When we got to the hospital I was really excited to get a labor and delivery room instead of a triage room. The bed was more comfortable and we actually had a really nice view of the harbor. Our appointment was at 9am again but by the time everything actually got started and my IVIG prescription was filled and ready it was about 11am. The new protocol for my treatment went down from 180 to 100 which meant the treatment should take about 8 hours. They also decided to give me half of a saline IV before the treatment and the other half after, which would add another hour onto the treatment. I was really nervous about my IV, but thank goodness, I got a Technician to do my IV this time and she was AWESOME! She found a vein, put it in and I barely knew the difference. I asked them to put in my chart that I would rather have a Technician every time since I had so much trouble with it during the first treatment.
During the treatment, I felt pretty good... just tired. I continued to take in fluids and Aaron was really good at giving me a new bottle of water whenever I finished the previous one. We watched TV, played some games and just talked. My awesome bestest friend, Danielle had sent me the sweetest gift all the way from Alabama---a Disney princess coloring book, crayons and chocolate. So of course we colored, which was surprisingly relaxing. We were also able to hear the baby's heartbeat again and it was around 150... same as last time! Talk about making a girl smile! It was a nice reminder that there was a little tiny life that I was protecting and it really gave me an amazing burst of energy and encouragement.
Also during the treatments LOTS of nurses and doctors came in to see me. I kind of felt like some kind of exhibit because most of the people had never treated a NAIT patient and were coming in to learn about the protocols. They were all very nice and eager to learn but mostly talked about me and not to me. I watch a lot of Grey's Anatomy and I was kind of feeling like the patients on the show when all of that was going on. It was sometimes frustrating because they often didn't know what was going on and had to leave the room to ask, but I was excited that so many new people were able to learn about a condition that is very rare.
Towards the end of the treatment I had started to get a slight headache again but my previous nurse's shifts had ended and a new shift of nurses had come on. So when I told my new nurse that I had a headache, she was unsure of what to do and really hadn't had any time to get up-to-date on my case. She went out to get another nurse who had to get approval from the doctor and by the time I did receive Tylenol, it was about an hour later and my headache had already gotten worse.
At the end of the treatment everyone was confused about whether or not I was supposed to get the rest of my IV fluids and if my IV should come out so instead of it taking about 30 minutes to get the fluids and get out of there, it took about an hour and a half. By the time I was given my discharge papers, I was extremely frustrated because we had been there since 8:45am and it was now 9:45pm. When we got in the car, I broke down and cried my eyes out. I was exhausted and upset that we had left Isabelle this morning when she was sleeping and realized she would probably be asleep when we finally got home too. It might seem silly, but the thought of missing out on seeing my baby girl all day just broke me down. Because my little lady is a bit crazy, she was awake when I got home, and she was so excited to see me. It filled me up and made me indescribably happy.
The next day, my headache was there but it wasn't so bad. I continued to take in fluids but was told to be careful of taking too much Tylenol so I held off as long as I could before I felt like I needed it. Aaron had previously planned a trip to the Poconos with a group of his friends for that weekend, so once I gave him the all clear he left for the trip. I really felt like I was okay and was fine with him leaving but after I woke up from a nap with Isabelle, my head was killing me and it was really hard to function. My mom had come over to help take care of Isabelle and of course me, but she also had to go to work. I tried to do what I could to keep myself functioning for Isabelle's sake but it was hard. I felt such guilt when she wanted to play and I just wasn't myself. We went to bed but I was unable to sleep well because of the headache so when Izzie woke up at 7:30am, I literally did not know how I would get through the day. I texted Aaron just to let him know I was feeling so awful and he called his mom and bless her heart, she came to my rescue. She watched Isabelle so I could try to sleep some more and I was so grateful for those few extra hours. Once I was awake, my head was still pounding and not much was helping but Aaron's mom came back later to watch Izzie and bring me dinner. She was definitely my hero that day and I'm sure Isabelle's too.
Finally by Saturday, I had started to feel better. I was still exhausted but functioning. My Aunt Donna was in town from Washington state so my family all went to my grandma's to hang out and I got a little bit of a break while we were there too. Aaron ended up coming home early on Sunday and I was so excited. Of course I was excited to see him, but I was even more excited to take a nap!
After talking to both Dr. Vaught and Dr. Blakemore, they decided we should try to switch brands of IVIG. Switch brands? Who even knew there were different brands of blood? And what is the difference? I was just told that there were less side effects with some brands than with others and that they thought it would be the best choice. So, next time.... New brand and HOPEFULLY no side effects. If everything works out with the new brand, I may be able to get home treatments too!! Fingers crossed, and thanks for reading. We really appreciate everyone's support!
No comments:
Post a Comment