Home from the hospital!!!

We are home!!!!

I have been pretty out of it for the past couple of days, but am feeling much more "with it" it today.

Thursday we got to the hospital at 5:30 in the morning. They called my name and I went and got my vitals checked then went and sat for a little bit longer. The nurse called me back and even though we had been told that I could only have 1 person come back with me to the pre-surgical room my mom, my fiance, and my future mother-in-law were all able to come back with me. The nurse wasn't very kind and started an IV even though I didn't want one with my port... well she wasn't going to do anything until I convinced her to do fluids for me before I passed out! She did them very quickly for me after I told her that. Then I met with the anesthesiologist and discussed my concerns about nausea and vomiting with him. He ordered a few different IV meds to be given during the surgery. He also ordered an oral IV med for before the surgery that was supposed to last for 48 hours. I had never had this before and it for sure seemed to help a lot!

 After this the two surgeons (neurosurgeon and spinal surgeon) came back to talk to me and my family. They were both very kind and explained again what they were going to do with the surgery. The spinal surgeon, Dr. Insinga, I had never met before that morning, but he was incredibly nice!!!! He felt like everything looked great judging by my scans and that they would not need to do a hip or rib graft to take any extra bone.

This is when I got wheeled into the operating room. It took quite a while in there, but it was kind of nice because I got to meet all of the surgical staff. We had a little bit of confusion on the orders the doctor had written so we wanted to clear it up so I could give consent before being put to sleep. Dr. Rekate had written revision of posterior fossa decompression (brain surgery from last year), but we hadn't talked about me need that only the spinal fusion. It turns out that because they went through the same incision and were in the same area of my brain/spine that they had gone into last year it is considered a revision of the last surgery in addition to the new fusion. Once we got this issue cleared up I got put to sleep at about 8:15.

The neurosurgeon (Dr. Rekate) came out at about 12:45 to talk to my family and said that from his end everything looked great. The spinal surgeon was still working hard to get my fusion stabilized and screwed in place. The spinal doctor did not come out until about 4:00. The previous neurosurgeon who did my decompression last year in Chicago did not touch my first cervical vertebrae. This was not good because I needed this space to get more room for the Chiari compression which is in the back of the brain. The good news was that they were able to remove this C1 (first cervical vertebrae) and use it for more boney material that they needed for getting the fusion to set in well. Both doctors said that I definitely made them work very hard to achieve the results they needed and wanted. The fact that I had C1 still in there made it more difficult for the spinal surgeon and Dr. Rekate had more difficulty getting spine aligned correctly than he thought he would. They used electrodes and various other monitors to monitor my sensory and motor pathways that run through my body. These pathways all go through the brain stem, where my compression was, but we did not know how badly effected they were by the brain stem compression until the surgeons went in there. Because of this Dr. Rekate said my balance, coordination, posture, and muscle strength in my extremities should all get much better. He said he was extremely surprised at how drastically my strength came back in my arms and legs once they moved my spine and relieved the compression on brain stem. I have never complained of weakness in my arms or legs and no one has noticed it, but apparently it was extremely significant, so hopefully with time I will notice more strength in my arms and legs.

I was supposed to go back to the recovery room over night, which was not ideal because family can't stay and there are no rooms only curtains. Thankfully my neurosurgeon said he absolutely did not want me to go there and wanted me to go straight to the neurological intensive care unit (neuro ICU). In the Neuro ICU the first hour or two were extremely rough! I did not have a pump that has a pain killer 7 times stronger than morphine that I was supposed to have. I was not crying because I was in too much pain to do so, but I remember just saying one word at a time and saying ouch all the time! My mom and my brother (who had driven in from the army base out of town where he is stationed at) came back at this point and I was very happy to have my mom's hand to squeeze! After an hour or so of this we finally got the pain pump started and they gave me a large dose to start with, so that really took the edge off of my pain. I was sleeping for about an hour at a time and would wake up every so often to push the button, but was feeling ok. About 12:30 in the morning they took my urinary catheter out as well as a line in my wrist that is called an arterial line. The urinary catheter did not hurt like it did with my last surgery so I was thankful of that! This was at least two less lines that I was now hooked up to. I got up at about 4:00 and 8:15 in the morning to use the restroom, so this was a very good sign!

The next morning I was still feeling pretty well and at this point was managing my pain quite well.  The night nurse was not doing very well managing my meds. I was still using the "magic button" as I like to call on an as needed basis, but not as often as they thought I would. For some reason they kept trying to tell me that they gave me my medication to lower my heart rate during surgery, which makes no sense at all! They gave me a medication to lower my heart rate, but not MY medication that my body is used to. It took me until the next day (Friday) to convince them of this and I finally found a physicians assistant (PA) that was fantastic!!! She told me to just take my medication from home and not listen to them. Of course now my heart rate is all messed up because my medication time table is off. This was annoying to deal with, but at least we figured it out now! The same thing happened with one of my medications for low blood pressure called Midodrine. It says I am supposed to take it 3x a day, but I need it as soon as I wake up and then every 4 hours, not every 8 hours like the hospital wanted. They could not seem to get this through their heads! The same PA who had helped me that morning with my other medications and she told me to take it since I am at risk for fainting without it. Again she said this was ridiculous and let her know any other issues with my medications.

The one thing that was really bothering me was nausea still. I got phenegran, which is a anti-nausea medication that I use at home as well, so we know it works. Then I got another IV medication call Reglan which helped drastically with the nausea. After a while I got nauseated again, so we decided to try something different. I can't remember what the medication was called, but they injected it into the muscle in my arm. This in combination with my Phenergan and the pill I had taken before my surgery kept me from vomiting at all! I had also gotten two shots (once a day) in my stomach of heparin, which is a blood thinner. This hardly hurt at all and was just used to insure that I did not develop a blood clot since I was more sedentary in the hospital than my body is used to.

I also have pressure sores on my knees, hips and rib cage as well as a couple of spots on my head. They are just really sore red spots from how I was positioned for so long during the 6.5 hour plus surgery. The ones on my knees are gone and do not hurt anymore, so now it is just the one on my right hip and left rib cage right under my breast that still hurt a little bit. The nurses say this shouldn't last more than a week, however.

After that I finally got moved out of the ICU and over into a regular room. Once we got there the central line nurse came by and finally agreed to take out my two peripheral IVs in my hand and elbow and access my port. This was so nice because I kept setting off the alarms when I would bend my arm or kink the tubing. I was ready to be back to how I am used to with just my port accessed! It took a little longer to the needle in because the nurse wasn't as experienced, but we got it all okey dokey. The issue again at this point was that I was not supposed to leave the hospital with my port accessed. Again the magical PA came in and saved the day! She clarified with me that I needed it between now and when I go home, and I said yes I absolutely do, so she over rode whoever told her no and let me leave with it accessed so all is well with that. We also got some neat little caps that cover the the ports on the line coming out of my port. They keep everything sterile when not in use and are very handy to have. I will have to talk to my home health care supply company about getting a hold of more of these because they are very useful!

After this I was doing very well. I had weaned off of the PCA (pain medicine) pump overnight and was no longer using it. This was the first step in my going home! I needed to switch to oral pain medications and muscle relaxers at this point, but overall I was still doing very well. The physical therapy people came for the second time this morning to take me for a walk around the hospital again and cleared me from a PT standpoint to go home. I had done just fine yesterday, but they need to check on you everyday. I walked a lap and a half around the neurological unit and went up and down five steps with no issues. The PA that we love then came in again and said I looked great. She paged Dr. Rekate to come in and speak with me. He came a few hours later and was astounded on how well I was doing! He said he has never had a patient who had this surgery who was ready to go home within less than 48 hours. He was sad to see me go because he said I really brightened up the ward! That was kind of him and he was a very sweet man! He cleared me to go home at about 11 a.m., but by the time we made it through all of the discharge paperwork, the nurse changeover, and the final vital checks and what not we ended up leaving at about 3:30 in the afternoon. 

I am now at home and will update again probably tomorrow or the next day with how I am doing and what all is going on with my home care, but for now this is very long! I love you all, thank you so much for all of the prayers and well wishes!