Day 6
Hmm.. Well Dr. Vo just stopped by because he had heard that her blood pressure medicines have changed in frequency and or dose. This concerned him somewhat in that he has expected the medications to be much more affective, although like everyone else since the captopril seems to have an affect he think renal artery stenosis is the likely cause. He would very much like to get her more stable before doing an angiogram, although he is considering maybe doing that by tuesday if she does not show signs of getting much better. He is going to stop by again tomorrow to check in and see how she is doing. If she hasn't shown signs of having her blood pressure under control by monday he is thinking of scheduling the angiogram for tuesday. He is kind of hesitant about this, since it is not 100% that she has narrowed arteries and he would like her to be more stable - although if the blood pressure isn't being controlled and she isn't comfortable he wants to find out why and see about getting it fixed.
Sunday, January 31, 2010
Saturday, January 30, 2010
Friday, January 29, 2010
May 1, 2010 - 6:00pm
Today has had it's good moments :) This afternoon Ali has shown glimpses of her old self. She played for a bit with mom with a stuffed bear and some play doctor stuff that one of the staff had dropped off. It was good to see. She has had no interest in playing with anything in a week or better... Also Katie (Carter) stopped by, and Ali was really glad to see her I think. Ali wanted Katie to hold her and she fell asleep on Katie's shoulder for awhile. Also when Katie tried to leave Ali wouldn't let her, whining and telling her to stay :) - Katie will be back tomorrow :) (Katie could very well be here 2nd mom :) ) Ali also still has her down times where she is a little whiny and you can tell she doesn't feel well. We also all sat in her bed and watched utube funny videos for a while, which she enjoyed (dancing babies, kitty cats, etc). Some music videos too that she even waved her little arm to the beat for a bit... :) very encouraging. Although you could tell just this little stuff was draining her as she obviously doesn't have the strength she should... but it is good.
Her blood pressure has actually hung around 115/80 since 2:00pm and atleast 120/90 from about noon to 2.
Maybe, just maybe the new combination of meds is having a good affect...
Well Gramma, Auntie Beka, and Sydney should be here soon also. Hope we haven't wore her out too much for a visit! :)
Her blood pressure has actually hung around 115/80 since 2:00pm and atleast 120/90 from about noon to 2.
Maybe, just maybe the new combination of meds is having a good affect...
Well Gramma, Auntie Beka, and Sydney should be here soon also. Hope we haven't wore her out too much for a visit! :)
Thursday, January 28, 2010
May 2, 2010 - 9:00am
Day 7
Well once again Allison slept until about midnight and then was up the rest of the night. At one point she had rolled around and got her feeding tube line wrapped around her neck :) - and I imagine in an effort to get it off pulled it out, so we had to go have it put back in - poor kid :( But they have disconnected the IV line so the feeding tube is the only one for now. The IV is still in - just not connected to anything.
Her blood pressures have been pretty consistently around the 120/80 mark that we have been shooting for. And she looks like she is beginning to feel better. Sydney, Aunt Rebekah, and Grandma Kate visited last night, which Allison really liked. She was at the end of the day and getting tired but I think she liked to see her sister - who of course brought her some crafts :) A card and a doll she had made out of paper.
Lindsey is back on as her nurse - who is about the only one we have seen more than once - and thankfully has been one of the best ones - always very gentle with Ali and concerned about keeping her comfortable.. Ali is back asleep now - which has been her pattern. Up from midnight to about 8:00am and then gets in a nice nap till about 10:00am.
Lets hope her blood pressure gets even a little better today with out any high swings and we can build on some of the improvements from yesterday. I am hoping she will gain some interest in food today so we can get her off the feeding tube, then she won't have anything else tying her down and maybe we can get her to the kids play room... maybe :)
Well once again Allison slept until about midnight and then was up the rest of the night. At one point she had rolled around and got her feeding tube line wrapped around her neck :) - and I imagine in an effort to get it off pulled it out, so we had to go have it put back in - poor kid :( But they have disconnected the IV line so the feeding tube is the only one for now. The IV is still in - just not connected to anything.
Her blood pressures have been pretty consistently around the 120/80 mark that we have been shooting for. And she looks like she is beginning to feel better. Sydney, Aunt Rebekah, and Grandma Kate visited last night, which Allison really liked. She was at the end of the day and getting tired but I think she liked to see her sister - who of course brought her some crafts :) A card and a doll she had made out of paper.
Lindsey is back on as her nurse - who is about the only one we have seen more than once - and thankfully has been one of the best ones - always very gentle with Ali and concerned about keeping her comfortable.. Ali is back asleep now - which has been her pattern. Up from midnight to about 8:00am and then gets in a nice nap till about 10:00am.
Lets hope her blood pressure gets even a little better today with out any high swings and we can build on some of the improvements from yesterday. I am hoping she will gain some interest in food today so we can get her off the feeding tube, then she won't have anything else tying her down and maybe we can get her to the kids play room... maybe :)
Wednesday, January 27, 2010
May 2, 2010 - 1:00pm
Day 7
Just spoke with a couple doctors from Ali's team. They just stopped in to see how things were going. It looks like they are going to increase her dose of the captopril to try and bring her blood pressure down some more. The plan is now that sometime over the next few days to get her on a different medication that will last all day and just use the captopril as needed. And they see sending us home maybe by the end of the week if all goes well... So a few days was a little optimistic it looks like. Although I would rather be here until we know for sure she is stable and back to normal before heading home. We also spoke to them about the angiogram that she will need and found out more about that procedure. It looks like they are back to putting the angiogram off again until later sometime after she goes home for a bit. Also they are looking on getting us moved up to the 4th floor, where I guess her team of doctors is more located... hopefully still by ourselves? :)
Just spoke with a couple doctors from Ali's team. They just stopped in to see how things were going. It looks like they are going to increase her dose of the captopril to try and bring her blood pressure down some more. The plan is now that sometime over the next few days to get her on a different medication that will last all day and just use the captopril as needed. And they see sending us home maybe by the end of the week if all goes well... So a few days was a little optimistic it looks like. Although I would rather be here until we know for sure she is stable and back to normal before heading home. We also spoke to them about the angiogram that she will need and found out more about that procedure. It looks like they are back to putting the angiogram off again until later sometime after she goes home for a bit. Also they are looking on getting us moved up to the 4th floor, where I guess her team of doctors is more located... hopefully still by ourselves? :)
Tuesday, January 26, 2010
May 2, 2010 - 8:30pm
Grandma arrived yesterday who's help is greatly appreciated. She will be staying at the house and chasing after Sydney for a while, taking to and from preschool, soccer practice, and I am sure making 100's of crafts! :) If everything remains on schedule Ali should sleep for the next few hours and then be up from about midnight on.. :(
I had planned on maybe returning to work tomorrow (monday), but I am going to stay here atleast another day. I wanted to be here to speak with Dr. Vo and the other doctors to see for sure what they are thinking about a timeline for the angiogram. At one time it was a possibility to do on tuesday, I think with her blood pressure being down somewhat they might hold off again, but we'll get the official word tomorrow.
Monday, January 25, 2010
May 3, 2010 - Noon
Day 8
This morning has been a busy morning... Last night was a rough night... Last night Ali was very uncomfortable and rolled all over her bed - didn't sleep much, a few "naps" here and there.
This morning the doctors once again are making their rounds after the weekend. Here is what happened:
There was some confusion over the weekend whether or not we still needed a urine sample. We had thought the doctors had told us not to worry about it - the nurses still had it in the chart and would bring it up every shift change - along with continuing ear drops (for a ear infection she had a while ago).. As it turns out No urine sample needed and can stop the ear drops (which we had). Also she is having a renal scan today. A scan where they inject radioactive dye in her and 4 hours later take a special x-ray that will then show a better picture of her (smaller) arteries, to look for the narrowing. Also since the blood pressure still isn't down to where they would ideally like it they are going to do an angiogram either Tuesday or Wednesday.
We also spoke with Jennifer with the Dietary dept, about her eating etc. It looks like when we go home we will probably be going home with the feeding tube still in Ali and will continue to feed her that way until she gets her appetite back and begins eating on her own. This could change if she begins to eat by the time we leave, but is a good possibility since she still has no interest in food. Jennifer will put together a plan for that. We are going to switch to just feeding her at night instead of around the clock in preparation for the schedule we would be on when we go home. With the angiogram go forward by Wednesday I am assuming even the end of the week for going home will be pushed back a little more :( Not the best news, but again I would rather have her be here until we know for sure she is definitely on the track of getting better.
She has had a couple canine visiters the last couple of days - which she has liked. The weener dog (leroy) came today just at the right time, as something had upset Ali and she was in the middle of crying and being pretty upset. Leroy was able to calm her down pretty quickly :) Ai did have some occycodone this morning which she seemed to help her get comfortable, as for a bit she was pretty talkative, and now is relaxing watching Dora... We are just waiting for the renal scan today and then to see when the angiogram is going to be scheduled for.
This morning has been a busy morning... Last night was a rough night... Last night Ali was very uncomfortable and rolled all over her bed - didn't sleep much, a few "naps" here and there.
This morning the doctors once again are making their rounds after the weekend. Here is what happened:
There was some confusion over the weekend whether or not we still needed a urine sample. We had thought the doctors had told us not to worry about it - the nurses still had it in the chart and would bring it up every shift change - along with continuing ear drops (for a ear infection she had a while ago).. As it turns out No urine sample needed and can stop the ear drops (which we had). Also she is having a renal scan today. A scan where they inject radioactive dye in her and 4 hours later take a special x-ray that will then show a better picture of her (smaller) arteries, to look for the narrowing. Also since the blood pressure still isn't down to where they would ideally like it they are going to do an angiogram either Tuesday or Wednesday.
We also spoke with Jennifer with the Dietary dept, about her eating etc. It looks like when we go home we will probably be going home with the feeding tube still in Ali and will continue to feed her that way until she gets her appetite back and begins eating on her own. This could change if she begins to eat by the time we leave, but is a good possibility since she still has no interest in food. Jennifer will put together a plan for that. We are going to switch to just feeding her at night instead of around the clock in preparation for the schedule we would be on when we go home. With the angiogram go forward by Wednesday I am assuming even the end of the week for going home will be pushed back a little more :( Not the best news, but again I would rather have her be here until we know for sure she is definitely on the track of getting better.
She has had a couple canine visiters the last couple of days - which she has liked. The weener dog (leroy) came today just at the right time, as something had upset Ali and she was in the middle of crying and being pretty upset. Leroy was able to calm her down pretty quickly :) Ai did have some occycodone this morning which she seemed to help her get comfortable, as for a bit she was pretty talkative, and now is relaxing watching Dora... We are just waiting for the renal scan today and then to see when the angiogram is going to be scheduled for.
Sunday, January 24, 2010
May 3, 2010 - 1:00pm
Day 8
Some days sure are busier than others. In the last hour Dr. Vo came in and spoke with us for a while about the procedure that is scheduled now for tuesday at about 10:00am and Ali went and got her renal scan, which compares the two kidneys and how much they are working - Ali's are 46% and 54% which is pretty close to normal, it will also show a clearer picture of each kidney and the arteries supplying them.
We spoke with Dr. Vo for awhile about the renal arteriogram, and possible angioplasty and renal vein sampling that he suggested doing tomorrow. A little nervous about the whole procedure but also hoping he can find and fix a problem to get Ali feeling better. He did mention that at her age and size of the artery branches there was about a 50/50 chance of finding a problem (if it is there). If he didn't find a problem he could fix with angioplasty then he would take a renal vein sampling (sampling of the blood coming out of each kidney) which will tell him how each kidney is working and whether one is elavated over the other. This could supply more evidence pointing toward renal artery stenosis and that at this point it may be just too small to see. If he could not find a problem that he could correct with angioplasty then we would continue to treat with medications and he would want to take another look in about a year when the arteries were a little bigger. He suggested doing this now rather than later after she has gone home for a while and has had her blood pressure under control for a bit with medications because he had expected a much more positive affect of the medications to this point and they are using 3 medications to get it to where it is at and possibly moving toward a 4th. We are nervous about tomorrow, yet hopeful it all goes well and Ali comes out of it much for the better.
Some days sure are busier than others. In the last hour Dr. Vo came in and spoke with us for a while about the procedure that is scheduled now for tuesday at about 10:00am and Ali went and got her renal scan, which compares the two kidneys and how much they are working - Ali's are 46% and 54% which is pretty close to normal, it will also show a clearer picture of each kidney and the arteries supplying them.
We spoke with Dr. Vo for awhile about the renal arteriogram, and possible angioplasty and renal vein sampling that he suggested doing tomorrow. A little nervous about the whole procedure but also hoping he can find and fix a problem to get Ali feeling better. He did mention that at her age and size of the artery branches there was about a 50/50 chance of finding a problem (if it is there). If he didn't find a problem he could fix with angioplasty then he would take a renal vein sampling (sampling of the blood coming out of each kidney) which will tell him how each kidney is working and whether one is elavated over the other. This could supply more evidence pointing toward renal artery stenosis and that at this point it may be just too small to see. If he could not find a problem that he could correct with angioplasty then we would continue to treat with medications and he would want to take another look in about a year when the arteries were a little bigger. He suggested doing this now rather than later after she has gone home for a while and has had her blood pressure under control for a bit with medications because he had expected a much more positive affect of the medications to this point and they are using 3 medications to get it to where it is at and possibly moving toward a 4th. We are nervous about tomorrow, yet hopeful it all goes well and Ali comes out of it much for the better.
Saturday, January 23, 2010
Ali's surgery
Just left Ali at surgery (for her arteriogram / angioplasty / renal vein sampling)... :( we'll know in a few hours how it went....
Friday, January 22, 2010
May 4, 2010 - 10:20am
Day 9
Surgery...
We just left Allison at surgery for her Arteriogram, possible angioplasty and renal vein sampling. A difficult morning for us... :( But we know she is in good hands and are as comfortable as we can be with Dr. Vo performing the procedure.... She is our little girl though...
The procedure... Dr. Vo will enter her artery at her left groin with a catheter and move up to her kidneys. He will inject some dye with this to help see the small artery branches and then take a few pictures to hopefully find where the artery branches are narrowing going into the kidney. If he cannot see any narrowing (it does not necessarily mean that it does not exist, there is still the possibility that it is just too small to see at her age. If he does not see any narrowing he will then enter a vein and go in backwards to the kidney to take some blood samples coming out of both kidneys to analyze further. If he does find some narrowing he will then perfom angioplasty to fix the area. Should take 2 to 3 hours. Difficult for us to leave Ali there, but she is in good hands and hopefully we will have some more positve news when it is all done.
We did hear this moring from Matt that the renal scan she had yesterday with the radioactive dye showed everything to be ok. It specifically was looking for any scaring on either kidney and kidney production.
Surgery...
We just left Allison at surgery for her Arteriogram, possible angioplasty and renal vein sampling. A difficult morning for us... :( But we know she is in good hands and are as comfortable as we can be with Dr. Vo performing the procedure.... She is our little girl though...
The procedure... Dr. Vo will enter her artery at her left groin with a catheter and move up to her kidneys. He will inject some dye with this to help see the small artery branches and then take a few pictures to hopefully find where the artery branches are narrowing going into the kidney. If he cannot see any narrowing (it does not necessarily mean that it does not exist, there is still the possibility that it is just too small to see at her age. If he does not see any narrowing he will then enter a vein and go in backwards to the kidney to take some blood samples coming out of both kidneys to analyze further. If he does find some narrowing he will then perfom angioplasty to fix the area. Should take 2 to 3 hours. Difficult for us to leave Ali there, but she is in good hands and hopefully we will have some more positve news when it is all done.
We did hear this moring from Matt that the renal scan she had yesterday with the radioactive dye showed everything to be ok. It specifically was looking for any scaring on either kidney and kidney production.
Thursday, January 21, 2010
May 4, 2010 - 1:00pm
Day 9
Surgery Results
Ali is out of surgery and did very well according to Dr. Vo. Although (unfortunately) he did not see anything out of the ordinary :( to fix. He did say her arteries were indeed very small at this age and it may just be too small to see. He will look over the pictures again later today, and then again in a day or two to see if anything jumps out at him that he may initially missed. He did take some blood samples of the blood coming out of the kidneys and those will be sent off to a lab for specialized testing - which will take a week or so for results... if this shows an unbalance in the kidney production it can isolate which kidney to really concentrate on in the future. Although the test is not always conclusive. So, he also said he was also very encouraged that when she was under the anesthesia that her blood pressure came right down, so it is something we should be able to control (we have also noticed it is down more when she has taken some benedryl at night to help sleep). He would like to see her again in a year - when she is 4 - as the vessels over that time seem to increase in size quite a bit and easier to diagnose.
Since we haven't got any concrete evidence that renal artery stenosis is indeed the cause of ALL of this I am a little skeptical that that has indeed caused all of this, but we have found nothing else, and they have put her through just about every test imaginable. There are certain things that have pointed toward renal artery stenosis (like the affect of captopril on her blood pressure), but they have not been able to see it at this time. We hope that at once we get her home she will be less stressed and her blood pressure will come down some anyway. We have been here long enough that every time a doctor or nurse walks in, or we go to another room (for some other test) she gets upset. I have read of other kids having similar symptoms at some of the medical forums online, with no one ever figuring out what was wrong (none that have gotten the extensive testing that Allison has) and after about 4 weeks the symptoms going away on their own and the kids returning to normal as well. Hopefully when we get home she will start to return to her normal bubbly self. I'll be encouraged when she gets her appetite back and begins to eat again, as of now she doesn't really want anything to do with food and we will have to continue to feed her with her NG tube... From time to time she still tells us that her tummy hurts. Hard to tell what kind of "hurt" as she can't really tell us - could just be a nauseous after her medications or could be something else. Anyway I hope she is well enough in a few days to go home and the comforts of home speed her recovery so we can have our little laughter machine back... :)
Surgery Results
Ali is out of surgery and did very well according to Dr. Vo. Although (unfortunately) he did not see anything out of the ordinary :( to fix. He did say her arteries were indeed very small at this age and it may just be too small to see. He will look over the pictures again later today, and then again in a day or two to see if anything jumps out at him that he may initially missed. He did take some blood samples of the blood coming out of the kidneys and those will be sent off to a lab for specialized testing - which will take a week or so for results... if this shows an unbalance in the kidney production it can isolate which kidney to really concentrate on in the future. Although the test is not always conclusive. So, he also said he was also very encouraged that when she was under the anesthesia that her blood pressure came right down, so it is something we should be able to control (we have also noticed it is down more when she has taken some benedryl at night to help sleep). He would like to see her again in a year - when she is 4 - as the vessels over that time seem to increase in size quite a bit and easier to diagnose.
Since we haven't got any concrete evidence that renal artery stenosis is indeed the cause of ALL of this I am a little skeptical that that has indeed caused all of this, but we have found nothing else, and they have put her through just about every test imaginable. There are certain things that have pointed toward renal artery stenosis (like the affect of captopril on her blood pressure), but they have not been able to see it at this time. We hope that at once we get her home she will be less stressed and her blood pressure will come down some anyway. We have been here long enough that every time a doctor or nurse walks in, or we go to another room (for some other test) she gets upset. I have read of other kids having similar symptoms at some of the medical forums online, with no one ever figuring out what was wrong (none that have gotten the extensive testing that Allison has) and after about 4 weeks the symptoms going away on their own and the kids returning to normal as well. Hopefully when we get home she will start to return to her normal bubbly self. I'll be encouraged when she gets her appetite back and begins to eat again, as of now she doesn't really want anything to do with food and we will have to continue to feed her with her NG tube... From time to time she still tells us that her tummy hurts. Hard to tell what kind of "hurt" as she can't really tell us - could just be a nauseous after her medications or could be something else. Anyway I hope she is well enough in a few days to go home and the comforts of home speed her recovery so we can have our little laughter machine back... :)
Wednesday, January 20, 2010
May 4, 2010 - 7:00 pm
Ali has done well since she got out of surgery, a lot of sleeping and watching movies in bed. We haven't spoken to her doctor yet to find out the plan after the results of the surgery, just that they are moving her toward a once a day medicine to control the blood pressure instead the 4 times a day she is on now. I am hoping to go home soon, if they aren't going to do any more besides tweak the medications for Ali, it was my understanding that we could do that on an outpatient basis... I think it would be good for Ali to be home as well. We have a roommate again, and I don't think I am ready to go through those distractions again :)
Ali is still not back on her feeding pump and still has a catheter in. She's not gonna be happy when that comes out... :) Orginally that should of happened about 6:30pm as well has her feeding pump to be hooked back up, so it should happen soon. Hoping for a good restfull night with blood pressures being down so we can go home soon...
Ali is still not back on her feeding pump and still has a catheter in. She's not gonna be happy when that comes out... :) Orginally that should of happened about 6:30pm as well has her feeding pump to be hooked back up, so it should happen soon. Hoping for a good restfull night with blood pressures being down so we can go home soon...
Tuesday, January 19, 2010
May 4, 2010 - 8:00 pm
So... Ali's feeding tube had migrated down about 6cm into her intestine so they had to pull it back up a little bit. Wasn't a big deal EXCEPT removing the tape that had it stuck to her cheek - didn't like that so much :( They also removed the catheter. She is now back to being fed through the tube and resting. I had thought we were going to migrate to just feeding her at night through the tube since that was the plan when we went home, although I guess we arent' doing that yet - just a continuous slow feed. Her blood pressure remains lower (117/77) about 10 higher on the upper and lower end but much better than when we arrived at the ER 9 days ago...
Monday, January 18, 2010
May 5, 2010 - 11:00 am
Day 10
Not much happening today. We were suppose to start her feeding just at night, but that hasn't happened yet, so Jennifer (with nutrition) was going to find out why and push for that getting started so when we go home that has already begun. I also asked during rounds this morning about removing her IV - and was told we could go ahead and do that... the nurse came in and said when she wakes up she would take it out. They pricked her finger this morning again to get some more blood to make sure the new medicines for blood pressure were not having any negative side affects. She slept better last night but still had periods of restlessness and sleeplessness. Her blood pressure was also good over night. Best guess is that we can maybe go home tomorrow evening or Friday and work toward her improving on an outpatient basis. The blood work to detect Pheochromo Cytoma which is a tumor that secretes a hormone that causes blood pressure to increase came back negative, so it looks like they have finally ruled that our for sure. From rounds this morning Dr. Daryl Okamura did mention that there were still a few anomalies that had come up with some of her tests. Nothing major just sounded like some things that that he didn't expect to see (or did expect and didn't), and he was digging into them more to see what more information he could find and to try and explain them. Overall Ali continues to be a bit of a mystery to them... Glad to see they are still digging a little trying to make sure to cover everything and explain as much as they can.
It's Cinco De Mayo! Someone have a couple for us! :)
Not much happening today. We were suppose to start her feeding just at night, but that hasn't happened yet, so Jennifer (with nutrition) was going to find out why and push for that getting started so when we go home that has already begun. I also asked during rounds this morning about removing her IV - and was told we could go ahead and do that... the nurse came in and said when she wakes up she would take it out. They pricked her finger this morning again to get some more blood to make sure the new medicines for blood pressure were not having any negative side affects. She slept better last night but still had periods of restlessness and sleeplessness. Her blood pressure was also good over night. Best guess is that we can maybe go home tomorrow evening or Friday and work toward her improving on an outpatient basis. The blood work to detect Pheochromo Cytoma which is a tumor that secretes a hormone that causes blood pressure to increase came back negative, so it looks like they have finally ruled that our for sure. From rounds this morning Dr. Daryl Okamura did mention that there were still a few anomalies that had come up with some of her tests. Nothing major just sounded like some things that that he didn't expect to see (or did expect and didn't), and he was digging into them more to see what more information he could find and to try and explain them. Overall Ali continues to be a bit of a mystery to them... Glad to see they are still digging a little trying to make sure to cover everything and explain as much as they can.
It's Cinco De Mayo! Someone have a couple for us! :)
Sunday, January 17, 2010
May 6, 2010 - 10:45 am
Day 11
Going home today? We hope. We met with the doctors this morning and it looks like we may be going home today. Ali did have a rough night last night, was not comfortable and did not sleep. We did start feeding her at night - which meant a higher feed rate which may have contributed to her tummy aching a little. We will speak with the nutritionist - Jennifer - more today (she did stop by this morning) and get our official training on the feed pump (at 2:00pm) then hopefully everyone will be in agreement and we can get out of here and see how she does at home. Matt (Mathew Sullivan - her primary dr.) spoke with us for a bit this morning and was apologetic and let us know he was frustrated and disappointed he could not give us some more concrete answers. He wanted to keep in touch and definately if she seemed to remain uncomfortable and doesn't seem to be bouncing back now that her blood pressure seems to be under control to follow up and not let it go too long. We will monitor her blood pressures and the amount she eats (when she starts eating) to report back here to the hospital and they will work with us on changing feed rates and medications if necessary. It kinda feels like we are back where we started as she seems to be uncomfortable again, but they have gone over about everything here and her blood pressure is much more under control. Hopefully getting out of here and getting home she will be more comfortable and feel better. Ali finally wants to go home (for a while she said she wanted to stay here...) Most everyone here has been great, disappointing we still don't have concrete answers as to what was going on, but she does seem to be better and hopefully will keep going that direction.
Going home today? We hope. We met with the doctors this morning and it looks like we may be going home today. Ali did have a rough night last night, was not comfortable and did not sleep. We did start feeding her at night - which meant a higher feed rate which may have contributed to her tummy aching a little. We will speak with the nutritionist - Jennifer - more today (she did stop by this morning) and get our official training on the feed pump (at 2:00pm) then hopefully everyone will be in agreement and we can get out of here and see how she does at home. Matt (Mathew Sullivan - her primary dr.) spoke with us for a bit this morning and was apologetic and let us know he was frustrated and disappointed he could not give us some more concrete answers. He wanted to keep in touch and definately if she seemed to remain uncomfortable and doesn't seem to be bouncing back now that her blood pressure seems to be under control to follow up and not let it go too long. We will monitor her blood pressures and the amount she eats (when she starts eating) to report back here to the hospital and they will work with us on changing feed rates and medications if necessary. It kinda feels like we are back where we started as she seems to be uncomfortable again, but they have gone over about everything here and her blood pressure is much more under control. Hopefully getting out of here and getting home she will be more comfortable and feel better. Ali finally wants to go home (for a while she said she wanted to stay here...) Most everyone here has been great, disappointing we still don't have concrete answers as to what was going on, but she does seem to be better and hopefully will keep going that direction.
Saturday, January 16, 2010
May 6, 2010 - 8:00pm
Day 11
We made it home! :) Ali is still not feeling well, but we all hope being at home and more comfortable will do her some good. Her blood pressure does seem to be under control, and they tell us it may take a few days before her body adjusts and then she should start to bounce back. We sure hope so! She still has the feeding tube so we will be feeding her throughout the night that way for probably a few days, then disconnecting it during the day until she gets all of her appetite back (hopefully just a few days). Although since we have been home she has had a little string cheese and some cottage cheese too. It's a start! :) She didn't want her feeding tube hooked back up tonight - so maybe that will be some incentive for her to get back on track eating :) She is still irritable and definitely not the old Allison. We hope that over the next few days she will begin to return to herself. We have a follow up with her pediatrician on Monday. Hopefully she'll be back to showing signs of her old self by then. We would like to thank everyone for their thoughts and prayers and help - they are greatly appreciated. We'll still try to keep up the blog until we are convinced she is over this. Thanks again to everyone! It is good to be back home! :)
We made it home! :) Ali is still not feeling well, but we all hope being at home and more comfortable will do her some good. Her blood pressure does seem to be under control, and they tell us it may take a few days before her body adjusts and then she should start to bounce back. We sure hope so! She still has the feeding tube so we will be feeding her throughout the night that way for probably a few days, then disconnecting it during the day until she gets all of her appetite back (hopefully just a few days). Although since we have been home she has had a little string cheese and some cottage cheese too. It's a start! :) She didn't want her feeding tube hooked back up tonight - so maybe that will be some incentive for her to get back on track eating :) She is still irritable and definitely not the old Allison. We hope that over the next few days she will begin to return to herself. We have a follow up with her pediatrician on Monday. Hopefully she'll be back to showing signs of her old self by then. We would like to thank everyone for their thoughts and prayers and help - they are greatly appreciated. We'll still try to keep up the blog until we are convinced she is over this. Thanks again to everyone! It is good to be back home! :)
Friday, January 15, 2010
May 7, 2010 - 8:45 pm
Ali didn't sleep much last night :( I don't think either of us is convinced that she is "over" what ever is making her miserable - hopeful - but not necessarily convinced. The next few days will give us a better idea. She still complains occasionally that her tummy hurts, seems like after she eats it bothers her the most. She did play for a few brief periods today, but just doesn't have a whole lot of energy. Grandma even got her to go outside for awhile while I mowed the lawn. She didn't do much except lay on a blanket on the patio, but she did get some fresh air... She also made it out to Sydney's soccer game this evening - mostly slept on Megan lap - but did get out of the house. Let's see... I did get her to eat 3-4 bites of macaroni and cheese on two separate occasions today, not much but she did willing eat something. She just isn't herself, and we think it is more than she just needs to recover and re acclimate to a lower blood pressure. If she isn't showing a lot more improvement by Monday when we have an appointment with her pediatrician we are going to look into our next options for getting additional help, and a 2nd opinion. Which probably means something out of state, at another major children's hospital. We are hopeful over the weekend we see significant improvement and we can get over this but as of yet we really aren't 100% sure she is over what ever is bothering her.
Thursday, January 14, 2010
May 9, 2010 - 9:15pm
Well it has been 3 days now since we have been home from the hospital and Ali really hasn't improved like we had hoped... :( She has shown some glimpses but honestly we were expecting more. She still doesn't really eat. Saturday I got her to eat one chicken nugget and a bite of cottage cheese. Today she had few bites of cottage cheese, a few bites of pork roast, some m&m's and a few sips of water.... Not really what we had hoped for. So needless to say she still has her feeding tube in which we have to connect her to her pump every night and feed her for 14 hours throughout the night. She does perk up here and there throughout the day which we are glad to see, but it never really seems to last all that long before something will agitate her and she will begin whining, or she just seems to get tired. Also she shows no desire to get up and walk anywhere on her own. She will if we make her, but not on her own since friday when she walked across the room to see some of Sydney's new dolls. Her blood pressure is also still not down to a normal 3 year old level which I believe is pretty close to 105/65. Her's are for the most part probably average around 115/75, and she is on two blood pressure medications for it - Lisanopril (2.5ml once a day) and Amlodipine (2.5 ml twice a day). And sleeping - well she still does not sleep at night which means we for the most part don't sleep at night. She probably averaged about 4- 6 hours of sleep a night. And that is not all at once - a couple hours to start and then one or two her and one or two there... She has an appointment with her pediatrician on monday, so we will talk with her to see what more we can do - there is something that has been missed.... And we really need to find it......................
Wednesday, January 13, 2010
May 10, 2010 - 7:45 pm
Today I would have to say was a better day. Last night wasn't so good as she hardly slept and seemed to be very uncomfortable for most of the night. Up to her old tricks of asking to be moved all around the house - the couch - the chair - downstairs - her bed - back to the couch... just not comfortable :( This morning didn't start out so good either I guess. Megan had decided it was time to take off the tape covering her incision on her groin from her surgery - ouch! ouch! ouch! but it did need to come off. She has a nice big bruise there from the surgery as well. You would think they could find a different way to cover it than just tape on skin! She then was off to the bath - which she didn't really care for either. She has a band aid (or two) on her hand that had the IV in it, and she is very protective of it. You better not even look at it like you want to take it off or she will throw a fit! The band aid is just barely hanging on still and she is constantly worrying about it trying to re stick it on her hand... We had hoped a bath and it would just come off - although she would have nothing to do with getting that hand anywhere near the water! She gets so upset at even the idea of it coming off we have all changed our approach and protect it with her, although she doesn't want a replacement or any tape on it to help hold it on...
She did have a Dr. appointment today and we had a long conversation with one of her doctors, about options to look into next and different ideas. Ali of course got a once over and discovered she has lost about half a pound since we left Seattle Children's Hospital last Thursday. Also the tape on her cheek that keeps her NG (feeding) tube in place at her nose needed replaced, so we did that while there as well - not a pleasant experience for her - but she sucked it up soon after we got started with it - as it took 3 of us to to do and she ended up doing fairly well - considering. She got her blood drawn again - to check to see that her meds where not having any adverse effects on her, blood pressure taken, ears and mouth looked at, chest and back listened too, stomach poked a little, etc etc... We discussed options for a 2nd opinion and her pediatrician agreed this was a good thing. She was going to call Doernbecher Children's Hospital in Portland to speak with them about specifics of an MRI which we may have done and give them a heads up about her since we may be going down there - and if they are in on the MRI early it would be what they wanted instead of possibly doing it again. Meg and I have not decided for sure where to head for a 2nd opinion but Portland is a possibility.
So I started off "Today I would have to say was a better day." so I am sure you are wondering when does it get better? Ali did have about 5 bites of a waffle for breakfast, and after her Dr. appointment she had some cottage cheese and some Dora Chicken noodle soup with me for lunch! And for dinner... she actually had quite a bit of hamburger stroganoff and even some broccoli off of dad's plate :) At lunch we played some as she tickled me during lunch and we have played some tickle games this evening as well. I guess this morning she even got off the couch and wandered down the hall to find Megan in the shower! After I got home from work she wanted in her stroller so we took a walk around the nearby park. She still gets agitated easily at times, and at times hard to figure out why, but she has had quite a few good moments today. We try not to get too excited as the ride has definitely been a roller coaster and as soon as we think she is coming back it seems she has a setback and takes a step backward, but every little glimmer does give us hope :) Just hope sleeping patterns change soon! :)
She did have a Dr. appointment today and we had a long conversation with one of her doctors, about options to look into next and different ideas. Ali of course got a once over and discovered she has lost about half a pound since we left Seattle Children's Hospital last Thursday. Also the tape on her cheek that keeps her NG (feeding) tube in place at her nose needed replaced, so we did that while there as well - not a pleasant experience for her - but she sucked it up soon after we got started with it - as it took 3 of us to to do and she ended up doing fairly well - considering. She got her blood drawn again - to check to see that her meds where not having any adverse effects on her, blood pressure taken, ears and mouth looked at, chest and back listened too, stomach poked a little, etc etc... We discussed options for a 2nd opinion and her pediatrician agreed this was a good thing. She was going to call Doernbecher Children's Hospital in Portland to speak with them about specifics of an MRI which we may have done and give them a heads up about her since we may be going down there - and if they are in on the MRI early it would be what they wanted instead of possibly doing it again. Meg and I have not decided for sure where to head for a 2nd opinion but Portland is a possibility.
So I started off "Today I would have to say was a better day." so I am sure you are wondering when does it get better? Ali did have about 5 bites of a waffle for breakfast, and after her Dr. appointment she had some cottage cheese and some Dora Chicken noodle soup with me for lunch! And for dinner... she actually had quite a bit of hamburger stroganoff and even some broccoli off of dad's plate :) At lunch we played some as she tickled me during lunch and we have played some tickle games this evening as well. I guess this morning she even got off the couch and wandered down the hall to find Megan in the shower! After I got home from work she wanted in her stroller so we took a walk around the nearby park. She still gets agitated easily at times, and at times hard to figure out why, but she has had quite a few good moments today. We try not to get too excited as the ride has definitely been a roller coaster and as soon as we think she is coming back it seems she has a setback and takes a step backward, but every little glimmer does give us hope :) Just hope sleeping patterns change soon! :)
Tuesday, January 12, 2010
May 12, 2010 - Back to Seattle Children's Hospital
Sigh... well we are back at Seattle Children's Hospital. We came up this evening, got here about 7:00 pm. We are back because Ali has not shown the progress since returning home that we had hoped to see. Her blood pressure is still not down to normal, she is not eating much at all still, and definitely not sleeping very much. At her appointment on Monday with her pediatrician she had lost another 0.5 pounds since we had returned home last Thursday. She has shown some improvement but not near what anyone expected. After speaking with Children's Hospital about her progress they wanted to see her again to find out why she is not well.
The plan here this time is to be here until they find answers. Tomorrow starts off with an MRI and neurology getting involved, then based on what the results of that show (or don't show) we will move on to some other testing. The gastrointestinal group may then get involved to find out why she has seemingly had stomach pain for so long that comes and goes.
We have our own room this time around and it will remain that way :) It already seems more comfortable. We also have the same Dr (Matthew Sullivan) looking after her and organizing everyone else to come in and have a look until we find something. We like him and are comfortable with him so it is nice to have him on board because he has seen Allison since we came here to the ER back on April 26th and has seen much of her symptoms and progression.
It's a much different feeling this time around. Since Ali has shown some improvement I am wondering if we just need more time - and maybe not subject her to these additional tests. Although her frequent mood swings, lack of eating (for about a month now) and lack of any significant sleep at night has us wanting (needing) some answers and direction for improvement. If we had some answers it would be much easier - I think, but not knowing anything except that she is miserable a large portion of the day is very exhausting. Over the last few days she has slept a little better at night. It doesn't seem like she is in as much pain as she has been in the past - but enough to be uncomfortable and awake - way more than she should be. We are hoping things are lined up here and we find something out A LOT sooner than the 11 days we were here last....
Thankfully my mom is still here and is at home with Sydney. It has been great having her at the house, even if it's just for the little bit she can entertain Ali throughout the day so Meg can have a few minute break while I am off at work, or making dinner or whatever. Every little bit has helped a lot.
Well tomorrow will bring some new information and hopefully closer to finding what is going on...
The plan here this time is to be here until they find answers. Tomorrow starts off with an MRI and neurology getting involved, then based on what the results of that show (or don't show) we will move on to some other testing. The gastrointestinal group may then get involved to find out why she has seemingly had stomach pain for so long that comes and goes.
We have our own room this time around and it will remain that way :) It already seems more comfortable. We also have the same Dr (Matthew Sullivan) looking after her and organizing everyone else to come in and have a look until we find something. We like him and are comfortable with him so it is nice to have him on board because he has seen Allison since we came here to the ER back on April 26th and has seen much of her symptoms and progression.
It's a much different feeling this time around. Since Ali has shown some improvement I am wondering if we just need more time - and maybe not subject her to these additional tests. Although her frequent mood swings, lack of eating (for about a month now) and lack of any significant sleep at night has us wanting (needing) some answers and direction for improvement. If we had some answers it would be much easier - I think, but not knowing anything except that she is miserable a large portion of the day is very exhausting. Over the last few days she has slept a little better at night. It doesn't seem like she is in as much pain as she has been in the past - but enough to be uncomfortable and awake - way more than she should be. We are hoping things are lined up here and we find something out A LOT sooner than the 11 days we were here last....
Thankfully my mom is still here and is at home with Sydney. It has been great having her at the house, even if it's just for the little bit she can entertain Ali throughout the day so Meg can have a few minute break while I am off at work, or making dinner or whatever. Every little bit has helped a lot.
Well tomorrow will bring some new information and hopefully closer to finding what is going on...
Monday, January 11, 2010
May 13, 2010 - 10:30am
This morning we found out that the MRI is scheduled at 3:30pm today - or if something should open up between now and then we would go sooner. We got news we were moving to a new room this morning from floor 4 to floor 3 - ugh... But after making the move we actually upgraded somewhat - a relief not a shared room.. :) Ali got an IV put in last night and also a whole bunch of blood drawn for more tests - some tests they have already done just to double check and see if anything has changed and some new ones too. So far the tests results that have come back are of course normal...
Ali did not sleep much at all last night so of course this morning she is pretty cranky and whiny. I guess understandable being back in the hospital, and probably being somewhat anxious. The team has not come around yet but we hope we are going to be pro active today and maybe do some other testing while waiting for the MRI, instead of just sitting around all day to have that done and see what it brings. Waiting to move on after the results of that are known, but we will see in a bit what the whole plan is for today.
Ali did not sleep much at all last night so of course this morning she is pretty cranky and whiny. I guess understandable being back in the hospital, and probably being somewhat anxious. The team has not come around yet but we hope we are going to be pro active today and maybe do some other testing while waiting for the MRI, instead of just sitting around all day to have that done and see what it brings. Waiting to move on after the results of that are known, but we will see in a bit what the whole plan is for today.
Sunday, January 10, 2010
MRI - 4:30 pm
Just left Ali for her MRI.... Should be about half an hour and then a little bit to wake up from the anestesia....
-- Eric....
Sent from my Palm Pre.
Sent from my Palm Pre.
Saturday, January 9, 2010
May 13, 2010 - 10:00pm
Well the MRI apparently went well - although we have not heard any results from it yet and don't know when we may. I am hoping to find out more when we meet with the team during their rounds tomorrow morning. At least to find out what the plan is to be. Today has been waiting for the MRI and now apparently waiting for the results... So nothing new today. Ali does not like anyone who appears to be a doctor or nurse... so anytime they come in to talk or to get vitals etc, she gets pretty upset - unless of course she happens to be snoozing at the time. Pretty much an uneventful day today, hopefully tomorrow with bring some news. We really don't want to be sitting around here just to sit around here.
Friday, January 8, 2010
May 14, 2010 - 12:15am
Ali's blood pressure seems to jump all over the place. One minute you can take it and it will be 128/72
and 10 minutes later it will be 108/64.... :( The doctors have decided again that 120/80 is the threshold and more than that means a 3rd blood pressure medication (isradipine)...Tonight her blood pressure had been flirting with the 120's (taken on her leg) so the nurse mentioned that if it wasn't down by about midnight that the doctor had said to give the isradipine. Well Ali true to form was up at about 11:00 pm rolling around and being very uncomfortable... until about 11:25 pm or so. Then fell back asleep... so of course the nurse came in about 11:35 pm to take her blood pressure and .. 128/72 - off to get the isradipine. They had also begun taking her blood pressure on her leg, other than her arm... Well the 128/72 didn't sit well with me and I really don't want her taking another blood pressure medication. So about 10 minutes after he had left I took her blood pressure around her left arm... 108/64 - Normal BP for a 3 year old! So when the nurse came back about 20 minutes after that I talked to him about it and he took it again to verify and 111/50 - no isradipine tonight :) More and more I associate her high blood pressure with her being in pain. 10 minutes before the high blood pressure was taken - she was definitely Uncomfortable! After then sleeping for 20 to 30 minutes it was down to normal... coincidence? If her blood pressure always jumps so much by her pain and anxiety level it is always going to be high while in the hospital, as everyone (dr. or nurse) that comes in upsets her... She has been sleeping soundly for about an hour now... hoping it lasts another 7 or 8 :) ...............
and 10 minutes later it will be 108/64.... :( The doctors have decided again that 120/80 is the threshold and more than that means a 3rd blood pressure medication (isradipine)...Tonight her blood pressure had been flirting with the 120's (taken on her leg) so the nurse mentioned that if it wasn't down by about midnight that the doctor had said to give the isradipine. Well Ali true to form was up at about 11:00 pm rolling around and being very uncomfortable... until about 11:25 pm or so. Then fell back asleep... so of course the nurse came in about 11:35 pm to take her blood pressure and .. 128/72 - off to get the isradipine. They had also begun taking her blood pressure on her leg, other than her arm... Well the 128/72 didn't sit well with me and I really don't want her taking another blood pressure medication. So about 10 minutes after he had left I took her blood pressure around her left arm... 108/64 - Normal BP for a 3 year old! So when the nurse came back about 20 minutes after that I talked to him about it and he took it again to verify and 111/50 - no isradipine tonight :) More and more I associate her high blood pressure with her being in pain. 10 minutes before the high blood pressure was taken - she was definitely Uncomfortable! After then sleeping for 20 to 30 minutes it was down to normal... coincidence? If her blood pressure always jumps so much by her pain and anxiety level it is always going to be high while in the hospital, as everyone (dr. or nurse) that comes in upsets her... She has been sleeping soundly for about an hour now... hoping it lasts another 7 or 8 :) ...............
Thursday, January 7, 2010
May 14, 2010 - 9:45 am
So Matt came in this morning and we discussed the MRI. The MRI ruled out a bunch of stuff (like most the other tests :) He said it did show something around some of the ventricles in the brain - he then said this may or may not be anything - but something to follow up on definitely. He said it could be an indicator that something is going on metabolically with her. Like maybe some sort of enzyme deficiency, or some heavy metals in her system, or something metabolic.... So the MRI did not show anything else - no masses or anything like that. There will be some follow up with that - some that are already in the works as he said they had a BUNCH of blood tests out that we were waiting results on. The took additional blood when she was out for the MRI. Also last night they wanted a urine sample and were going to "bag her" (attach a bag down there to catch some - which is taped to stay in place) I suggested on waiting and giving us a chance to get one by having her go in the toilet... Well we got her to go in the toilet and got a sample! So another discomfort averted :)
When Matt stopped by this moring Ali and I were playing "Monster" :) he just stayed in the corner and watched for a while... When Ali finally noticed him, she was actually ok with him there and I got her to say hi to him. He said it was nice to see what her personality was like before all of this :) I think now Matt has just about seen at one time or another all phases of Ali :)
She did actually sleep better last night - still up at 11:00 pm rolling around and in discomfort but went back to sleep for a couple hours before repeating the cycle a couple more times - but she definitly slept more last night than she was awake :)
I am sure I forgot something we discussed with Matt this moring but rounds are coming and we will go over it again.. Also I am going to ask if we can get her disconnected from some of her stuff (heart rate monitor, oxygen level monitor, feeding tube line, IV) it all makes for a tangled mess the way she moves around... And a whole lot easier to get her up and maybe walking a bit if she isn't all tangled up :) Hoping we can atleast disconnect the IV too - keeping it in her hand just in case they need it... We'll see. It is kinda interesting to look at her patterns on the monitor verses when she is agitated and is relaxed - but the constant tangling I could do with out :)
Ok I'll try and absorb some more after rounds and update a bit later... Since Ali has been up today about 8:00am she has been in a relatively good mood :) once or twice her tummy hurting a little but got through it without any episodes... Maybe she just needed an MRI to zap her back to normal lol. Crossing our fingers we see more of this....
When Matt stopped by this moring Ali and I were playing "Monster" :) he just stayed in the corner and watched for a while... When Ali finally noticed him, she was actually ok with him there and I got her to say hi to him. He said it was nice to see what her personality was like before all of this :) I think now Matt has just about seen at one time or another all phases of Ali :)
She did actually sleep better last night - still up at 11:00 pm rolling around and in discomfort but went back to sleep for a couple hours before repeating the cycle a couple more times - but she definitly slept more last night than she was awake :)
I am sure I forgot something we discussed with Matt this moring but rounds are coming and we will go over it again.. Also I am going to ask if we can get her disconnected from some of her stuff (heart rate monitor, oxygen level monitor, feeding tube line, IV) it all makes for a tangled mess the way she moves around... And a whole lot easier to get her up and maybe walking a bit if she isn't all tangled up :) Hoping we can atleast disconnect the IV too - keeping it in her hand just in case they need it... We'll see. It is kinda interesting to look at her patterns on the monitor verses when she is agitated and is relaxed - but the constant tangling I could do with out :)
Ok I'll try and absorb some more after rounds and update a bit later... Since Ali has been up today about 8:00am she has been in a relatively good mood :) once or twice her tummy hurting a little but got through it without any episodes... Maybe she just needed an MRI to zap her back to normal lol. Crossing our fingers we see more of this....
Wednesday, January 6, 2010
May 14, 2010, 2:15 pm - Headed home again...
So Neurology came in and discussed her MRI with us. Although it was a little abnormal, with some elevated signal around her ventricles they were not too concerned about it. Suggesting that it very well could of been caused by her high blood pressure and or blood pressure medication. And as long as it didn't seem to us that she was degenerating with anything (stumbling when walking or loosing coordination, etc) - which she has not... they were not concerned. So since Neurology was ok with us going home - We are :) too. We have a follow up appointment with nephrology next Thursday anyway, so we can catch them up on her progress then. And they still have a whole bunch of blood tests that the results of will be trickling in over the next week or so so they will have some of those results by Thursday as well just in case anything comes up... We are good with this - especially since last night was one of her better nights and today has definitely been a better day for her... maybe we just need to be prepared for baby steps... :) She is asking to go to Abby's (Carter) house too :) So she has shown some interest in food the last day or so and interest in playing as well, which is an improvement, so everybody cross your fingers, pray and hope that the process is heading in the right direction and in time she will get back to her usually happy self....
Tuesday, January 5, 2010
May 15, 2010 - 9:00 pm
It's been a long day... Once again Ali didn't sleep at all last night :( Maybe a few hours if you add up a little her a little there... She then did fall asleep on my lap at about 6:30am for about an hour on the couch. One nap for about 45 minutes around 12:30pm. We decided to not let her sleep at anytime after 3:00 pm in hopes that she would be sooo tired she would sleep tonight - we'll see. We did put her to bed in her be at about 8:00pm and she did fall asleep pretty quick.
She has definitely had her ups and downs today... She does get up and walk around more - but it does wear her out. And she does show some interest here and there in playing throughout the day, but there are plenty of times she snaps back and reverts to crying - over really nothing that we can tell. We got her out of the house today to go look for a new bed for her, but we were in the store about 2 minutes and she was crying that she wanted to go home...
She did have some soup for lunch and she had some string cheese and some jello for a snack. Dinner on the other hand was a fight... Although in the end I persuaded her into having some more soup - which she actually had quite a few bites of, surprisingly. I felt bad really fighting her to eat - but she NEEDS to eat. Her pain or discomfort or just mood change comes and goes which is a little frustrating. Encouraging to see her playing and walking around the house, and then deflating to see her wining and crying the next minute, apparently because whatever is bothering her as come back and she all the sudden feels lousy again. And we still haven't been able to get any explanation of why... Baby steps... we keep reminding ourselves she does appear to be better in some areas lately so maybe she is coming around - just very slowly...
She has definitely had her ups and downs today... She does get up and walk around more - but it does wear her out. And she does show some interest here and there in playing throughout the day, but there are plenty of times she snaps back and reverts to crying - over really nothing that we can tell. We got her out of the house today to go look for a new bed for her, but we were in the store about 2 minutes and she was crying that she wanted to go home...
She did have some soup for lunch and she had some string cheese and some jello for a snack. Dinner on the other hand was a fight... Although in the end I persuaded her into having some more soup - which she actually had quite a few bites of, surprisingly. I felt bad really fighting her to eat - but she NEEDS to eat. Her pain or discomfort or just mood change comes and goes which is a little frustrating. Encouraging to see her playing and walking around the house, and then deflating to see her wining and crying the next minute, apparently because whatever is bothering her as come back and she all the sudden feels lousy again. And we still haven't been able to get any explanation of why... Baby steps... we keep reminding ourselves she does appear to be better in some areas lately so maybe she is coming around - just very slowly...
Monday, January 4, 2010
May 19, 2010 - A new approach...
The last few days everything has been about the same for Ali... No sleep at night and not a whole lot of interest in food during the day :( Yesterday was not a very good day at all. Ali was cranky most of the day without really any significant breaks where she seemed to feel better, not much playing or interest in anything but to be cranky. And of course nights are still a challenge - although by now it has become our routine.
Today we had an appointment for Ali for Nutrition Response Testing (some information about that here: http://www.nutritionalwellnesscenter.com/nrt.html . Through this process it was determined that she has an intestinal/stomach yeast infection called candida. First time anyone has had an idea of what the heck is going on with her! :) We are following up with this (of course) and are starting her on some natural supplements to get her over this. Everything I have read about this so far is that it is something that will take some time to get over totally, but hopefully show some improvement soon :) We still have a follow up tomorrow with Seattle Children's Hospital, at 11:20am, and friday with her pediatrician to discuss what other options and direction we may have. We are interested in what they both may think about the analysis that she has a candida infection....
Today we had an appointment for Ali for Nutrition Response Testing (some information about that here: http://www.nutritionalwellnesscenter.com/nrt.html . Through this process it was determined that she has an intestinal/stomach yeast infection called candida. First time anyone has had an idea of what the heck is going on with her! :) We are following up with this (of course) and are starting her on some natural supplements to get her over this. Everything I have read about this so far is that it is something that will take some time to get over totally, but hopefully show some improvement soon :) We still have a follow up tomorrow with Seattle Children's Hospital, at 11:20am, and friday with her pediatrician to discuss what other options and direction we may have. We are interested in what they both may think about the analysis that she has a candida infection....
Sunday, January 3, 2010
May, 20, 2010
We had a follow up with Seattle Children's Hospital (Nephrology Dept) today, and here is what came out of that.... We found out that the tests for renin (http://en.wikipedia.org/wiki/Renin) levels coming out of the kidneys came back showing high levels coming out of both kidneys... which does support the kidney's causing the high blood pressure. It was also concluded that the blood pressure was under control with the medications and the fact that her other symptoms were not going away that we needed some more discovery. The plan from Children's is to have neurology, gastroenterology, infectious disease, and metabolic departments get involved. Dr. Smith (who we met with today) is going to speak to all of these specialties, have them go over Allison's case, and come up with some recommendations. Then get a plan together and organize all this to either do as an inpatient (again) or possibly as an outpatient, take all the blood everyone needs at one time and get everyone that needs to see her to see her. But before this begins to get everyone on board and with a plan. Some specific tests will take some time to get back, but to get the ball rolling. Also we have an appointment with Allison's pediatrician Friday afternoon to discuss everything that has gone on with Allison and discuss any ideas or suggestions that her pediatrician may have. Dr. Judy Smith (from children's) said she would call us this weekend after speaking to the other departments with an updated plan. We are definitely looking at the possibility of doing this as an outpatient. Ali would rather not be back at the Hospital... Either would we, but we will go over a few different plans and decide what to do next hopefully by Monday or Tuesday. Allison has been doing ok today as she has had a few periods of wanting to play and except for the car ride back and forth to Seattle has been sitting on the couch watching "kids shows".
Saturday, January 2, 2010
May 21, 2010 - 9:00 pm
Ali is pretty much the same.... We met with her pediatrician today to catch them up on how Ali is currently doing and to go over again just about everything. Dr. Lindgren (Ali's pediatrician) has been in contact with Seattle Children's Hospital trying to figure out what to do next and to throw ideas out at them. No new news really today. Judy Smith (the Dr. we saw at Children's on Thursday) called and has set up an appointment with GI (gastrointestinal) here in Olympia at a Seattle Children's Hospital outreach clinic for next Wednesday and is still working on scheduling something with infectious diseases, neurology, and metabolic groups. Meg and I have settled in to the routine for the most part by now, of course it is still hard to deal with not knowing anything and seeing Ali be like this for so long. She did eat quite a bit of soup this morning - but not interested in anything at all the rest of the day... Nights are still the toughest as she seems to be the most uncomfortable then... She does not like being hooked up to her feeding pump at night, but after a few minutes of explaining to her why she "lets" me do it :( She is such a tough kid... I can't imagine going through what she has for this long.... :( It is definitely affecting her and she is cranky at times just because she doesn't feel well - although I don't think I would be handling it near as well as she is. At times it really looks like she is consciously fighting whatever this is.
Friday, January 1, 2010
May 31, 2010
Well it's been a while since any updates, because well, there hadn't been any updates.
So lets see if I can recap the last 10 days... Last Thursday and Friday we had appointments up at children's Hospital. Thursday with gastroenterology, Friday with biochemical (metabolic), and then a bit later with Neurology. These appointments involved, going over "the story" again (and again) and getting the Doc's familiar with Ali. Then before leaving stopping by the lab and Ali donating a whole bunch of blood for more tests for everyone... The plan is for everyone then to get together and come up with some sort of plan early this week - although it may be a little longer before alot of the blood work come back. Dr. Suskin (GI) didn't seem to think a whole lot was going on that he could help with - although he did mention a possible endoscopy to make sure if things didn't improve. He was going to come of up some ideas to try and get her to eat. Sounded like just removing the NG tube he thought may help - the other Dr's seem to agree so maybe that will come out in a few days. If she didn't start eating enough with just that it sounded like we would try a drug (can't remember the name) that would try to get her appetite going, if that didn't do much we would try a steriod - if still not much then the tube would go back in - monitoring her weight through all this to ensure she isn't losing too much. We should hear from him tuesday or wednesday. Biochemical would be looking for a a bunch of things in her blood to see if they could find ANYTHING out of balance. They also took a complete family history to see if anything there would tie in - but initially no "light bulbs came on". Neurology was still ok with her in that they didn't see anything that would alarm them... although they did want to some time down the road take another MRI and compare what they saw a few weeks ago with the new one to see if anything had changed.
In the mean time we decided friday night to not hook her up to her feed pump and see what happens... since then she has been eating some... I don't think enough - but A LOT more than before. We'll check her weight Tuesday and see how she is doing. She does eat at breakfast, lunch and dinner - varying amounts but she is eating! She had also been sleeping fairly well (for her) since last Tuesday or Wednesday night. Waking up throughout the night but able to go back to sleep fairly soon... not up for hours. Although last night she was up again more than she slept! And so was dad :( She does get up and move around the house quite a bit, but seems to get run down and gets whiny and heads to the couch. I am not quite sure what we are going to do with her medicines after the tube comes out... as she won't take all of them by mouth.. :( Her blood pressures have been under control in the 1 teens over 70's. But man she is MOODY - side affect of the medications????????? We would very much like to get her off of everything - although her blood pressure needs to come down still to do that...
She is sooo much better than a few weeks ago, but still has a ways to go to get back to the bouncy 3 year old she should be... Baby steps..... Her moodiness is getting to be trying, but we are all still hangin in there. I hope last night was not the norm again with her sleeping and she starts getting some more rest. She complains a lot about her back hurting these days. Not sure why, might just be all the couch time - but it seems to keep her up at night and uncomfortable throughout the day...
So lets see if I can recap the last 10 days... Last Thursday and Friday we had appointments up at children's Hospital. Thursday with gastroenterology, Friday with biochemical (metabolic), and then a bit later with Neurology. These appointments involved, going over "the story" again (and again) and getting the Doc's familiar with Ali. Then before leaving stopping by the lab and Ali donating a whole bunch of blood for more tests for everyone... The plan is for everyone then to get together and come up with some sort of plan early this week - although it may be a little longer before alot of the blood work come back. Dr. Suskin (GI) didn't seem to think a whole lot was going on that he could help with - although he did mention a possible endoscopy to make sure if things didn't improve. He was going to come of up some ideas to try and get her to eat. Sounded like just removing the NG tube he thought may help - the other Dr's seem to agree so maybe that will come out in a few days. If she didn't start eating enough with just that it sounded like we would try a drug (can't remember the name) that would try to get her appetite going, if that didn't do much we would try a steriod - if still not much then the tube would go back in - monitoring her weight through all this to ensure she isn't losing too much. We should hear from him tuesday or wednesday. Biochemical would be looking for a a bunch of things in her blood to see if they could find ANYTHING out of balance. They also took a complete family history to see if anything there would tie in - but initially no "light bulbs came on". Neurology was still ok with her in that they didn't see anything that would alarm them... although they did want to some time down the road take another MRI and compare what they saw a few weeks ago with the new one to see if anything had changed.
In the mean time we decided friday night to not hook her up to her feed pump and see what happens... since then she has been eating some... I don't think enough - but A LOT more than before. We'll check her weight Tuesday and see how she is doing. She does eat at breakfast, lunch and dinner - varying amounts but she is eating! She had also been sleeping fairly well (for her) since last Tuesday or Wednesday night. Waking up throughout the night but able to go back to sleep fairly soon... not up for hours. Although last night she was up again more than she slept! And so was dad :( She does get up and move around the house quite a bit, but seems to get run down and gets whiny and heads to the couch. I am not quite sure what we are going to do with her medicines after the tube comes out... as she won't take all of them by mouth.. :( Her blood pressures have been under control in the 1 teens over 70's. But man she is MOODY - side affect of the medications????????? We would very much like to get her off of everything - although her blood pressure needs to come down still to do that...
She is sooo much better than a few weeks ago, but still has a ways to go to get back to the bouncy 3 year old she should be... Baby steps..... Her moodiness is getting to be trying, but we are all still hangin in there. I hope last night was not the norm again with her sleeping and she starts getting some more rest. She complains a lot about her back hurting these days. Not sure why, might just be all the couch time - but it seems to keep her up at night and uncomfortable throughout the day...
Hospital Notes
-- Current medications --
For Blood Pressure:
Lisiniopril 2.5 mg(every 24 hours) (1x a day)
Amlodipine 2.5 mg (every 12 hours) (2x a day)
Captopril 3.0 mg (as needed as prn)
Isradipine 1.75 mg (as needed)
For Pain:
Tylenol 150 mg(every 4 hours)
Oxcydodone (as needed)
For tummy ache:
Ranitidine 1.7 ml (every 12 hours) (2x a day)
To Help Sleep:
Benadryl (as needed)
Melatonin (as needed)
Some of her Doctors...
Mathew Sullivan (Primary)
Jack Vo (Vascular Interventional Radiology) - did the surgery
Allison Redpath (Nephrology)
Dary Okamura (Nephrology)
Laurel (Nephrology)
Amy (Nephrology)
Jennifer (Nutrition)
-----------------------------------------------
Some Doctors the 2nd time around
Joseph T Flynn, MD
For Blood Pressure:
Lisiniopril 2.5 mg(every 24 hours) (1x a day)
Amlodipine 2.5 mg (every 12 hours) (2x a day)
Captopril 3.0 mg (as needed as prn)
Isradipine 1.75 mg (as needed)
For Pain:
Tylenol 150 mg(every 4 hours)
Oxcydodone (as needed)
For tummy ache:
Ranitidine 1.7 ml (every 12 hours) (2x a day)
To Help Sleep:
Benadryl (as needed)
Melatonin (as needed)
Some of her Doctors...
Mathew Sullivan (Primary)
Jack Vo (Vascular Interventional Radiology) - did the surgery
Allison Redpath (Nephrology)
Dary Okamura (Nephrology)
Laurel (Nephrology)
Amy (Nephrology)
Jennifer (Nutrition)
-----------------------------------------------
Some Doctors the 2nd time around
Joseph T Flynn, MD
Subscribe to:
Comments (Atom)