What a week. It seems lately that every week or so there is always something dramatic going on or something rubbish happening. I’ve been working hard on remembering to take my meds, and to keep plodding on and be more upbeat. But when life starts throwing threatening illnesses and diagnoses at my child, cars breaking down, and whatever else has happened lately it really starts to get you down.
At the weekend we tried to go to a BBQ we had been invited to. I was really excited to go and there was a paddling pool and bouncy castle there too. But I knew Amy wasn’t 100%. I wasn’t sure what sort of illness she was brewing but I did notice in the morning that there was a mild tracheal tug going on. I put it down to hayfever and a cold as her eyes and nose had been so runny. So I medicated her up and decided we would go anyway and if she wasn’t up to it we wouldn’t stay long.
We had been there less than an hour and she was looking awful. We put her in my friend’s daughter’s bed to let her rest, put some videos on for her and watched her. My friend’s child has loads going on medically so we checked her sats and obvs (temp, resps, oxygen levels etc). Her heart rate was really fast and her temp was very high. So we rang the hospital and asked to have her assessed.
Once we got there I was adamant that what we were seeing was a chest infection. I told the doctor she didn’t need an xray as he could hear that she had a strong crackle on one side of her chest. We all agreed oral antibiotics be prescribed and then us all go home.
The nurse came in to do a final set of observations before sending us home. The sats showed as 82. We were so shocked. Sats are usually 99/100%, anything below 92 is cause for concern and usually a person is put on oxygen. The doctor literally ripped up the discharge letter and got us admitted to an open ward.
Amy was put on oxygen but this wasn’t bringing her levels up enough. A salbutamol nebuliser was given, blood gases tested, a canula inserted for antibiotics and fluids (took 4 goes poor thing) and optiflow oxygen started (wet/humified oxygen). It was so alarming. I haven’t seen her fight for her life like that in a very long time. We are used to fairly regular chest infections but nothing like this.
Eventually she stablised and she was left on the optiflow and maintaining decent sats levels. Our pediatrician happened to be working that night and came in to see us.
“Amy’s results are back from her EEG” she said. I felt a bit sick. I have been waiting for these results for a few weeks. We know she had that one big seizure, and I know that for a few months I’ve been constantly saying how amy is different and doing “strange” things. But I really thought the EEG wouldn’t have picked anything up and that either she wasn’t having seizures, or maybe she needed a 24 hour EEG.
“The EEG showed that she is having A LOT of unwanted electrical activity”. So in addition to her rescue meds she now also has sodium valporate twice a day. Her trihexiphenidyl was also swapped for levadopa. It was devastating. Seizures were the one thing we thought she had escaped on this whole cerebral palsy journey.
Day by day she is getting better and we only stayed in a couple of nights. She’s still on antibiotics but just through her tube and not an IV.
It’s all been really tough. She’s not been at school this week… she was only in one day last week too because of her GJ change at the city hospital.
I really really hope that as the meds get increased week by week we start to see our old Amy again. I miss the smiles. She can be happy.. but not like before. Something is stopping her. Obviously I am worried also about her getting bad side effects from meds. The picture I put up there is her 8am meds from this morning. I can’t believe how many syringes of meds she has each day. I am on a bit of a downer about it all and still processing it and aside from that there is a lot of other stuff going on in our lives… I just hope soon things settle and we can start to build nice memories again and be happier. I know Phil is struggling too. Just want everyone happy and well.
I have so much more to ramble on about, but I need to get myself ready to pick her up from respite. Haven’t really stopped today, been playing catch up. Should have a nice weekend though, got lots of nice family stuff planned.