We thought Niamh's infection was coming to an end but unfortunately her fever is back since 2am last night and keeps creeping up. She has already had three doses of calpol today.
Despite the fevers, Niamh has seemed a little better in herself today (once calpol kicks in). We had a good physio session. Niamh has lost a lot of strength in the last week. Her hands are also a lot weaker than they were and she struggles with them. Still she was able to walk to the playroom and back which she wasn't able to do yesterday.
As far as the MRI is concerned, we are still struggling to come to terms with what happened yesterday. We have now been told that she is on the "extras" list for tomorrow, ie. if there is a cancellation she will get a slot. So she will need to be starved once again from 3am and we are not guaranteed that she will get a slot. Another long day of waiting. Supposedly if she does not have the MRI tomorrow, they will definitely give her a slot on Friday.
As for the infection, we still have no idea what is causing it. This is getting very worrying. All the cultures they have taken so far have come back negative, still no results from her line taken on Saturday evening. The Consultant oncologist asked for Niamh to have a chest Xray today to make sure there is no infection in her chest. We do not yet have the results but the doctor did say it would be unlikely as her chest sounds fine. The neurosurgeons are not keen to intervene yet, they want to see the scan first. One possibility is that one or both of her shunts could be infected. This would be really bad news.
She was very brave today, the cannula in her hand which she needs for the IV antibiotics got blocked, they had to remove it and put a new one in. She now has one in her left hand. It was not pleasant. She also needed a blood test which was done by pricking her thumb and squeezing it hard for about 10 mins. Once again very unpleasant. Plus we had to pass a new NG tube as she got so upset with the cannula that she had a little vomit and the tube came out. She really has had her fair share.
We are still hoping and praying that she will be out of hospital by the end of the week so she can enjoy her birthday on Sunday.
Oh Helene. I'm so sorry they messed you around with such an important scan you must be beside yourselves. For them it's about getting the slot; for you it's the whole future.. just not fair on you.
ReplyDeleteI really hope the infection is improving a bit today; you're right it is very worrying. Have they explained why they think the shunts could be the cause - it seems like a long time after they were put in to be causing problems doesn't it? I'm sure thye have already done this, but wih Daisy they did urine samples - kidney infections can cause high temperatures.
We continue to think about you all and hope and pray for the best for Niamh.
Love Lucy, James & Daisy