Saturday 06 April 2013
Waking up at 6am after only a few hours sleep I was surprisingly alert, so I had a shower because there really wasn't anything else to do. After breakfast the nurse wanted to start my steroid infusion earlier so I could hopefully sleep better that night. About 20 minutes into my infusion there was a knock at the door and my favourite surgeon was standing there asking if he could come in. What a nice surprise! I couldn't go far with my little IV friend attached so he came over for a hug and stayed a short while for a chat to check on how I was going. When he left I told the nurse that my arm was really starting to hurt - my cannula had tissued (most likely from the position it was placed) so they had to stop my infusion and call the cannulation nurse to re-site my cannula.
When the cannulation nurse arrived she had a look at my arms and chose a more appropriate site on my left arm. She even gave me some local anaesthetic before putting the cannula in which was nice. It didn't take long before my new cannula was in and the old one was out. This time the most uncomfortable part was the dressing having to come off the old one! Now that I had a brand new drug portal my infusion could start again - welcome back metallic taste in my mouth, not even mentos or tic tacs could help. Not long after my infusion had been restarted I had another visitor from theatre checking up on me. It's very nice to know that I do work with some very lovely people. Dr Saines dropped in during his ward round to see how I was going and how my symptoms were and got me to do a walk to the door and back, my balanced had improved. At this point there wasn't any huge change but it is only early days of treatment. The rest of the day consisted of the usual change of staff, OB's and BSL's BP considerably low but not concerning as I haven't been doing a great deal and BSL high (the steroids wreak havoc with you blood sugar). I really do think I was the easiest and most self sufficient patient on the ward. That night I did sleep better getting about 5.5hours solid sleep.
Sunday 07 April 2013
Today started out like yesterday, woke early showered and got ready for breakfast and my first set of OB's - BP still low but feeling fine. After breakfast I had a lovely visit from another work colleague and she came bearing a beautiful card and some lovely sweet treats. She was soon followed by the nurse with my last steroid infusion and the last day I would have that terrible metallic taste in my mouth. Dr Saines came in when the infusion was running and he had another chat with me regarding my symptoms and today I could tell him that the pins and needles and tingling in my feet had improved a lot. Luke came in after Dr Saines had already been, by this time it was almost lunch time so he went down to the Gown and Glove to get something to eat and brought it back up. My lunch arrived and we both ate together.
Today was the onslaught of family visits - which wasn't a bad thing. First I had my grandparents, mum and sister come at around 1.30pm and they left at about 4.00pm. Next was Lukes dad and his partner at about 5.00pm. Luke went with his dad to have dinner at about 7.30pm which left me alone for the remainder of the evening. I will admit that as lovely as it was having family visit and show their support it left me feeling so overwhelmed and exhausted from trying to keep up a happy facade I had a sigh of relief when I was alone. I slept so well that night and I think it was because of being so mentally, emotionally and physically drained.
Monday 08 April 2013
I woke up at the usual early time, continued my routine of showering and getting ready for breakfast only today I packed my stuff up ready to go home. Today I was to have my first infusion of Tysabri - the drug for my MS. The infusion started after breakfast and the nurse explained to me about the medication, side effects and that I was to have OB's every 10 minutes and to let her know if I had any changes in symptoms. I did forget to mention that I did have to have a blood test when I was admitted to test for JC virus because if I have been exposed to to JC virus there is the one bad side effect of Tysabri which is possible brain infection. I will have to have this blood test every 12 months. The only side effect I had was a mild itchy rash that was relieved with some Phenergan.
I had some more work colleague visitors today one person bearing a lovely care bear for me to hug when I'm feeling down and the other some more lovely sweet treats and beautiful smelling soap. Dr Saines soon followed them and asked how my symptoms were going made me walk to the door and back and says "You should be right to go home tomorrow." Well that's great, I had better unpack my PJ's then. He wanted a Physio to see me today to help get a baseline of where I'm at physically. The Physio came in after lunch and we went and did some exercises and tests, she was very lovely and supportive. Seeing as I wasn't going home I thought I would take a walk down to the Pre-op area and fill in some paperwork for leave while I was in hospital. It was nice to get out of the ward and walk around for a bit and to see a few other people.
Tuesday 09 April 2013
Today is Discharge day! How exciting! I was well and truly ready to go home, especially as today was mine and Lukes 10 year anniversary of being together. I was ready and packed (again) before breakfast was there. The night duty staff took out my cannula so I was free of my attachment that had been my friend and foe for the last 4 days. Now there was only a few appointments to make, my next Tysabri infusion on the 8th of May and my next Neurologist appointment on the 18th of June. Discharge paperwork to be completed and then I was a free woman when Luke and his mum arrived to take me home. Walking out of the ward was a wonderful feeling and having this as my first ever hospital stay, given the circumstances, it was a positive experience.
I would like to mention that every single nurse be RN, EN or AIN, allied health staff member, orderly, food staff members and cleaners were amazing.