Day 4
Is it really Day 4? Its hard to keep straight. I think one of us (Megan or I) is due to make a run home today. Need some more clothes and things - didn't really expect to be here this long... And we need to check in on Sydney. We know she is doing well, and are so thankful for all the help we have had in looking after her while we are here with Ali.
Last night again was not a very good night - as far as sleep goes.. She got some benadryl to start the night off to help her sleep, and it did, but only for a couple of hours. After that I think she was up squirming and fidgeting around the rest of the night! Even after another dose of occycodone at about 4:30am. I don't think it helps with the shared room with the commotion that goes on off and on throughout the night. Today as far as we know no more tests just trying to tweak medication to get her blood pressure down. So far they have had limited success in that. Throughout the night it was pretty consistently 140's/100. The goal is to get her blood pressure down to a consistent 120/80 and feeling better before going home. Maybe her blood pressure is still too high for her to be comfortable... something to ask today... If she looks like she may be feeling better today, we are going to try and get her up to the playroom to see if she has any desire to play a little bit. If nothing else get her out of this room for a bit. She didn't want any breakfast this morning but mean old dad pretty much made her take a few bites of toast followed by a few bites of yogurt - untill she had enough and pretty much told me off :) We still need a clean urine sample today to rule out a urninary tract infection.
Is it really Day 4? Its hard to keep straight. I think one of us (Megan or I) is due to make a run home today. Need some more clothes and things - didn't really expect to be here this long... And we need to check in on Sydney. We know she is doing well, and are so thankful for all the help we have had in looking after her while we are here with Ali.
Last night again was not a very good night - as far as sleep goes.. She got some benadryl to start the night off to help her sleep, and it did, but only for a couple of hours. After that I think she was up squirming and fidgeting around the rest of the night! Even after another dose of occycodone at about 4:30am. I don't think it helps with the shared room with the commotion that goes on off and on throughout the night. Today as far as we know no more tests just trying to tweak medication to get her blood pressure down. So far they have had limited success in that. Throughout the night it was pretty consistently 140's/100. The goal is to get her blood pressure down to a consistent 120/80 and feeling better before going home. Maybe her blood pressure is still too high for her to be comfortable... something to ask today... If she looks like she may be feeling better today, we are going to try and get her up to the playroom to see if she has any desire to play a little bit. If nothing else get her out of this room for a bit. She didn't want any breakfast this morning but mean old dad pretty much made her take a few bites of toast followed by a few bites of yogurt - untill she had enough and pretty much told me off :) We still need a clean urine sample today to rule out a urninary tract infection.
10:30am First Round table..Just got done with the first round table discussion with our new team. Pretty much the team of Dr.'s come down to the room and meets just outside. We are more than welcome and encouraged to join. Matt (saw us in the ER) and Allion (Redpath) updated the team on the history and current progress of Allison and then the team discusses her case. I pretty much found out the blood pressure medication regiment she was on last night had little or no affect :( which is what I had thought, so they are getting more aggressive today. Although one of the medications she is getting takes about 3 days to really see if it is having any affect. Also they would really like to get her sleeping pattern back to normal - having her sleep at night. Which was good to hear because that is concern of ours to as she doesn't really sleep at all... So they are going to concentrate on that and do what they can to make sure she starts getting some sleep. Also they would like to limit her salt intake, to help with the blood pressure, so they notified they nutritionist and we just need to kind of keep track if we give her anything else - like McDonalds Hamburger and chicken nuggets :) that she asks for every now and then :) The team meeting was a pretty good experience as it caught me up and reviewed what is going on and I could hear exactly what they are thinking and planning on doing. Disappointing so far the medications haven't had much affect, but it will be changing and hopefully we will find a combination and amount that will help.
7:30pm
I headed home for a bit today. Got some more clothes and a few other things since we are going to be here a few more days. And was able to see Sydney for a little bit. Sydney even packed a bag with some toys and a few movies for her sister. The latest blood pressure on the board I see is 132/72. They need to see a 120/80 consistently for 24 hrs to let us out of here - and of course for her to be seeming a little more like herself. The only real change I guess when I was gone is that Meg spoke with one of her Dr.'s (Allison Redpath) and they are becoming concerned that she is still not eating... (that has been concerning me for a while :) ) So... they are going to check her weight tomorrow and if she is continueing to lose weight since she has been her they will probably put a feeding tube in her :( They would rather not, but she really needs some calories... that will be tough I think, but I really think mostly she needs to catch up on her sleep and start eating to feel better so in the long run it should only help. Poor kid :( Also they think she may be a little dehydrated so they added a dose of straight saline to her IV at a rate of 100ml/hr... Lets hope she starts feeling better soon!
I headed home for a bit today. Got some more clothes and a few other things since we are going to be here a few more days. And was able to see Sydney for a little bit. Sydney even packed a bag with some toys and a few movies for her sister. The latest blood pressure on the board I see is 132/72. They need to see a 120/80 consistently for 24 hrs to let us out of here - and of course for her to be seeming a little more like herself. The only real change I guess when I was gone is that Meg spoke with one of her Dr.'s (Allison Redpath) and they are becoming concerned that she is still not eating... (that has been concerning me for a while :) ) So... they are going to check her weight tomorrow and if she is continueing to lose weight since she has been her they will probably put a feeding tube in her :( They would rather not, but she really needs some calories... that will be tough I think, but I really think mostly she needs to catch up on her sleep and start eating to feel better so in the long run it should only help. Poor kid :( Also they think she may be a little dehydrated so they added a dose of straight saline to her IV at a rate of 100ml/hr... Lets hope she starts feeling better soon!
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