Rock Baby went into hospital on Monday to start the treatment for her birthmark, as you may be aware I was so nervous about this and was really worrying as to whether we had made the right decision to go ahead.
We arrived at 11am and she had her ECG, blood sugar test (heel prick), blood pressure and blood tests and she coped with these amazingly she obviously cried when they took the blood but no way near as much as I was expecting she was so brave. At 2 pm they gave her the first dose of the drug Propronal, which in effect is a beta blocker which constricts blood supply to the birthmark. They have to test blood sugar and blood pressure 45 mins after administering it and again 2 hours after.
Her blood pressure was notoriously hard to find, the automatic machines would not pick it up as she was just too small and when they did it manually they were struggling to hear so what should have taken minutes ended up taking longer making her very uncomfortable. When they did the heel prick two hours after her blood sugar level had dropped so they suggested giving her some food and milk to see if it would pick up. When they retested it had dropped even lower, not dangerously low but low enough to cause concern.
So when they gave her the second dose at 6pm they only gave her half a dose and they did yet another heel prick and her levels had returned to normal. We were getting her ready to settle her down for the night when the nurse came in and said she had spoken to the doctor and they felt that she should have a cannula put in just in case the sugar level dropped in the night and she needed a drip.
When we were weighing up the pros and cons of having the treatment this was never mentioned that this could be a possibility, so it was a shock to hear she would now have to have the cannula. I just couldn't understand it as her blood sugar was normal as was all her other vitals but on the safe side they wanted it in. In one respect I can understand why as its much more difficult to get a cannula in when something does go wrong but on a 6 month old baby I feel they could have waited for just another hour to see if anything had changed then made the decision as to whether to put one in.
I couldn't go in with her, I watched my husband carry her into the room and as I paced around I thought I was going to be sick as I could just hear her screaming whilst they put it in. It was heartbreaking and as if I didn't feel guilty enough this was the limit for me and I was so upset at putting her through it.
She came out of the room shaking and sweating it was awful her little hand was in a splint and all bandaged up but its amazing how quickly she settled and started smiling again. We got her to bed about 8pm but they had to wake her up every hour till 2am in the morning checking her blood pressure etc.
None of the nurses could get a reading on the blood pressure so what should have taken minutes ended up taking forty minutes and in the end they had to call the doctor to take it. 2am she had the last dose and then they left her alone till the morning.
She had another final dose at 10am the following morning and then we were allowed home. They got the student nurses to take out the cannula and do one last blood pressure check which did annoy me as they really hurt her and I know students need the practice but they knew the blood pressure was hard to get and the nurse was under pressure to get a reading and ended up leaving marks on her little arm where it was done up too tight.
I was just really upset by the whole thing, I just feel we weren't properly briefed as to what could happen i.e the likelihood that she may need a cannula and the amount of monitoring that was required. As we left we were also told she would need the medicine 3 times a day and it had to be spaced out every 8 hours, which means giving her a dose at 11pm at night. I wasn't happy about this as she has just started sleeping through the night from 7pm to 7am and the last thing we wanted was to disturb her and muck up her sleep.
However we tried last night and even though it did wake her a little she settled straight back down but if it does start becoming an issue I'm going to see if they can sort the dose out so she can have it 3 times in the day.
I think in the end she must have had about 10 heel pricks and in the night they were using her fingers, but you know she kept smiling and beaming at them in between the bits when they were hurting her. I couldn't believe how well she coped with it all and she already seems to have forgotten about the whole thing.
We were glad to get her home, she hasn't been unsettled and on Tuesday she slept for most of the day. I now just hope that it was all worth it and that soon we should see her birthmark reducing in size.
(Above Pic) - Recovering at home the next day