On Saturday my brother came and spent the day with Chiara which was great as it allowed me to have a girls day out shopping with my sister in law and niece. Before we left the hospital my brother decided he would take Chiara out for a walk. As we all left the hospital we had a small incident involving a garment of my underwear being attached to a wheel of Chiara's pram, a story best kept within the hospital I think, as it certainly made the amusement for the day in the Ward.
On Sunday Chiara's rash appeared to be spreading and she was becoming a lot more itchy and uncomfortable. She had received more Piriton but had vomited this the minute it was injected into her line. Her anti-histamine was therefore changed to Cetirizine. Unfortunately that was not enough to subside the itch and Chiara received another 3 doses of Piriton over night. By morning Chiara's whole body was covered in an urticarial rash with puffiness of her face and eyes, very typical of an allergic reaction. Chiara was fasted and prepared for theatre to have skin biopsies taken. She was evaluated by a Dermatologist who felt this was more a reaction to a drug or a viral infection. Her biopsy was therefore cancelled as was theatre. She was prescribed Elecon cream to apply and continue with Piriton. Chiara's next dose of Piriton was not due until later on that evening and she was starting to show signs of improvement. Her Piriton dose was given at around 6.30pm and she vomited immediately and became flushed again. It was starting to look as if her reaction was to Piriton which is the most unusual medicine to be allergic to. She has been on Cetirizine and creams since Tuesday morning and her rash is showing great improvement. Unfortunately as you will have realised this kept us in hospital and we never made it home on Sunday.
We are hopeful that we will be homeward bound within the next few days providing the rash settles.
Chiara's medicines have increased yet again and we were handed 13 morning medicines alone to give her orally, I decided then that it was unfair on her to manage these, given that she would need to take another 4 at lunch, 4 at dinner and around 10 at bedtime therefore I opted for an NG tube to be inserted for medicines only. This will be removed once her dependency on medicines reduce.
She is eating as healthy as ever with steak pie, potatoes and beans for dinner. Her fluid intake remains fab with her consuming at least 1400ml per day.
Her sleep study from last week revealed that she no longer requires her BIPAP machine overnight which is yet another huge step forward. Today Chiara had bloods taken for her White Cell Enzyme level to see if she is producing enough on her own to allow her weekly infusion of ERT to cease. She also had a urine test to check and see if her GAGS have reduced also. Her blood counts remain brilliant , with high Neutrafil counts and acceptable Haemoglobin and Platelets and to date has not received transfusion since transplant.
Last week my girl and I appeared in the Sun Newspaper as I had been nominated for a competition as an Ideal Mum. I dont think of myself as anything more special than any other Parent that is in this ward. We all endure so much and watch our kids go through so much pain and treatment it is hard to single one person out. There is not one person in here that hasnt cried as much as me or felt isolated as much as me, we are all in the same position but every day we all face the challenges that are set in front of us and our children. Every one of the parents I have had the experience of befriending all deserve the title of ideal mum or ideal dad. Watching your child fight for life every day is one of the hardest tasks a parent will probably every have to deal with.
I hope that my next entry will be from home and I will have ALL my family around me, it is becoming lonely in this hospital room just me and my girl, I miss my boys and look forward heading home for good with my ever improving girl and her new engrafted marrow.
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