Last night (Sunday August 8th) about 11pm Karlee woke up in a fair bit of pain. We took her temperate and it came back at 37.4, but we still thought it would be a good idea to call the on-call Oncologist and see what he felt we should do. After a quick couple quick back and forth phone calls he decided, that since Karlee hadn't had enough to drink on Sunday that we should probably come in.
After a quick call to Grandma and getting everyone dressed we were on our way. Thankfully we had packed everything that evening so we would be ready to go Monday morning so we just had to grab some clothes for Ryley. We stopped and dropped of Ryley at Grandma's on the way up. He was a little upset as he really didn't understand what was going on. This whole experience is going to be just as hard on him as it is going to be on Karlee.
When we got to the hospital we were allowed to go directly to Unit 1 and were given a room immediately. The staff was once again incredible - the nurse was right there with us the whole time and the doctor was in within 15 minutes. It took a little while to get to emergency and get the IV line in, but we had her on fluids and codeine by 2:30. Hopefully she doesn't have too many serious pain issues as the codeine didn't taste good at all. She settled down pretty quickly after that and got some sleep. Jennifer and myself didn't have a great night as we both tried to sleep in an little single bed with a thin mattress. I got Jennifer's feet in my face and she got mine in hers as that seems to be the best way to sleep (or at least lay as I'm not sure if anyone slept much).
Monday morning Karlee was in a little pain again and had a bit of a fever, but they treated that with Tylenol. We also found out that their Tylenol doesn't taste the same as ours - $10 later at the hospital pharmacy and Karlee was happy.
We got to see a bunch of doctors today. We started out with the pediatric team from the Oncology unit to assess her general health, then the Oncologist, followed by both those teams together doing rounds. I was a little surprised to see that rounds are exactly like they appear on Grey's Anatomy. We then saw the Infectious Disease doctors to determine what risk Karlee was at due to the possible allergic reaction to one of the antibiotic families. We then briefly met the Social Worker on the unit and later in the day we met with her again. We also say the hematologist and the surgeons today.
So what does all this mean???
The infectious disease team determined that Karlee probably does not have a penicillin allergy and will use the standard (and most effective) antibiotic cocktail. They will monitor her the first time they need to give this to her, but they aren't too concerned.
The surgeons are going to put in a central line with a port Tuesday at some point. She is on the "Red List" which means she doesn't have a time booked, but if someone is running late, or is cancelled she will get in at that point. If she doesn't get in by a cancellation she will get in once the first OR is finished. The central line will make giving drugs and taking blood much easier. The port will allow Karlee to have nothing sticking out of her chest. There will be a small port under her skin which the clinic can access with a topical and a small incision. When she in not receiving treatment there will be a small bump under her skin. She will not have any issues with having a bath or going swimming.
The social worker was also very helpful. She talked to us about some of the things the unit could do to help Ryley. We also talked about some of the things we could do to assist him and some of the resources that are available to help. Hopefully we will be able to use the available resources to minimize the impact on our family. She also provided us with a book that we have to spend some time reading and learning about.
The Oncologist and his boss met with us, the social worker and one of the undergrad nurses. They went through what the plan is for treatment and all the possible side effects for the first 4 weeks. After the first 4 weeks we will have much more information about the leukemia and how she is responding to the treatment and that will allow us to determine the next 2.5 years of treatment. The first 4 weeks are going to be pretty intense, but if we end up with the best case scenario we will be in the hospital less time than we thought. She will be getting a combination of steroids, chemotherapy, injections in her muscles and injections in her spine. By day 4 of treatment she could be out of hospital, but it could be a little longer. This could mean they will be out by Friday or more likely Monday. Then it sounds like we will be back at the hospital once or probably twice a week until the end of the 4 weeks.
Later Grandma brought Ryley up to the hospital. He got to go to the zoo in the morning with Aunt Catherine, Everett and Oliver and then spent some time doing crafts with Grandma. He came up to the hospital and got to go to movie night at the hospital. Tonight was "The Tooth Fairy". Jennifer took him up there and let me spend a little time with Karlee. He enjoyed the Mom time and the movie and I think Karlee enjoyed walking around the unit and reading books with Dad. Karlee wants to go for a walk outside so bad, but they wont let her out of the unit.
Since I have been up since Sunday morning with only a few hours of sleep I should probably get some sleep.
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