April 28, 2010

Day 3

4/28/2010
1:00am

Lack of sleep and lack of answers are begining to take a toll on me. Allison is still not comfortable and the only way she gets any kind of rest is laying on or with either Megan or I. The problem is they have her in a crib (apparently because she is under 3 years old) and Megan and I cannot lay with her. And we are in a shared room and so far all night nurses have been in and out dealing with the other patient. There is constant commotion going on. Megan has taken Ali out of her bed and has her laying across her lap on the pull out sofa next to it with her - which is difficult because of everything Ali is hooked up to being monitored. And not really comfortable for whomever is holder her. According to her monitors HR, BR, and O2 levels are the most relaxed they have been although every time something is going on in the next bed (quite frequently) HR goes up and breathing becomes more erratic. In the morning I am definatley speaking to her Dr about getting around the policy of having her in a crib. It would be nice to have a single room obviously, but I do understand logistically that may not happen :( It's not making a whole lot of sense to me if they believe her blood pressure is such a vital part of what is going and they have her in a situation that does not allow her to relax and be comfortable which would help her blood pressure go down.

2:00pm

Well we successfully got her a regular bed this morning at about 4:00 am. It has been soo much better. All she wants to do is lay on me, but she seems more comfortable. I thought the days were running together before we got here... last night between cat naps it all seems like a dream. I know a new Dr. came in and introduced herself this morning and said she would be back, but can't remember her name or if she said when she would be back. Ali had the abdominal CT scan this morning at 10am, but we have not heard yet about the results. I did get Ali to eat about 1/2 a hash brown and 1 bite of applesauce for breakfast. And for lunch (it took some pleading) got her to help me eat a peanut butter and jelly sandwich - she had a few bites. Then even had 2 bites of pears. For most of the day she has been resting fairly well. She started to get pretty fidgety a while ago and we had them give her some more occycodone and she has been pretty peacefull since. It does not put her to sleep though! But she does look comfortable watching TV.

2:30pm - CT scan results

Dr. Bishop came in to introduce herself. (She is replacing Dr. Shugerman) in the rotation. Although she is turning us over to the nephrology department, and it sounds like a Dr. Smith will now be in charge of things. The CT scan at first look shows everything normal... but i guess they will be going over it with a fine tooth comb before moving on. They are still looking at the only thing they have seen which is the high blood pressure and getting it under control. That is why we are being put under the supervision of the nephrology department and Dr. Smith. We are suppose to meet that team sometime this afternoon. Also the initial urine sample we got the other day shows a slight urinary tract infection, so they want another sample and are going to begin antibiotics for treating that. This may have been brought on by the circumstances with the mirilax (laxitive) treatment for constipation, and wearing a diaper again... She continues to be on radipine to try and get the blood pressure to drop.

3:30pm - meeting with the Dr.s...

Ok they seem to hit us all at once :) First Dr. Jack Vo came and talked to us. He is in Vascular Interventional Radiology. Which according to Allison Redpath (who we spoke with next) he is THE expert in this field. He is the one that has been studying Allison's latest CT scan. He said it all looks good - no narrowing of the artieries, no tumors, etc everything looks well. Although... he says at her age the branching of the arteries to feed the kidneys get too small to see and evaluate so that is still likely that somewhere in a branch that it has narrowed - the kidney senses this and sends out signals to increase pressure. He also said that some of her symptoms are signs of high blood pressure and that in a way that is lucky as sometimes no symptoms of high blood pressure show until there is end organ damage - eyes, kidneys, heart. NONE of this is present in Allison. He also feels since nothing else can be shown that the high blood pressure can be causing this all. This can be treated and should be able to get under control and she should be fine. Then a year from now when she is a little bigger they can check again and if indeed any of the branches show narrowing (when they are a little bigger) the can do an angeoplasty and fix. On to conversation with Allison Redpath... :) Well first of all she is not convinced on the urninary infection... She thinks that the sample may very well of been contaminated and would like to get another clean sample before prescribing a 10 day course of antibiotics. She is very confident especially after consulting with Dr. Vo the high blood pressure is being caused by Renal Artery Stenosis (narrowing of the arteries - or branches of - to the kidneys) or maybe Pheochromo Cytoma which is a tumor that secretes a hormone that causes blood pressure to increase. Pheochromo Cytoma is very very very rare. They are running a blood test for this but won't be back for probably about a week. Dr. Redpath would like to see her blood pressure get to a consistent 120/80 (which is still a little elevated) before she goes home (and to be feeling much better) Her last blood pressure reading was 150/105. And it has been higher. She thinks it will still be a few days. And probably still tinker with medication as we are home consulting over the phone. We will have to take her blood pressure and report to fine tune her medicine from home. But a few days still here is what it looks like. From talking to Dr. Vo and Dr. Redpath we sure have had a lot of education on high blood pressure, and what it can cause, and how it can feel - especially in children. There is still no defining test to prove what is causing the high blood pressure or that is the main cause of what is going on - although everyone here seems confident that we get that under control and she will return to her normal self

5:30pm Ophthalmology

It just keeps coming :) Just got back from ophthalmology to have her eyes checked to make sure the high blood pressure hasn't done any damage to either of them since from time to time she would mention her eye hurt... Clean bill of health there... they look good. She got agitated during one of the test - understandable - and scored a little low but they said it was most likely just to do with she didn't want to do it, not that she couldn't and they were perfectly fine with what they saw and physically (after dilating them) they looked fine. Whew... a whirlwind today - at least this afternoon. We'll be here a few more days, then hopefully close to being back to some normalcy....