April 27, 2010

4/27/2010

She actually slept better during the night than she has recently, and about 6:00am got some pain medication. She almost immediately fell asleep and slept for a couple of hours. Blood pressure has been checked about every two hours and is for the most part still high, coming down a little after given her medication for it, but not a whole lot. She has had an Echo this morning (an ultra sound of her heart, and and an ultra sound to look at her kidneys. Both of these to look for possible causes of her high blood pressure. Matt also stopped by to update us and to check in. He said the medical team would be by about 10am to meet and talk to us about what to do next. He mentioned today would be a long day of testing, as more blood work is to be done and what ever else they come up with to do. He did say "She is a bit of a mystery". But sounds like they are committed to finding out what is going on, and that it may still be a few days... We missed the meeting with the Team as Ali was getting an ultra sound for her kidneys but I am sure they will be back around as neither us nor Ali was here! :) Meg and I are hanging in there, sleep would be nice but for now it is not happening too frequently :) Sydney is doing ok, thankfully Auntie Beka has time to take care of her - I hear they are headed to the Mall! :)

2:20pm -

Wow... a whole lot of info was just unloaded on us - doubt I can remember it all... We met with Richard Shugerman who is "The guy in charge" of Allison's team (until he hands it off tomorrow to someone else who will be with us for the duration it sounds like..) And also Allison Redpath who is in charge of looking into why she has high blood pressure. Ok so... Dr. Shugerman - asked alot of questions before he he started in with what he had going on, kind of gave us a scare. Anyway he told us that she has had extensive testing done - all good tests - that don't show anything... which on one hand rule out a whole bunch, but on the other didn't really lead anywhere. So he didn't really have an explanation for us. The one thing he did have to go on is that she has really high blood pressure. So his focus right now is finding out why and to slowly bring it down. We found out that really high blood pressure in kids can really cause them to be very uncomfortable, and relate some of the symptoms that Ali has had. Dr. Shugerman is hopefully that if we find what is causing the high blood pressure it will also shed light on everything else. Dr. Allison Redpath was next... She also didn't come straight out with test results but explained alot of what she was looking for and complications if that is what they found - but in the end she hasn't seen anything to cause her to find the cause of high blood pressure - Although over the next day or two she too is confident that they will find something. If her blood pressure continues to be high into tomorrow morning and they still don't have answers they want to do an abdominal CT scan which she said should show them if anything is going on, mainly looking for constricted blood vessels going into the kidneys as apparently in kids the kidneys can have a huge effect on blood pressure. She would like to find something before then because of the amount of radiation used in a ct scan but if not, would like to find answers... Everyone here seems committed to finding out what is going on, right now, the only thing to investigate is the high blood pressure. So more tests coming and hopefully all this snowballs off of really high blood pressure and we can get this figured out...... Allison still doesn't not feel well at all but at least we have some hope that they will find something and she can begin to feel like her old self again soon.

9:30pm.

Nights always seem more difficult for Ali... and tonight was shaping up to be no different. She began to get very easily agitated and spent a lot of time rolling around back and forth, whining and being upset. We spoke with the nurse and they gave her a little more potent pain reliever which has settled her down, but as of yet she has not fallen asleep... She almost seems to be fighting going to sleep, every now and then wanting to get up. :( Her blood pressure has still been high all day and it doesn't help that she is tired of it being taken and gets very upset when the nurse comes to get it every couple of hours, of course this just makes the reading even higher. Since it is all automated we have asked if we could do it, so maybe she wouldn't get so worked up and have got a yes but as of yet haven't really been shown what exactly to do on the machine to read and record it... I just think she doesn't like it being done anymore :( Emily, which is one of the Dr's we originally spoke with in the ER stopped by tonight to see how things are going. She will be on night shift tonight and will be around if we need anything. Tomorrow I am assuming we will be going through with Ali getting another CT scan this one on her abdomen area to get a good picture of everything there and they will be injecting contrast to get a good look at her blood vessels. I am hopeful something is found that they can use to explain all of this (they seem to be) but with every other test coming back showing nothing I don't know that I am all that confident anymore. Glad we are at the Hospital. She has slept lots today but also seems to get pretty agitated at times as well. Could have a lot to do with her just not wanting to be here any more and to be at home (which she has told us) but the longer behaviors like this go on the harder it is to watch as it it NOT our little usual happy go lucky Allison. The shared room obviously is not the greatest it is now almost 10pm and the nurses are "next door" behind the curtain working with the girl over there - not really a nice peacefully atmosphere for Alli to relax and get some sleep :( Although she has calmed down and seems to be much more relaxed for now she is not asleep and really doesn't show any signs of doing so. We hope tomorrow will bring some answers as I can't imagine feeling as apparently Allison does for this long - must be awfull :(