Day 5
It is looking like being out of here with a handle on what ever is going on by this weekend was maybe a little too optimistic :( still really no headway on getting Allison's blood pressure down to where they are comfortable with it. They have given us a portable blood pressure device that we will take home (whenever that is) to monitor her and she seems to be much better with mom and dad using that to get her readings. Still around 140's/100. Some higher in the 150's/110's and some lower but mostly around there. The Dr's I think are begining to become puzzled over this and looks like they might start doing some more testing - probing to find something - anything. Also they really want us to let them know about her comfort level - especially at night. And are willing to do what ever it might take to get her comfortable and sleeping. I would think her being in pain so much has to have a negative effect on her blood pressure.
Despite my best efforts and coaxing we have not been able to really get her to eat enough and she has lost a litte more weight - not alot (about .15 kg) but it is down and they are going to give her an NG (feeding tube) I am really disappointed in this - NOT that I don't think it will do her good - just that I have worked really hard with her lately to get her to eat and I think she has really tried to eat also when I try, she just doesn't eat that much at all. I know it will do her good - not that "fun" of a procedure to have done ontop of everything else she has had...
Not much else going on. More and more it looks like we are going to have to start looking "outside the box" to find answers on what is going on. They do have scheduled one other test to see if there may be any scar tissure on her kidney's which may not of showed up on the CT scan. Our room mate is going to be getting moved to another room sometime today I think, so we will have some peace and quiet atleast for awhile. I'm not sure i can go with them to have the tube put in, we are welcome and encouraged to go, just might be the trigger that makes me lose it since Ali and I have been working so hard to avoid this :( We'll see... Meg is for sure going). Allison is also going to have some more blood taken (which can be done with a prick of the finger this time) at the same time. Scheduled for around noon.
It is looking like being out of here with a handle on what ever is going on by this weekend was maybe a little too optimistic :( still really no headway on getting Allison's blood pressure down to where they are comfortable with it. They have given us a portable blood pressure device that we will take home (whenever that is) to monitor her and she seems to be much better with mom and dad using that to get her readings. Still around 140's/100. Some higher in the 150's/110's and some lower but mostly around there. The Dr's I think are begining to become puzzled over this and looks like they might start doing some more testing - probing to find something - anything. Also they really want us to let them know about her comfort level - especially at night. And are willing to do what ever it might take to get her comfortable and sleeping. I would think her being in pain so much has to have a negative effect on her blood pressure.
Despite my best efforts and coaxing we have not been able to really get her to eat enough and she has lost a litte more weight - not alot (about .15 kg) but it is down and they are going to give her an NG (feeding tube) I am really disappointed in this - NOT that I don't think it will do her good - just that I have worked really hard with her lately to get her to eat and I think she has really tried to eat also when I try, she just doesn't eat that much at all. I know it will do her good - not that "fun" of a procedure to have done ontop of everything else she has had...
Not much else going on. More and more it looks like we are going to have to start looking "outside the box" to find answers on what is going on. They do have scheduled one other test to see if there may be any scar tissure on her kidney's which may not of showed up on the CT scan. Our room mate is going to be getting moved to another room sometime today I think, so we will have some peace and quiet atleast for awhile. I'm not sure i can go with them to have the tube put in, we are welcome and encouraged to go, just might be the trigger that makes me lose it since Ali and I have been working so hard to avoid this :( We'll see... Meg is for sure going). Allison is also going to have some more blood taken (which can be done with a prick of the finger this time) at the same time. Scheduled for around noon.
2:00pmFirst of all I did make it to the procedure of getting a feeding tube for Ali, it helps that she is such a strong kid! She of course didn't like it, but really handled it pretty well considering.
They have changed the combination of medicine that they are giving her for her blood pressure (have added captopril) and initially it looks like it is working! Hopefully it will continue to work... Her blood pressure 40 minutes after getting the first dose of captopril is down to 112/69. Also they did find a marker for mono in one of her blood test. Not sure what this exactly means but could certainly mean that she had had mono recently, which could explain some of her symptoms. I guess the virus usually takes 4-6 weeks to run its course so hopefully if it is still lurking around it is almost gone... Another blood test in the near future will let us know more...
We also just got done speaking with one of her Dr's (Allison Redpath) and she is very excited about the captopril seeming to work. This is a medicine they usually prescribe specifically for renal artery stenosis (narrowing of the arteries to the kidneys), and since it seems to be working the best, supports the idea that some of the artery branching to her kidneys that are too small to see at this point may be narrowing enough to be causing the high blood pressure. This medicine was not initially given because it would of had an adverse affect if indeed she had Pheochromo Cytoma which is the very very rare tumor. But since the others were not having much affect they decided to give it a try. So... we are back to having a little bit of good news and hope that we are indeed going in the right direction. Hopefully after a few tube feedings she will get her apetite back and want to eat on her own :)
8:00 pm
Not much new. Her last blood pressure reading was back up again to 140/102 :( So she got another dose of captopril and amlodipine and we'll check again in about an hour. She has looked very tired all day today - which she should. It is just a change... not much restlessness today - alot of just laying in her bed watching movies and drifting in and out of short naps. It would be nice if this trend continued throughout the night - except with maybe more actually sleeping.
On another note... Sydney had a soccer game tonight and the reports are the she was Fantasitc! We are sad that one of us didn't get down to see it, but we did get it video taped! So thank you whoever did the taping! :) My mom is coming in from Arizona tomorrow to kind of take over the house untill we get home, so Syd will be able to be at home sleeping in her bed and getting into some kind of a routine, although I think she would rather stay on her little vacation with Auntie Beka! :) - Thank you again to all who have helped out I know she has had fun the last few days, with play dates, birthday parties, trips to the mall and just hanging out.
We did meet the Dr that is going to be taking over for the weekend for Dr Allison Redpath (why can't doctors just work 24-7! :) ) I didn't get her name, she seemed nice and we talked to her about a few things, like what signs to look for that might tell us we can take the feeding tube out, what we could expect if we were sent home with the feeding tube still in, what happens next if they can't get the blood pressure more consistently down, and what if it does come down and she still doesn't return to herself? A lot of info there, but in a nutshell atleast good to know that they are also aware of those things and are looking into what may be next, if there needs to be a next. With no roommate tonight it is much much more peacefull in our room - lets hope it stays that way and translates into some good sleep :)
They have changed the combination of medicine that they are giving her for her blood pressure (have added captopril) and initially it looks like it is working! Hopefully it will continue to work... Her blood pressure 40 minutes after getting the first dose of captopril is down to 112/69. Also they did find a marker for mono in one of her blood test. Not sure what this exactly means but could certainly mean that she had had mono recently, which could explain some of her symptoms. I guess the virus usually takes 4-6 weeks to run its course so hopefully if it is still lurking around it is almost gone... Another blood test in the near future will let us know more...
We also just got done speaking with one of her Dr's (Allison Redpath) and she is very excited about the captopril seeming to work. This is a medicine they usually prescribe specifically for renal artery stenosis (narrowing of the arteries to the kidneys), and since it seems to be working the best, supports the idea that some of the artery branching to her kidneys that are too small to see at this point may be narrowing enough to be causing the high blood pressure. This medicine was not initially given because it would of had an adverse affect if indeed she had Pheochromo Cytoma which is the very very rare tumor. But since the others were not having much affect they decided to give it a try. So... we are back to having a little bit of good news and hope that we are indeed going in the right direction. Hopefully after a few tube feedings she will get her apetite back and want to eat on her own :)
8:00 pm
Not much new. Her last blood pressure reading was back up again to 140/102 :( So she got another dose of captopril and amlodipine and we'll check again in about an hour. She has looked very tired all day today - which she should. It is just a change... not much restlessness today - alot of just laying in her bed watching movies and drifting in and out of short naps. It would be nice if this trend continued throughout the night - except with maybe more actually sleeping.
On another note... Sydney had a soccer game tonight and the reports are the she was Fantasitc! We are sad that one of us didn't get down to see it, but we did get it video taped! So thank you whoever did the taping! :) My mom is coming in from Arizona tomorrow to kind of take over the house untill we get home, so Syd will be able to be at home sleeping in her bed and getting into some kind of a routine, although I think she would rather stay on her little vacation with Auntie Beka! :) - Thank you again to all who have helped out I know she has had fun the last few days, with play dates, birthday parties, trips to the mall and just hanging out.
We did meet the Dr that is going to be taking over for the weekend for Dr Allison Redpath (why can't doctors just work 24-7! :) ) I didn't get her name, she seemed nice and we talked to her about a few things, like what signs to look for that might tell us we can take the feeding tube out, what we could expect if we were sent home with the feeding tube still in, what happens next if they can't get the blood pressure more consistently down, and what if it does come down and she still doesn't return to herself? A lot of info there, but in a nutshell atleast good to know that they are also aware of those things and are looking into what may be next, if there needs to be a next. With no roommate tonight it is much much more peacefull in our room - lets hope it stays that way and translates into some good sleep :)
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