Surgery for my girl and a little venting…

Raven just got taken back into surgery. She is going to have the infection on her tush lanced. It went from bad to better to way worse, and now she has three spots that need to be drained. This last week has been really tough. She’s been in so much pain and it’s been so hard on us to watch her scream and cry and be so uncomfortable. The doctor put her on morphine every two hours and it really helped, but she was still in intense pain every time we had to change her diaper or move her. The last couple of days she hasn’t had to have the morphine round the clock, but she’s had to have it three or four times a day as needed which has been better.

Yesterday was a bit frustrating for us. Erik stayed the night with her Sunday night and there was a new nurse with Raven that night. Erik woke up around 12:30 to change her diaper and then went to sleep, but when he woke up in the morning, Raven was covered in poop (diarrhea) and pee. He said it looked like she had been laying in it a while and that was just unacceptable. She was getting blood and platelets all night so the nurse was in and out of the room plenty of times. Enough to definitely check to see if she needed a diaper change or at least smell that she had pooped and at least wake Erik up. Most of the nurses will just change her in the middle of the night if we’re asleep and I can understand not wanting to change someone else’s kid’s diaper, but we were just mad because she said nothing and did nothing. It wouldn’t have even been a big deal except for the fact that she has that infection on her butt and since she’s been neutropenic and susceptible to even more infection we don’t want anything to make it worse. Needless to say, we were pretty upset about it.

The day didn’t get much better when we got another new nurse. We actually had her yesterday and the day before. The thing I was most upset about with her was the fact that she knew Raven was in so much pain yet seemed to have so little compassion for her. She put on the “I care” face, but kept doing things that hurt her like touching the infection site and moving her around more than necessary to do vitals. I’m not a violent person ever  but I’m telling you what, more than once yesterday I had visions of smacking her. I finally asked her not to touch her any more and then called in the charge nurse to complain. You should have seen her face when I asked for the charge nurse. She kept asking me why I needed the charge nurse and even though I wanted to give her a piece of my mind, I just calmly said I had a few issues and returned to facebook. I was trying so hard to be polite to her but I finally couldn’t take it and just stopped talking to her.

Yesterday was probably one of my most frustrated days here just because I felt like the new nurses were disregarding Raven’s infection and how she felt. I try really hard to be very nice to everyone, but when you mess with my family or kids I get pissed. I seriously hope we don’t have the same nurse from yesterday when I go upstairs because I will ask for another person.

Back to the surgery though… The surgeon is going to make some incisions to drain any puss that may be under the skin and then will put a drain in if needed. Hopefully this will relieve her pain and help her heal much quicker. I also learned today that an open wound would be better than keeping it closed because no new infection can enter once it’s open. When it’s closed it’s a breeding ground for the bacteria so it’s good to have it opened. I’m hoping my baby girl can get some much needed relief soon and that she can be healed very soon.

Today she was supposed to start day 29 of her delayed intensification, but because of everything going on, she will not start until her counts recover and we are out of this a little bit. I’m guessing it will be probably close to two weeks before she’ll start up again. Hopefully nothing eventful happens once that starts because once she starts day 29 there’s less than a month before she goes into long term maintenance. I asked the nurse about when she’ll be done with treatment and she said March 2014. I was curious if it could go longer than that because she’s had so many set backs, but she told me that the date is set by the when she entered into interim maintenance. Apparently, treatment goes two years from that date so no matter what Raven will stop treatment in March 2014. I’m glad we have an end date. I know it’s far away, but just knowing there’s a point where we won’t have to do this any more makes it better. I’m still taking it one day at a time, but whenever things get tough like they were yesterday I think March 2014 and even though it’s far away I realize it will be here before I know it and then one day all of this will be just a bad memory.

Hospital stay #13

Yesterday morning, I woke up to a pretty miserable little girl. She’s been cranky for the last week or so because of the steroids and at first, I thought she was still cranky just from coming off of them. Then I noticed the thermometer on the ottoman and realized that Erik must have taken her temperature before he left for work. I felt her forehead and she was hot so I took her temperature. She was 99.3. I got a little panicked, so I took it again and it was just above that. I decided to wait half an hour and see what happened. I took it again and she was at 100. I started getting a sinking feeling in my stomach and just had a feeling we’d be in the ER by the end of the day, but I still hoped for the best. I called her doctor’s office and talked to one of the nurses. She told me to just keep and eye out for her temperature going up and that if it did we’d need to come in immediately. While I was on the phone with her, Raven fell asleep so I put her down for a nap and started cleaning the house. About an hour and a half later, she woke up and when I went to change her diaper and clothes, I noticed she had what looked like a terrible bug bite on her little tush and she was shaking in pain. I immediately started getting worried and called my mom to pick us up and take us to the ER.

We got here in the afternoon and they started her up on antibiotics. The ER doctor came in and told me it was cellulitis and that she’d need to be admitted. Her heart was racing because her pain kept getting worse and her temperature was getting higher, so I called the nurse in and she gave her tylenol and morphine for the pain. After about four hours here, her temperature started going back to normal which was good. Erik came to see us after work and the four of us hung out together in the ER while we waited for a room to open upstairs. Finally, around 11, we got a room.

Raven is now on two different antibiotics and she is super miserable. She’s literally shaking in pain if she’s moved too much and the only way she’s comfortable is laying on her belly or her side. She’s pretty much been sleeping since 8pm. She’s waking up every once in a while, but for the most part just sleeping. She’s also signed a few times that she wants to eat, but when I bring her food she starts screaming. I feel awful because there’s nothing much I can do to help her out and it sucks to see her so miserable. I spoke with the nurse and her oncologist and they say she will be here for a little while. Her ANC is at zero which means she’s super neutropenic and susceptible to any kind of germ. The doctor is also giving her neupogen to stimulate her white blood cell count so she can fight this infection. The hopes are that it will make her heal much faster than if she didn’t get it. That’s what I’m hoping anyway. My fingers are crossed that we won’t be here too long.