Considering I always love to write a whole novel on Sunday's, I am always short on words on Monday's. Must be because I am worn out from to much thinking on the weekend :)
Yesterday was a busy day in our home starting at 11 AM with OT for Connor, 11:30 AM ST and at 1 PM PT. OT and ST were just evaluations this time and PT went really well since Miss Mariann is truly a great match for Connor. She understands him very well and even has him show off for her :)
OT evaluation was a positive for Connor in one regard as the Therapist looked at all the LEGO and said this was great therapy for him :) of to building palaces again.
We also got a call from 'Make a Wish' and they were scheduling all the little Wish Recipients until the end of August. We asked if it was possible to have Connor put on hold until the Fall since all his wishes included traveling and he is not stable for that. To many infusions still a week and medications. We would love to be to a once a week for infusions so we could have a 6 day window :) Good thing Connor does not seem to mind .....
I am also realizing that Easter is bypassing me big time this year. We have not done any decorating and I am not sure if we will hide any eggs either. Neither of the boys has shown or told us they are missing anything so far and by them being shielded at home it does not seem to make a huge impacted. I am motivated as well again to go back to my baking, so this year the boys will get a Strawberry Cake with lots of fresh whip cream! I used to be so big on schedules and traditions and now it is hard to be motivated into either. The only schedule that matters right now is his Medications and the rest of the day I have to get school in and then it is a free for all. Oh, we do still eat and we did not give up on Coffee and Cake yet - ha ha.
Today, Connor received his Solumedrol Infusion again plus the additional blood work every Tuesday as well as a urine sample. Everything went smooth and still I felt uneasy. The infusion took a bit over one hour and Connor's nurse left after setting it all up. When the drip was done I flushed his line with Saline followed by Heparin and then pulled out his Butterfly Needle. It all went well and still the whole time I was thinking what if something goes wrong right now? We are truly 1 hour 10 mi away from Memorial and here we just came off from 51 days of 24/7 supervision to hardly none at all....
Now you all heard me talk about something being on my mind and then all of a sudden someone enters my life and gives me an answer to my questions. Same today! I took my parents and Alexander to COSTCO this afternoon while Ron stayed home with Connor and when we got home and I checked my e-mail there was a message from a Mom who has a 7 year old son with JDM. She said she read my blog and that she was faced with a very similar situation about the port and infusions. She mentioned it to Dr. Pachman's Staff they said 'NO'. When a child gets the infusions they are suppose to be monitored by a Nurse for Blood Pressure, Pulse and Temperature. Well this makes complete sense to me when I read it because this is what was done in the hospital. Connor had all his vitals checked every 15 minuted when he was hooked up. So THANK YOU SO MUCH for taking the time to write me an e-mail. Where would we be if it was not for those Mom and Dads we are meeting on this journey that have done this and been there - sadly so!
Hope You all had a good day today. Here in Colorado it was once again a beautiful sunny blue sky and temperatures in the 60's. It's time for all the melted snow to turn everything into a mud bath :)
Hugs,
R A C A
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