done.

I am still taking a prescription pain medication. It is taken every 4-6 hours as needed and you can take 1 or 2 pills at a time. I have been starting to only take 1 pill every 6 hours instead of 2 every 4 hours, so this is a good sign. I normally am able to wean myself off of pain killer relatively quickly. My guess is it will still be a good 2 weeks before I am weaned off of them and then I usually take them on an as needed basis for school or work for another couple of months.

Here is what my scar looks like now. All of the steristrips have fallen off so now we just have to keep it clean and dry. I caved today and took a shower and washed my hair, so I feel much better! I don't have to do anything special with it, just watch it and make sure it stays clean and dry.

The crunchy looking stuff at the top of the incision is just a scab that will fall off eventually. I only have glue and dissolvable stitches, so you can't see any stitches in this photo. It goes down further beneath the hair line than my previous incision did, but it does not go up as high as the one from last year did. You can see above the incision my scar from the previous surgery, which is the pale white line that curves towards the right.

My nurse came today and accessed my port. I want to learn to do it myself still, but I need more range of motion in my neck before I can do it myself. She is wonderful and it is hurting less and less to put the needle in as my skin is becoming more used to it. We decided to use a larger needle than we have been this time. In the hospital they used a 1 inch long 19 gage needle. The gage is indicative of how wide the opening of the end of the needle is and, counter intuitively, the larger the gage the smaller the needle. We had been using a 3/4 inch 22 gage needle normally, but decided to use a 1 inch long 20 gage needle. This is slightly smaller than the one at the hospital, but is what my home delivery company has. The reason we decided to use this larger needle is we found that the IV goes quicker that way. My neurologist prescribed the IV to go at a rate of 500-333 ml/hr, but we got lines that at the fastest go 250 ml/hr. With the larger needle we can turn the dial past the end setting of 250 ml/hr and get the infusion to go at up to 500 ml/hr. I also got a delivery from my infusion supply company, so now we have plenty of supplies! We ordered a bunch before my deductible starts over on January 1st. I was completely out of IV bags, so this was a much needed delivery!

My heart rate has been very high and I have been extremely dizzy yesterday and today. We are not exactly sure why, but we think it is because my body is trying to cope with the stress from the surgery and from traveling. My BP has also been eratic and my temperature is slightly elevated. It is nothing to be too concerned over, but for sure something we need to watch. My heart rate did come down about 10 beats/minute after running a liter of IV saline, so we will do another liter tomorrow in hopes that it helps keep me more stable. I will update later with how I am doing.

Oh and I called my neurologists office this morning because he still has not responded to my email from the other day and they said he is out of the office until Monday, so I will not hear back from him until next week. Please send prayers and well wishes that I start to feel better again!