This week has had it's ups and downs, but over all it's been pretty good with just 3 exceptions.
The first had to do with some missed prescriptions. When I had my labs drawn last week, my ANC had dropped below 100. At this low level, my protocol would allow me (and suggest) that I go on Neupogen injections to raise my white cell count. This was fine, and I was prepared to have Mike or myself give me a shot for 6 days to bring up my counts. The first problem came because I was due to start on Monday, which was Memorial day, and therefor the oncology staff wasn't going to be there. This meant I had to go to Beverly Hospital to a regular patient floor and have a nurse there give me the first injection (the first one they observe you for an allergic reaction). This was frustrating for two reasons - 1: I had to drive to Beverly that morning and sit there when I could have been doing other things at the house while the baby was still at Children's. And 2: you never know what people have on a patient floor, so I had to be careful not to touch anything and wear a mask (which I just find annoying). But it was fine, and I got my shot, and no reactions, so I went on my way to pick up my prescriptions at CVS. Now, in reality, I should have known that I was going to have an issue because when we got Neupogen for the baby the people at Children's told us that Blue Cross only paid for it when it was mail ordered from a certain company in Florida. However, I didn't make the connection, and expected to pick it up at CVS along with the antibiotic that I was prescribed. Not only did they not have anything in the system, but since it was a holiday it took forever to try and get the prescriptions from the doctor on call (who wasn't my doctor). So after a lot of phone calls, and some searching, I was told it would be $300 to get one dose from CVS because BCBS doesn't cover it except for mail order (this is where the duh part came in). So now I'm screwed, and I have to drive into Boston to stay there overnight with Saoirse, and have no way to get my injection. So, I found out my dose and took a vile and syringe of the baby's from the house, and had it with me for Tuesday morning at the hospital. After calling the doctor's office in the morning and trying to get them to set everything up for me, I had the nurse at Children's inject me. So I was hoping I would have my meds delivered on Wednesday morning, because the doctor said the order was put in on Tuesday and I know the company overnights, but I called them and they said the order hadn't gone through yet and they were waiting for approval from the insurance. To make a long and frustrating story short, I spent all day making phone calls to them and the insurance company, only to find out that it took all day for them to process it, and that I would not get it until Friday morning. Needless to say, I'd now taken 3 of the baby's vials, and was so frustrated I couldn't talk about it any more. I did finally get the meds, but they ordered me pre-filled syringes which cost me more than if they had ordered me vials, and means that I can't replace the ones I used of Saoirse's so I have to order more for her now. Just a hugely frustrating ordeal that I didn't need to have with everything that's going on. For the next round I'll be sure that I get the right thing on time.
Frustration number two: the mysterious rash. Saoirse has her new Broviac central line, and they changed the dressing before we left the hospital. However, she managed to develop a bit of a rash around the dressing by wednesday night. We talked to the Jimmy fund, and they recommended getting some Benadryl and seeing if the rash improved before bringing her in (we suspect she's having an allergic reaction to either the dressing tegaderm itself, or the cleaning solution used at the dressing change). During the day on Thursday, she had managed to pull off half of the tegaderm, and now the dressing needed to be changed again so she didn't get an infection. So I had to call the visiting nurse to squeeze us in on Friday morning, go to CVS and buy children's Benadryl, then call the clinic to find out the dose because for children under 4 they tell you not to use it. Needless to say, it was a crazy morning of phone calls and nurses and crying and confusion. But the rash is going away, and her dressing is staying in place, and that's better.
Now for the big one. So my parents took Saoirse overnight Friday so that we could get a much needed night of uninterrupted sleep. Everything was going great. We dropped her off, she was playing and having fun, we left, went to dinner, came home and planned on going to bed early. I was a bit achy at dinner and remembered that Neupogen can cause some bone pain when it starts to activate the white cell production. I figured I'd take a nice hot bath to sooth the achyness, and then go to bed feeling better. The bath helped, and I was fine going to bed. At 2 am all hell broke loose. I woke up in excruciating pain, and couldn't even move. My pelvis was throbbing, and I couldn't find a position that didn't put pressure on the bones. I had Mike running all over the house finding Tylenol and heating pads and helping me up and down. It was horrible. The pain was worse than when I had my C-section. It felt like my bone marrow biopsy, except instead of one second of the pain, it was constant. It was horrible. I managed to go in and out of sleep until about 5:30 when I just couldn't take it any more. At 6 we called the doctor's office, and had Dr. Bering paged. I explained to her what was going on and she said it should pass in three days or so, and that I could take Vicoden or Oxycodone if Tylenol and Advil didn't work. I never have Advil so I asked if I could try Ibuprofen first, and she said that I could because my platelets have always been fine. I took 2 pills and within 20 minutes the pain was going away and I was able to go to sleep for a bit. So much for an uninterrupted night of sleep. She'll just have to go to Grammy and Grampa camp again another night. I never thought I could be in so much pain, but at least now I know what to expect. At least my parents got a good night's sleep (the baby slept pretty much right on through after she was woken up by my mum at midnight).
As frustrating and annoying as these three things were, the week was really a great week. Saoirse is feeling great, and loving playing and running around the yard. She loves her swing, and she loves gardening with Mike. It's so nice to see her getting back to normal and learning so many new things. I just watch with wonder every day as she figures out something new. She's very close to walking, and I'm sure within the next week or two we are going to be chasing her around the house and the yard, running along behind her every step.