Dorothy from The Wizard of Oz was correct there's no place like home.
So first we hit our second negative for CMV and second we hit the door and headed home. It was so great to sleep in our own beds and shower at home last night. All I want to do is lay in bed all day and take 5 showers and yes actually watch the news which I never do at the hospital. I know that sounds weird. But alas today will be busy if I can ever get going. Today will be busy with unpacking, readjustment to the house and restocking meds and food but only after getting the newest home treatment going. Th e new protocol will be once a day home administration (woohoo) of the Foscarnate drug. This isnwhat he had in the hospital. The first week was three times a day, then the second week was twice a day now after the second- reading of CMV he is able to come home for once a day treatment that I can administer. because he was monitored so closely for the past two weeks and Thank G-d showed no negative side effects that everyone was so worried about he is now able to come home for the remainder of the treatment. he will need to stay on this treatment till at least he is finished with his eye treatments which is through August and then we will see what happens after that. unfortunately each day's treatment is at least 90 minutes with an hour of pre hydration and an hour of post hydration so that is a pretty good chunk of time each day. it is at least at home and that is much better than being in the hospital so I am not complaining (much :/). Daniel still also has to continue his g-csf or neupogen which is the synthetic drug which helps keep his AMC or bone marrow count up while he is on the other drug hopefully this will be reduced soon. The Ganciclovir that he was on since January that he is now off of because this new drug is replacing it was much more suppressing to his bone marrow. he has been off of that for about 2 weeks now and in about 2 weeks from now we should start to see the bone marrow having a booth on its own starting to come back. overall, all roads looking good for Home healing and hospital visits will be down to once-a-week regular infusions and an extra visit for me delivering blood draws that I will do at home. when I take in these samples once a week they will test them to see his levels of everything and make adjustments from there to his daily other meds and that way I can make adjustments at home instead of him having to be in the hospital for them to do it. luckily they are confident enough in my ability and our ability to take care of all of this at home. they have done a good job of training me to do the blood draws and adjustments in maths at home so that we can thankfully stay at home.
Dorothy from The Wizard of Oz was correct there's no place like home.
2 Comments
Aunty Mandy
7/16/2015 11:27:34 pm
Great to hear you are back home again.
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6/6/2016 12:42:44 am
when I take in these samples once a week they will test them to see his levels of everything and make adjustments from there to his daily other meds and that way I can make adjustments at home instead of him having to be in the hospital for them to do it
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