Hi all, Jake had his appointmet on wednesday, and I wish I had better news, but I dont. It seems like the drugs are'nt working for him, As his blood has dropped by 1.3 this time. We were so hopeful as they had gone up by 0.2 last time. And I know it wasnt much but it gave us the hope that they were working, and the hope it would make jakes life easier for him. But seems not to be the case. Well for the next 2 weeks jake will stay on the high 20mg dose of predisolone and then they will start to wean him off by reducing the doseage, each time. Jake will need another transfusion when we go back for his appointment and they will take more bloods, and do more tests to see if there is anything else under lying. But for jake his next step is having to go on blood transfusion therapy, which is going to be long hard and gruling for him. He hates having to have the canular fitted, for his orange juice (blood), he hates having to sit there for hours after for it to be done, and all the waiting around. But how do you explain to a 4 year old, that this your life. The hardest thing is the hoping, but we still do it, and I hope that when we go back ,some miracle has happened and the meds work. I know they try and prepare us for the following week to come, and what must be done, And they are amazing at there job. But without the hope what else do we have. Well they have given jake next week off for some well earned hospital free time, so I will update soon with more on jakeys journey, and his progress soon. And will add as much information on blood transfusion therapy and what it all means for him, when he starts on the 31st August. Thank you all for your support.
In the words of Jakey
Bee Happy
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