Good morning everyone.
Great ormond street is Chiane’s “primary care hospital” but our “out of patient care centre” is our local hospital.
Between chemo and radio therapy, if Chiane’s is home and gets ill, she has to come to our local hospital (Chase farm hospital). Great ormond street work very closely with our local hospital and chase farm paediatric unit has a copy of her great ormond street file. They know everything about Chiane and GOSH prep them very well.
As you know, if chiane’s temperate gets to 38 we have to notify our chase farm hospital, when she get to 38.5 we have to leave immediately and take her in to start a course of antibiotics… Chase farm hospital is about 10 min from our home.
Yesterday I took Chiane to ST Thomas hospital close to parliament square in the city to test her for Heparin allergy.
We got up at 6 am yesterday, we gave Chiane her injections, took her temperature and she was 36.5! She was all good so I decided to take her for the test (it’s an hour in a half drives to St Thomas). Her appointment was at 9 am. We left home at 7:30 am. By the time I got to St Tomas to get her tested for Heparin, she looked ill… Very ill. I took her temperature in the car park at ST Thomas hospital and Chianes temperature was 38.5 (which means I have to get her to chase farm ASAP but I was more than an hour away!!!) I was shocked just how quickly she got ill…(less than 2 hours).
I decided to take her in to ST Thomas because we were there already. As soon as I got in I explained to the paediatric unit that I need them to look at her ASAP because I need to leave again. They were aware she came in for the allergy test but they didn’t know about her chemo etc etc. They had a quick look at her and told us to take het to our local hospital.
They were doubtful that Chiane has an allergy to heparin but they cant test her because of the state she was in. We have been told that an allergy will not damage her tissue unless it leaked out. We had to leave immediately for Chase farm hospital as her temperature was getting very high and she needs treatment. I understood because there is a specific protocol to follow and ST Thomas didn’t have her medical records and they can do more harm than good if they start treating her. They told me they will arrange an ambulance to take her. I laughed and said to him that ambulances in London sometimes respond 2/3 hours later to heart attacks and I can’t risk it. So I left with Chiane. Her temperature was 39.3 when we left the car park at ST Thomas. I was freaking out and it was the longest hour and a half drive of my life!!!
I spoke a few times to chase farm on my way to them and by the time I got there the paediatric unit was waiting outside for us. Chiane was very weak by then, her eyes was glassy and she was almost unconscious, drifting in and out of it. They were very quick to start treatment and testing. I was surprised how quickly they responded and just how sufficient they are. (they originally found the tumour in her brain) and referee us to GOSH. It gave me peace of mind to know our local hospital was so quick to respond re her state. They knew exactly what to do because they had her medical records and they liaised with great ormond street while I was on my way to them. Within 2 hours Chiane was stable. They established that she developed a throat and chest infection and they started treatment. Her neutrophils were zero, which means the injections we have been giving her hasn’t “kicked in yet”. They started a clinically screened blood transfusion because her red blood cells are below 7 which is extremely low…(red blood cells carries oxygen through your body). The blood transfusion is specific and she can’t just get any blood that is her blood type. It has to be “of transfusion associated craft-versus-host disease” free and must be gamma irritated (I’m not going into further detail) but she needed very special blood. Chase farm started antibiotic, blood transfusion and she has her shadow back. It’s a 4 day course of treatment in our local hospital. I doubt we will be going in on Sunday at great ormond as planned because of her treatment now at chase farm.
By 4 pm yesterday Chiane looked much better, her temperature came down to 36.5 (due to calpol…. it only treats the symptoms) but the “honeymoon period is over”… Chiane is back in hospital instead of being home until Sunday. Once she is healthy again they will start harvesting once her blood levels are correct to do so.
Chiane is NOT happy! Ahahahahh
She said to me that: “I had no visitors at home, we didn’t go to any public places, I wash my hands constantly, I eat and drink all my food… How did I get ill?”… I explained to her that she is “completely open to any infections or illnesses”. How she got it… No idea as we are all healthy at home! Lessons learned!
1. Even though she is healthy we can’t assume she will be in 2 hours time so from now on, we will stay local to our area only! She can get sick very quickly!
2. St Thomas has her info now and will liaise with GOSH but they are almost 100% she is not allergic to heparin (further tests pending though). If she is not allergic it will make Chiane’s life much easier because heparin are very important to keep her lines open (her wigglies from not getting clotted with blood…) (I will explain this later if she is not allergic and tests have been carried out on her).