Ali at Seattle Children's Hospital - April 26, 2010

Well, to catch up anyone who is not aware of what has been going on with our little Ali she has not been feeling well at all for about 3 weeks. Allison is our 2 year old daughter. (will be 3 in may). Stomach pain, mostly but also sometime complains her head hurts, her neck hurts, leg hurts etc. She has not been eating, or sleeping (just can't get comfortable enough) and has lost about 6 pounds, over that time. ( about 1.5 lbs over the last 4 days) We have been back and forth to her pediatrician and been to the ER at Mary Bridge in Tacoma. She has had blood tests, urine, tests, spinal fluid tests - yuck, X-rays etc. And all of them except the spinal done again... Nothing ever comes up! So as of yet no one can tell us what is wrong. She finally dropped enough weight that we took her to Seattle Childrens on the 26th. Oh and no the picture is not from the Hospital :) It's from our trip to Hawaii last summer :)

4/26/2010
The ER at Childrens did blood work and took chest and abdominal X-rays. Blood work came back fine showing nothing out of the ordinary. Chest X-rays we haven't heard but assume all is well - as they were a few days ago when taken then. They did see she has pretty high blood pressure. They started an IV and gave her some morphine. This seemed to relax her and she took about a 45 min nap :) Part of her medical team (Matt and Emily) came and spoke to us extensively about Ali and what had been going on with her. Both were very nice.
We got moved to a room outside the ER, once settled in, Matt came and told us they had been deliberating, but had decided to do a ct scan of her head. This was quick and painless and once again showed nothing unusual. But he said now they could rule some things out and concentrate on others. They did also start her on some medication to help with her blood pressure...

More to come in the Days ahead...

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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 :(

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....

April 29, 2010

Day 4
Is it really Day 4? Its hard to keep straight. I think one of us (Megan or I) is due to make a run home today. Need some more clothes and things - didn't really expect to be here this long... And we need to check in on Sydney. We know she is doing well, and are so thankful for all the help we have had in looking after her while we are here with Ali.
Last night again was not a very good night - as far as sleep goes.. She got some benadryl to start the night off to help her sleep, and it did, but only for a couple of hours. After that I think she was up squirming and fidgeting around the rest of the night! Even after another dose of occycodone at about 4:30am. I don't think it helps with the shared room with the commotion that goes on off and on throughout the night. Today as far as we know no more tests just trying to tweak medication to get her blood pressure down. So far they have had limited success in that. Throughout the night it was pretty consistently 140's/100. The goal is to get her blood pressure down to a consistent 120/80 and feeling better before going home. Maybe her blood pressure is still too high for her to be comfortable... something to ask today... If she looks like she may be feeling better today, we are going to try and get her up to the playroom to see if she has any desire to play a little bit. If nothing else get her out of this room for a bit. She didn't want any breakfast this morning but mean old dad pretty much made her take a few bites of toast followed by a few bites of yogurt - untill she had enough and pretty much told me off :) We still need a clean urine sample today to rule out a urninary tract infection.

10:30am First Round table..Just got done with the first round table discussion with our new team. Pretty much the team of Dr.'s come down to the room and meets just outside. We are more than welcome and encouraged to join. Matt (saw us in the ER) and Allion (Redpath) updated the team on the history and current progress of Allison and then the team discusses her case. I pretty much found out the blood pressure medication regiment she was on last night had little or no affect :( which is what I had thought, so they are getting more aggressive today. Although one of the medications she is getting takes about 3 days to really see if it is having any affect. Also they would really like to get her sleeping pattern back to normal - having her sleep at night. Which was good to hear because that is concern of ours to as she doesn't really sleep at all... So they are going to concentrate on that and do what they can to make sure she starts getting some sleep. Also they would like to limit her salt intake, to help with the blood pressure, so they notified they nutritionist and we just need to kind of keep track if we give her anything else - like McDonalds Hamburger and chicken nuggets :) that she asks for every now and then :) The team meeting was a pretty good experience as it caught me up and reviewed what is going on and I could hear exactly what they are thinking and planning on doing. Disappointing so far the medications haven't had much affect, but it will be changing and hopefully we will find a combination and amount that will help.

7:30pm
I headed home for a bit today. Got some more clothes and a few other things since we are going to be here a few more days. And was able to see Sydney for a little bit. Sydney even packed a bag with some toys and a few movies for her sister. The latest blood pressure on the board I see is 132/72. They need to see a 120/80 consistently for 24 hrs to let us out of here - and of course for her to be seeming a little more like herself. The only real change I guess when I was gone is that Meg spoke with one of her Dr.'s (Allison Redpath) and they are becoming concerned that she is still not eating... (that has been concerning me for a while :) ) So... they are going to check her weight tomorrow and if she is continueing to lose weight since she has been her they will probably put a feeding tube in her :( They would rather not, but she really needs some calories... that will be tough I think, but I really think mostly she needs to catch up on her sleep and start eating to feel better so in the long run it should only help. Poor kid :( Also they think she may be a little dehydrated so they added a dose of straight saline to her IV at a rate of 100ml/hr... Lets hope she starts feeling better soon!

April 30, 2010

Day 5
It is looking like being out of here with a handle on what ever is going on by this weekend was maybe a little too optimistic :( still really no headway on getting Allison's blood pressure down to where they are comfortable with it. They have given us a portable blood pressure device that we will take home (whenever that is) to monitor her and she seems to be much better with mom and dad using that to get her readings. Still around 140's/100. Some higher in the 150's/110's and some lower but mostly around there. The Dr's I think are begining to become puzzled over this and looks like they might start doing some more testing - probing to find something - anything. Also they really want us to let them know about her comfort level - especially at night. And are willing to do what ever it might take to get her comfortable and sleeping. I would think her being in pain so much has to have a negative effect on her blood pressure.
Despite my best efforts and coaxing we have not been able to really get her to eat enough and she has lost a litte more weight - not alot (about .15 kg) but it is down and they are going to give her an NG (feeding tube) I am really disappointed in this - NOT that I don't think it will do her good - just that I have worked really hard with her lately to get her to eat and I think she has really tried to eat also when I try, she just doesn't eat that much at all. I know it will do her good - not that "fun" of a procedure to have done ontop of everything else she has had...
Not much else going on. More and more it looks like we are going to have to start looking "outside the box" to find answers on what is going on. They do have scheduled one other test to see if there may be any scar tissure on her kidney's which may not of showed up on the CT scan. Our room mate is going to be getting moved to another room sometime today I think, so we will have some peace and quiet atleast for awhile. I'm not sure i can go with them to have the tube put in, we are welcome and encouraged to go, just might be the trigger that makes me lose it since Ali and I have been working so hard to avoid this :( We'll see... Meg is for sure going). Allison is also going to have some more blood taken (which can be done with a prick of the finger this time) at the same time. Scheduled for around noon. 

2:00pmFirst of all I did make it to the procedure of getting a feeding tube for Ali, it helps that she is such a strong kid!  She of course didn't like it, but really handled it pretty well considering.
They have changed the combination of medicine that they are giving her for her blood pressure (have added captopril) and initially it looks like it is working! Hopefully it will continue to work... Her blood pressure 40 minutes after getting the first dose of captopril is down to 112/69. Also they did find a marker for mono in one of her blood test. Not sure what this exactly means but could certainly mean that she had had mono recently, which could explain some of her symptoms. I guess the virus usually takes 4-6 weeks to run its course so hopefully if it is still lurking around it is almost gone... Another blood test in the near future will let us know more...
We also just got done speaking with one of her Dr's (Allison Redpath) and she is very excited about the captopril seeming to work. This is a medicine they usually prescribe specifically for renal artery stenosis (narrowing of the arteries to the kidneys), and since it seems to be working the best, supports the idea that some of the artery branching to her kidneys that are too small to see at this point may be narrowing enough to be causing the high blood pressure. This medicine was not initially given because it would of had an adverse affect if indeed she had Pheochromo Cytoma which is the very very rare tumor. But since the others were not having much affect they decided to give it a try. So... we are back to having a little bit of good news and hope that we are indeed going in the right direction. Hopefully after a few tube feedings she will get her apetite back and want to eat on her own :)

8:00 pm
Not much new.  Her last blood pressure reading was back up again to 140/102 :(  So she got another dose of captopril and amlodipine and we'll check again in about an hour.  She has looked very tired all day today - which she should.  It is just a change... not much restlessness today - alot of just laying in her bed watching movies and drifting in and out of short naps.  It would be nice if this trend continued throughout the night - except with maybe more actually sleeping.
On another note... Sydney had a soccer game tonight and the reports are the she was Fantasitc!  We are sad that one of us didn't get down to see it, but we did get it video taped!  So thank you whoever did the taping! :)  My mom is coming in from Arizona tomorrow to kind of take over the house untill we get home, so Syd will be able to be at home sleeping in her bed and getting into some kind of a routine, although I think she would rather stay on her little vacation with Auntie Beka! :) - Thank you again to all who have helped out I know she has had fun the last few days, with play dates, birthday parties, trips to the mall and just hanging out.
We did meet the Dr that is going to be taking over for the weekend for Dr Allison Redpath (why can't doctors just work 24-7! :) ) I didn't get her name, she seemed nice and we talked to her about a few things, like what signs to look for that might tell us we can take the feeding tube out, what we could expect if we were sent home with the feeding tube still in, what happens next if they can't get the blood pressure more consistently down, and what if it does come down and she still doesn't return to herself?  A lot of info there, but in a nutshell atleast good to know that they are also aware of those things and are looking into what may be next, if there needs to be a next.  With no roommate tonight it is much much more peacefull in our room - lets hope it stays that way and translates into some good sleep :)

May 1, 2010 - 9:00am

Day 6
Ali slept pretty well last night - for awhile.  She slept pretty good until about midnight or so and then was pretty much up the rest of the night :(  She has slept a little this morning while watching some cartoons.  Her blood pressure is still up and and down - and never down to a normal 3 year old level.  It seems to fluctuate between 140ish/110ish and 110ish/70ish.  She has wanted to sit in her wagon this morning.  We have found a plasitc radio flyer wagon she can sit and and we take her for rides around the hospital.  For the most part she just lays in the bottom of it, but it gets her out of bed and out of the room.  She is due for some more meds and a blood pressure reading but I have told her after that we can go.  I am sure that she is pretty bored by now after being here all week.  Not much new or no real progress.  The doctors are still optimistic that since she seems to be responding to the captopril best that indeed the problem stems from renal artery stenosis.  I would like to see some more improvements before I buy off on that totally :)

May 1, 2010 - 11:15am

Day 6

We finally made it our for a wagon ride!  It took a little longer because some of the kidney doctors came in and we spoke to them for a bit.  One of my sisters friends had mentioned Ali's symptoms were very similar to someone's she knew who had HSP (Henoch-Schonlein Purpura).  I read about it and agreed, so I asked the doctors about it.  They agreed some of the symptoms were similar but there were some that were very prevalent in HSP she didn't show and some of the tests they have done would of shown some indicators for it.  They are increasing her frequency of captopril since it seems to work some, and if she responds well to that eventually they will change her dose to a longer lasting version that they will only give once or twice a day.  Right now it seems to work and then wear off and her blood pressure goes back up.  We are realizing it is going to be a long process to get Ali feeling back to her old self, we need to get her blood pressure down and keep it down and then her body will begin to adjust and get back to normal, but it is not gonna happen over night :(  One of the doctors asked this morning if she ever seemed non responsive... And yes she does from time to time, can't get much out of her except a feeble nod or shake (or combination of) of her head.  I had just thought maybe she was exhausted and or dopped up on a bunch of meds and not thought much of it really.  Although now since the doctors were asking about it I will have to make sure to follow up and see why they were asking about it...