I've never been a recipient of home treatment, nor have I known anyone who has been so I didn't really know what to expect. The company that handles my treatments is called IgG America and every week they call and ask me a million personal questions and schedule a delivery. The first delivery I got was a HUGE box sent via FedEx and included a ton a medical stuff, and IV pole, saline bags and my immunoglobulin. It honestly kind of freaked me out. I wasn't really sure what some of it even was or what to do with it all. I was especially concerned with how to keep it out of reach of my nosey toddler, Isabelle. The only direction I was given was to refrigerate my immunoglobulin and make sure to take it out the night before my treatment. So I hid it from Izzie and freaked out every time she opened to fridge.
When Saturday rolled around my nurse came to my house around 7:15am and I wasn't expecting her until 7:30-8:00am so I was a hot mess, lol. She started my IV and my saline, I took my pre-meds and tried to get comfortable. My first nurse's name was Maggie and she was very sweet and super efficient. She helped me fill out my paperwork and checked out the things that had been sent to me. When it was time to start my IVIG, she hooked it up to a portable, battery operated pump. It came in a little bag/purse thing and would allow me to be mobile during treatment. Which for me, was most beneficial because I had to pee at least twice an hour!! I guess that's what drinking tons of water and Gatorade will do to ya though.
Throughout the treatment, I played with Izzie, napped, watched TV and planned for school. I also had my temperature and blood pressure checked every hour. I'd like to say I was more productive, but the Benadryl that I take makes me very tired and the IVIG gives me slight body aches. Aaron stayed home the whole time except to take Isabelle for a walk. When they did go out for a walk, I was a little sad because I wanted to go to... but couldn't. I just had to think how grateful I was that I didn't have to get a sitter for her all day, or sit in a hospital bed either.
My treatment ended around 5:30pm and Maggie asked me a few follow-up questions, took out my IV and she was out the door. So much better than getting out of the hospital at 8pm and still having to drive home. Maggie was very talkative and was so wonderful with Isabelle and with my dog, Sophie. She won't be my permanent nurse, but she is my alternate. So I will be seeing her again! She followed up with me the next day, making sure I hadn't gotten any headaches and that I felt okay which was super nice.
At my second treatment I had a nurse named Bernadette or Bernie as she likes to be called. She was also an awesome person who really got along well with my family! She had never had a NAIT patient before so she was extra cautions with everything that she was doing and made sure to double check the protocols set for me. She was also very talkative but stayed a little bit more out of the way in my tiny little house. We played with Izzie, we watched TV and I had my temperature and blood pressure checked every hour again. Isabelle was absolutely terrified of the blood pressure cuff and freaked out every time Bernie went to check it. She cried and screamed at her because she thought she was hurting me. It was really sad but super sweet that she wanted to protect me. Bernie let Isabelle push the button on the cuff and after a few times of that she was less concerned.
I had a lot of time to lay around again which honestly was really nice considering how tired I've been. My treatment ended around 5:30pm again and Bernie took my IV out, filled out some paperwork with me and was on her way!
Overall my experiences both times were very pleasant and much nicer than going to the hospital. I still had slight headaches and general body aches but overall my side effects are minimal. I'm always really exhausted after treatment and usually for the next 2 days afterwards as well. I've been trying to fight through it and still go out and live my life but it's hard. If I stop drinking water and Gatorade in the 48 hours after treatment it gets pretty bad. So I've learned to keep up my fluids to keep away the headaches.
One thing I was spoiled with at the hospital was that I was always given an ultrasound to get the baby's heartbeat. Obviously at home I don't have an ultrasound machine so I use my Doppler to get a heartbeat as often as I can. I am only barely feeling the baby move and if I can't find the heartbeat with my Doppler, I start to freak out. Terrible thoughts go through my head and I wonder if the baby is okay. Many NAIT babies die in utero from strokes and brain bleeds and doctors don't always know why some do and some don't. They say it's spontaneous... and that's a scary word for a mom to hear. That your baby could spontaneously have a horrific complication. So for the past 2-3 weeks, I've been a bit of mess. Worrying constantly, praying and hoping that my baby is healthy and that I'm not causing him/her any pain.
My husband is amazing and he knew that I was a wreck about the baby and also that I'm super nosey about it's gender, so he scheduled a 3D sonogram for me on my birthday. One of the best things about this sonogram is that Izzie was allowed to come too and she FREAKED OUT! She was so happy and kept pointing at my belly and then pointing at the screen, saying "OHHHH, Ba-by!!" It's a memory that Aaron and I will never forget and I am so indescribably happy to have been able to see my sweet little baby and be reassured that he/she is doing well in there.
For now my treatments will stay at home on either Saturdays or Sundays in September and then all Sundays in October. While I know that this will never be easy, I am very grateful that it has become easier than before. I know I can do it and I'm so thankful for all of the support my family's been given. Thanks for reading and thank you for your support!
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