Friday, June 27, 2014

Ronald McDonald House and Pre-surgical Appointments

 We got into the Ronald McDonald house we are staying at early Sunday evening. The flight went really well and we flew out of Milwaukee instead of Chicago, so that saved us a lot of time and stress! It is just over a two hour flight during which, my husband and my mother slept most of the time and I read a really good book! The only part of the flight that was difficult for me was the landing. It still hurts my neck to get jared around that much, so I will need to remember to wear my collar more on airplanes. Once we got our luggage we went and got a taxi to the Ronald McDonald house, which is about 30 minutes away from Laguardia (one of NYC's airports). It took a significant amount of time to check in, but once we did it was so wonderful! The people here are absolutely AMAZING and so kind. We have our own private room with: two double beds, a desk, a TV, a night stand, and a rocking chair, our own personal bathroom that even has a tube, and there is a community kitchen that comes with a fully stocked pantry and a fridge with left over dinners and other various odds and ends. You can also buy food and store it on individually labeled shelves in both a fridge and a dry goods shelf. A company, family, or organization brings in food every night for the residents to share with their families. One night there was sandwiches, another was pasta, and tonight is going to be chicken I believe! Girl scouts were here the other day baking cookies and cupcakes which was extremely sweet of them! We all love it here! It is so quite, clean, and everyone is so very kind! It is the perfect place to stay!

On Monday morning we went to the hospital for my pre-surgical testing. They just ask me a bunch of questions to make sure that I am healthy enough for surgery. I answered all her questions, filled out the paper work that I needed to, signed the consent forms, and had all my vitals checked. This all looked good, so they just need to draw blood. As some of you may know I had some difficulties getting that hospital to draw blood out of port when we were there for my surgery in December. It seems as if they had a meeting to discuss why this was such an issue, which they told me there were going to do, because it went very smoothly! They did the blood draw through my port with zero issues and it was quick, effective, and painless!

All the results of those results from my blood work were normal except for my potassium. We check my potassium every couple of months because one of the medications I am on to raise my blood pressure, Florinef (also called Fludrocortisone), can deplete potassium. Ideal potassium levels should be between about 3.7-5.2. On Monday during my pre-surgical appointment it was 3.2 and on Tuesday when they tested it my potassium level went down to 3.1. They then checked it again on Thursday and it had come up to 3.7 after doing three bags of IV potassium. I emailed my neurologist and he wants me to get my potassium blood work done again when I get home and then start on a prescription for potassium for two weeks then we will check my labs again.

I warned the nurse about my nausea and vomiting so she could take note of that and also asked her to make note to put some squishy pads under my knees, hips, and ribcages so that I did not get gigantic bruises after the surgery. They did end up doing this and it was wonderful!!!

After this we then walked a short ways to my appointment with my surgeon at the Chiari Institute. His nurse came in first and asked a whole bunch of question regarding my symptoms due to tethered cord. These questions regard the lower half of your body including: bowel and bladder function, the pelvic region, legs and feet. Some areas have pain, some do not work efficiently, some are numb or weak, and others still are just fatigued. We waited a little while and then my doctor came in. It was a much shorter appointment than last time because I had already seen him and had a neurological exam with him. He said he is hopeful that this surgery should help me greatly with the lower half of my body. It does not help everyone and there is a chance that I will not improve, but he said for my personal case he is hopeful that it will elevate some, if not all, of my lower body symptoms.

He said that the surgery would be about 3-4 hours long and I would not need to go to the ICU (intensive care unit) after the surgery. We estimated that I would be in the hospital about 3 days. After that I just couldn't have anything to eat or drink after 11 pm and had to wash my body with a surgical scrub.

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