Friday, May 31st (Day 1 of Chemo):
We get checked into our good ole' room 4413, get some fluids going and start chemo at 7:45 pm. It was a long night. Chemo finally ended at 1 am. This round she gets 2 drugs (1 runs for 2 hours plus a flush, then one for an half an hour and then a rescue drug for 4 hours) for a course of 5 days. Not to mention Zofran every six hours because this chemo drugs are very nauseating. It is a long process. It was a long night for mommy, Evalette sleep through most of it. The nurse and I didn't get along very well. I usually get along with everyone, but she and I had very different opinions on my daughter's care that night. She went and talked with the doctor and the doctor was fine with my way. I can't handle every 2 hours having Evalette's diaper changed. She needs her rest and so do I!!!
Saturday, June 1st and Sunday, June 2nd (Day 2 and 3 of Chemo):
Evalette was in a lot of pain. She had a lot of mouth sores around the inside of her lips, down her throat and such. She was in so much pain that she stopped eating. It was so sad. So on top of all the chemo and zofran, we added oxycodone to help her intense pain every six hours, and then an IV feed so that she wouldn't miss out on the nutrients she needs while she isn't eating. The IV feed runs for 12 hours at night. She also got a blood transfusion. I love it when she pinks back up. So many things. She didn't feel good at all. Lots of vomiting, nausea, and hurting. Mommy and Daddy rocked her most of the time. Also tested positive for common cold, so in isolation. No fun! Good news, she has begun to sleep through the night again. I wake up every time the nurse comes in, but she stays asleep. So happy about that!
Monday, June 3rd (4th day of Chemo):
This was a rough day. Evalette was not feeling well. Mommy was very tired. The chemo side effects were worsening everyday and so mommy declared it, Pajama Day. We rocked in the chair, watched Mulan on TV, ate cheesecake (Evalette played with it, but mommy enjoyed it), and didn't do much of anything. Evalette had a rough day sleeping and it seemed like every time I almost had her asleep or I was exposed while breastfeeding, someone would come in, even though there was a "do not disturb" sign on the door. A cleaning lady, a tech to restock the drawers, or someone to empty the medicine bin...things that could wait. I was a bit frustrated. It was a long day. So I made this sign...and planned on using the next day. I needed some privacy, some boundaries, some room to breathe. I appreciate all the doctors, nurses, and staff at the hospital, but sometimes I think that they forget that this is their job, but this is our LIFE. It was a bit of a downer day.
Tuesday, June 4th (5th day of Chemo):
Finally, the last day of chemo. Done with phase 2!!! Lots of vomiting, lots of baths, cuddles, rocking, and still on IV feed. Mouth sores starting to clear up and breast feeding once a day. Our wonderful friend, Mckenna, from Music Therapy stopped in. We love Mckenna. She is so good with Evalette. We will miss her when her internship is over in 4 weeks. Our music session really helped our day go a whole lot better.
Wednesday, June 5th (the waiting game):
Chemo is done, but since Evalette is a baby, she is considered high risk, she instead of going home, we get to stay at the hospital for count recovery. The chemo she just received is known for being horribly immunosuppressive. So the risk for infection is high. So they won't send us home, until her counts, which are zero, start trending up. They will stay zero for a while because the effects of the chemo will be in her body for a bit. So today, they started her on a shot to help her white blood cells start to regenerate. It isn't too bad of a shot, just a little one, but still I hate to have to have her have one more thing to be poked by. So is still on zofran and pain meds, due to the side effects of the chemo.
Also today, they put an NG tube down her nose and into her stomach, since her mouth sores have healed. Evalette still is not eating solids and only breast feeding about once a day, so this will feed her at night, and give her 75% of the nutrients she needs. It was quite the ordeal. During the placement, she kicked the nurse in the face. I couldn't blame her. It took forever and 4 nurses to do it. She was not a happy camper and neither was I. All this wore her out and she was exhausted.
Thursday, June 6th:
Nothing new. Evalettte was so mad when she woke up and had the tube in her nose and down her throat. She was pretty grumpy all day so I declared it "GIRL DAY". I painted our nails, we watched movies, read books, and relaxed. She started to eat more and we just hung out while she got used to her new tube.
Friday, June 7th:
She was a little happier and her appetite was a little better. I got some smiles out of her and had a boring day. It is hard when we are in isolation. There isn't much to do. She didn't take pain meds today and seemed to tolerate that well.
Saturday-Monday, June 8th-10th:
On Saturday, James and the boys came up and during Evalette's nap we went to the Discovery Museum. It was so fun and the boys can't wait to go back. Oh how Evalette and I have missed them.
Our wonderful friends, Bill and Karyn, Tyler and Erin, and Bryan and Alison got our family year passes to the Museum. Thank you guys. We are so excited to have something to do while Evalette is in the hospital!!
Daddy and Grandma Christensen spent Sunday with Evalette so mommy could have a break. It was nice to be with the boys, but hard to be home without James and Evalette. It is so hard to be separated.
As of today, we have been here for 10 days. This morning, her numbers were incredibly low, at a stand still, they called it. But they said when the shots kick in, her numbers will go up quick. I am hoping to be home, by Thursday or so, at least by this weekend. Evalette is bored and going home would be awesome for her. There isn't much to do at the hospital. She is restless and ansy, but doing well. She is eating much better, along they still have her on the NG tube. She isn't on any meds and besides 2 antibiotics (since her counts are so low). Tomorrow she is getting another blood transfusion and today she got platelets. I had started giving her her daily shot, since I will still have to do it when we get home. The shots continue until her counts are 1500. So for a while. Fun, fun!! We are praying we can go home soon!! And are so grateful that this nasty PHASE 2 is over.
Thanks for the prayers. It is the only way, we made it through!!!
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