Tuesday, June 30, 2009

All over

Well, it's all over and we're home, so life is good! We got home on Friday afternoon, but I just have felt too tired to update my blog since then - sorry! It was just such an exhausting couple of weeks!
Avery is back to her normal happy sweet self - just a little weaker after lying in bed for two weeks. It hopefully won't take long to get back to normal though. Before this whole ordeal she had started being able to stand up and reach the lightswitch to turn on her bedroom light, but she's not been able to do that since we got home. Also, she was walking in her walker the other day and crouched down to pick something up, but then she couldn't stand back up and I had to help her. She's been able to do that for a couple of months at least, so that was sort of sad to see. But, as I said, I don't think it should take too long for her to regain all that strength. She also lost a couple of pounds since she barely ate anything for the whole two weeks, so hopefully that strength will come back as she puts that weight back on.
So. The verdict is that her shunt really was overdraining, and that it may have been slightly overdraining for quite some time, which is why, when they put it back to the same setting as before, it didn't fix the problem. Dr Jane up at UVa sort of seemed to suggest that our neurosurgeon should have been more vigilant when her head circumference continued to go down on the percentile chart. Of course, at birth it was way above the 95th percentile, but it has gone down and down until it is now apparently in the 50th percentile, which we thought was just great, but apparently that could also be because the shunt was overdraining and the setting should have been changed. Slackers. So then when the setting changed and started draining even more, it was a very painful problem. Seriously painful. I mean, they kept on talking about seizures when we were telling them about Avery's episodes here in Roanoke, because her body would go completely rigid from head to toe, sweat would drip from her face and head, she couldn't speak when you asked her where it hurt, and she lost bladder control. I was pretty sure that it wasn't seizures though, because she would still looks at me when I was trying to comfort her and talk to her, and after several minutes of trying to get an answer she would eventually manage to tell us that her head hurt. But it seemed to me that it was more that she was trying to hold it together, if you know what I mean, so she couldn't speak because she was hyperventilating and/or trying to hold her breath so that she wouldn't scream. And as it turns out, it really wasn't seizures - she was just in such an incredible amount of pain...I can't even tell you how hard it was to watch. And how frustrating it was to watch it get worse and worse as the days went by, and still have no answers.
We will be keeping Dr Jane at UVa as Avery's neurosurgeon. We'll not be taking her back to the hospital here for suspected shunt problems. The amount of waiting we had to do was beyond ridiculous. We didn't see any pediatric neurosurgeons until day 5 of being in the hospital. The neurosurgeons we did see kept us waiting for hours every time we did need to see them, and then would forget to bring the tool for reading her shunt, so then we'd have to wait several more hours. When they ruled out a shunt infection, they decided the problem was completely unrelated to the shunt even though the symptoms were exactly the same but worse than the first day we came in when it was undoubtedly a shunt problem.
The hospital here in Roanoke is very pretty and very comfortable, and the nurses are mostly nice, and the food is better, and if your child has to see anyone other than a pediatric neurosurgeon then it's great. UVa was not as pretty, the food was horrible and they didn't bring food for a parent, you had to run the water in the sink for probably 10 minutes before it got hot, but the doctors were so much more attentive and timely!! And if we go in with suspected shunt problems, they have a fast MRI that takes less than 5 minutes, instead of immediately sending her off for chest xrays and ct scans. And if Dr Jane happens to be on vacation (which Dr Simonds was), there are still other qualified doctors and residents to see us.
Anyway. Sorry, didn't mean to go on about that.
So, Avery's shunt is now set at 2.0, and we'll be going back up to UVa on July 7th to make sure everything is still okay. She's doing wonderfully.

Monday, June 22, 2009

Just a quick update

Well, I don't have much time, but I thought I should post a quick update.
We are now up at UVa medical center in Charlottesville. They just weren't getting any closer to giving us answers let alone solutions down in Roanoke, so Avery came up to UVA by ambulance on Saturday morning. She was having a pretty good moment when they left, so she was able to enjoy the ambulance ride until she fell asleep, so that was good :)
We are not yet any closer to a diagnosis, and Avery is so sick of being poked and prodded. As of this morning she is on her 4th IV, and it was so sad to see them doing it. I told her they had to do a new one because the old one wasn't working any more, and she kept on saying "No, it's working! I'm finished!!" She was so upset. She's got to the point now where she starts panicking a bit whenever a nurse or doctor comes in to the room, and she will still tell us when she's hurting (which is almost constantly now), but if anyone else asks her how she feels she says she's fine. I think she's afraid that they'll do something else to her if she tells them she's in pain. Poor girl.
Yesterday they inserted an ICP monitor into her head. Hopefully it will bring us closer to some answers.
We (well, one of us plus Brogan) are staying at the Ronald McDonald house right next to the hospital. What a blessing this place is.
My mother flies in tomorrow to help with watching Brogan so that we can both spend more time with Avery.
Well, that's all I can bring myself to write at the moment. It's just all so frustrating, I wish it was all over and we could take Avery home.

Wednesday, June 17, 2009

Day 5

We saw doctors today - woohoo! After such a horrible day yesterday feeling like we'd been put in a room and forgotten about, we saw about 5 different doctors this morning. Everybody has different opinions. Avery had quite a nice happy morning, although she still wouldn't eat anything, and then she slept for a couple of hours after her EEG. The two neurosurgeons showed up in the evening, and the neurology doctor happened to show up while they were there too, which was great! Avery wasn't feeling very good when they were there. Dr Frasier (neurosurgeon) was telling us again that he doesn't think it's a shunt problem, or at least that it was a shunt setting problem in addition to an unrelated fever. Obviously, we know that it's not a shunt blockage or bacterial infection of any kind. The shunt setting did spontaneously change sometime last week. It is now set at 1.5 (as of yesterday), although it has been at 1.0 since Avery was 6 months old. The fevers and headaches started at about the same time - we noticed the headaches first obviously. Dr Sisk (neurology) said that her sleeping EEG was completely normal, and her waking part had some mild abnormalities, which could be just because of the headaches or something. Sometime when we were talking to him, the neurosurgeons wandered off and didn't come back...! Dr Sisk spent a good long time with Avery looking over her and talking to us about her symptoms and EEG, etc, and he says that he thinks it may be just some sort of viral headache. While he was looking over her he asked me to go get a nurse to check her temperature because he though she felt like she might be about 101.5, so I got the nurse, and she checked and she was 101! hehe! That's years of experience right there :) He says that he would give it til the morning with motrin every 6 hours for the fever and pain, and if it doesn't consistently improve then he would start thinking about going up to UVa, which is something we've been contemplating for a couple of days now. After he'd finished looking at her, Dr Sisk went out and looked at all the lab work on the computer, and then ordered more blood work since the second blood test results looked questionable to him. All in all, he seemed to think that someone had been dropping the ball with Avery.
Anyway, Avery had a great evening - Gabe said that she was acting like Avery :) - so I'm hoping that Dr Sisk's diagnosis might be right! If she's still feeling good in the morning then I'm hoping that maybe she'll be able to come home tomorrow! Of course, if she gets worse again, then we may well be heading up to UVa at some point, but we're really hoping that's not necessary.
Good night!

Tuesday, June 16, 2009

Nothing new

Blah. What a frustrating day. Nothing has changed, and last time we saw a doctor was over 12 hours ago. Yep. Pretty cool. And the best part is that the next step was for Avery to be visited by Dr Wilson, a pediatric neurologist (he's nice - we've seen him a couple of times before) So as the afternoon wore on and we were just sitting around waiting, I asked our nurse (we've had some really great nurses) when Dr Wilson might be coming by, and she warned us that he doesn't usually do his rounds until late. Like, 9:30-10pm late. So that was joyful news. So we waited. Gabe got off work and came and waited with us too. Poor boy is exhausted - Avery (and therefore Gabe) had a horrible night last night with lots and lots of the horrible headaches and fever and screaming, so he went to work this morning on about 2 hours sleep or something crazy like that. Anyway, we waited. We were able to get all the cords and monitors off, and they moved her from ICU to the regular peds unit, and we waited and waited. I asked again about Dr Wilson, and was told again that he usually doesn't make his rounds until really late, so we waited, and another wonderful friend brought us dinner and took Brogan home with her to give him some dinner and put him to bed. Avery perked up again and felt quite well from about 7pm til 9:30pm when she went to sleep. I finally went back out to ask about Dr Wilson's whereabouts at about 10:10pm, because I knew that Brogan would be waking up hungry soon and the only reason I was still hanging around was for this doctor's visit so that I could make sure he knew exactly what was going on. So I went out and asked, and the girl said she would page him and see where he was, but that he usually wasn't still doing rounds quite this late. So she paged him, and I came back out a couple of minutes later and she said "Well...Dr Wilson is actually on vacation, and I haven't heard back from the neurologist who's covering it" And then I talked to our nurse a few minutes later after I got a call to say that Brogan was awake, and she said that she hadn't even seen an order on Avery's chart for a neurologist.
So basically, today we waited 12 hours for a doctor was on vacation and/or a doctor who didn't even know he was supposed to be coming to see us. Joy.

Monday, June 15, 2009

Quick update...

Well, we've been in the hospital all day again today, and Avery is spending the night in the pediatric ICU. When I left tonight she was feeling and looking a little more like herself, so hopefully she will have a good night. She slept a lot during the day, and was pretty miserable when she was awake. They tapped her shunt this evening, so hopefully tomorrow we'll know for sure whether that's the problem. They just don't really know at this point, but they're keeping her fever down with motrin and keeping her hydrated with an IV, and they started her on antibiotics after they tapped her shunt, and she's definitely perked up a lot since all of that, so hopefully the morning will find her even more improved.
Gabe was supposed to be working a 16 hour shift today, but was able to get off work and meet us at the neurosurgeon's office when Avery was having problems this morning. We got to the doctor's office at 8:30am, and they sent us to the ER, where we stayed until the afternoon when they admitted her to the PICU, and that's where she and Gabe are spending the night. Brogan spent all day at the Dubyk's house - Stephanie is an absolute godsend. I've just been leaving the hospital when I need to breastfeed him, and she has taken care of him so that Gabe and I have been able to be with Avery. What an angel she has been! And tomorrow Gabe has to be at work at 7am, so I will be taking Brogan to the hospital with me - I'll hopefully be able to get there before Gabe has to leave for work. They usually don't let children under 12 into the picu, but I asked Avery's nurse about it before I left tonight and she said it'll be okay if he's only there for a little while since we have to work something out with Gabe going to work and all. So I was going to take him with me and give him breakfast there and then leave Avery for a few minutes to take him over to the Dubyk's house, but then they said that they'll come pick him up so that I don't have to leave Avery alone. Seriously, I don't know how we would have managed this whole thing without them!
I don't know what I'm still doing awake. I need to sleep. I will update again when I can. I would have been doing so from the hospital, but for some reason my palm pilot doesn't like the hospital's wi-fi...weird.

back in the hospital

well, we've been in the hospital all day again today. Avery's been admitted to the pediatric ICU. Will let you all know what's going on when we know.

Sunday, June 14, 2009

Home tonight

We are home tonight after a long night and day in the hospital. Avery woke up a couple of times during the night with the intense headaches, but they lessened in intensity as the day drew on and she's feeling and acting so much better than yesterday. She still only wanted to lie down for most of the morning, and then in the afternoon she was happy sitting up a bit but still didn't want to be doing much, and was still saying that she had a headache. She was pretty happy though, and there have been no more of the horrible agonising headaches today. She hasn't wanted to eat anything really. Or rather, when I've offered her something, if she said she wanted it, she'd have a bite or two and then not want any more. Even ice cream and chocolate milk! But she's had little bites and sips here and there throughout the day. We spent most of the day just waiting around in the pediatric ward wondering when the doctor was going to come see her! Oh, and the other ting that was different today was that she woke up with a mild fever - about 101.3 or something like that. They gave her some tylenol and it went back down to 99.1. When the neurosurgeons finally showed up at about 3:30pm, Avery was sitting in one of those little read and yellow plastic cars, and they walked in and were like "Wow! Well, we're not going to tap the shunt of a little girl who looks like that!!"
When I wrote last night I think I said that they changed her shunt setting from 1.0 to 1.5 - if I did, that was a mistake. I was tired! They were going to change it to 1.5, until they checked and saw that it had somehow changed itself to 0.5, so they just put it back to 1.0. We had them check it again before they discharged her. Here's the frustrating thing: Avery was sitting on the bed and he came over to check it, and said she could sit up, and he checked it and it said 2.5!! He checked it again 3 or 4 times, and got 0.5 once and 2.5 every other time, and then he told Avery she needed to lie down for him to read it properly. Then he got 2.5 again the first time, but after a couple more tries he got 1.0, and got 1.0 three times in a row. That seems very odd to me. He said it was because of her moving when he was trying to read it or something like that, but that seemed a little made up to me.
Anyway. We got home probably about 5pm. Avery fell asleep on the way home and stayed asleep for a while after we got home, and when she woke up she was complaining of a headache again and the fever had come back. So, as I said, we'll be watching her closely tonight and tomorrow, but hopefully everything will just settle back down.

Saturday, June 13, 2009

In the hospital


Well, Avery is in the hospital tonight. I just got home with Brogan about 30 minutes ago, and Gabe is staying with her at the hospital.
At about 12pm this afternoon I was getting ready to go to a baby shower with Avery and Brogan, and Avery was quite happily crawling up the stairs when she suddenly stopped and said she was dizzy, and then she slid back downstairs and started crying and saying she had a headache. She was suddenly in so much pain that she was writhing and squirming and just screaming and crying so hard. I couldn't do anything to make it better. I tried to rub her neck and shoulders, which usually helps with those other headaches she gets, but it didn't seem to help and she just screamed even louder, so I lay her flat on the couch and turned off the lights, and after a couple of minutes she calmed down. Meanwhile, I had called Gabe and we'd decided to take her to the ER as soon as he got home from Lowes. So he rushed home, but by the time he got back she was calm and happy lying on the couch. So I decided to take her to the baby shower anyway. It was less than a 20 minute drive, but by the time we got there she was fast asleep. I woke her up and took her inside, and she sat next to me on the couch for a while, and then got down to sit on the floor and play with blocks and trains with Brogan. After a couple of minutes of sitting there she got another one of the agonising headaches and just started screaming again, and I couldn't calm her down, so I decided that I really would take her to the ER. On the way to the hospital she slouched down and fell asleep again. I drove around for a few minutes while I waited for Gabe to get there, because I had no stroller, and she wasn't in a state to walk in her walker, and I couldn't carry Avery and Brogan very competently. She woke up when I was turning into a parking lot to turn around and said "What's this?" and I said we were turning around, and she said "Oh, okay" and I asked "How are you feeling?" and she didn't respond because she had fallen asleep again. That fast. I mean, zonked. I called out her name and she just didn't respond at all, so she was well and truly asleep.
Anyway, I'm too tired to go into our ER visit in too much detail, so I'll try to be quick. We got there at about 2:30 or 3pm, and they got us checked in pretty quickly. While we were checking in she acted like she was going to vomit, but managed to hold back, and we got her lying down again. Lying down really seems to help her feel better. The neurosurgeon on call came by and checked her shunt setting, and it was still at 1.0, which is what it's been for a couple of years now. But everybody seemed to think it must be shunt related since there were no signs of any other illness, and the neurosurgeon agreed that since lying down seemed to take the edge off it seemed like some low pressure type thing, so he ordered a shunt series of xrays and a CT scan. The last images of her brain we got were from our ER trip in February 2008, and Dr Frasier (the neurosurgeon) said that these images should probably look about the same if everything was normal. But when they came back the ventricles were actually really small - he said that in some areas they were barely even discernable, which is crazy...so he thinks that her shunt is actually over-draining. So he wanted to change the shunt setting from 1.0 to 1.5 and see if that helped her feel better. When they came back to change it, they checked it again to see the setting, and this time for some reason it was reading 0.5, even though 2 hours before it said 1.0, so they're not entirely sure whether the reading device was having a moment, or whether her shunt actually changed. The first option is the more likely and more desirable option :) So they changed it to 1.5 and admitted her to stay the night for observation and whatnot.
There! 7 hours in the ER reduced to one paragraph! Doesn't that make it all sounds simple and quick?! So we are obviously hoping and praying that this new shunt setting is all she needs. And she was actually feeling considerably better when I left for the night! She was able to sitting up and not screaming, which was a vast improvement considering that all afternoon if we tried to get her sitting up at all she was instantly in pain and crying. She was also eating some chicken strips and drinking some chocolate milk, which is great because she had refused any food or drink since breakfast. So we're feeling hopeful that they've guessed right on this issue! I'll be going back to the hospital first thing in the morning and we'll see how it goes. So I'm praying she has a good night.
Our dear, sweet, wonderful friends the Dubyks came and picked Brogan up while we were all in the ER and took him home with them and gave him dinner and put him to bed - how grateful I am for them and their willingness to help!!! We have such wonderful friends! It was such a relief to be able to just focus on Avery and not have to keep a 10 month old happy too, an once Avery and Gabe were settled into their room in the pediatric ward I was able to just go and wake up Brogan and bring him home - so much less traumatic for him!
I will let you know more tomorrow once we know more.

Thursday, June 11, 2009

First and last

This has been a big week for Avery! She's had her very first real sleepover, and she also had her last day of school!
On Monday our dear sweet friends Annie and Steve welcomed their newest little baby into the world, and we watched their two little ones for the night while they were in the hospital, so Avery got to have her very first proper sleepover!! I was probably even more excited than she was :) Kayla is 5 months older than Avery, and they have been friends since they were tiny babies, so it's been really fun to watch their friendship grow and change as they've grown. I love watching them now that they're old enough to have their own little conversations - it's too cute! So I was excited to see how well they did with the whole sleepover thing!

This is what our family room looked like with two 3 yr olds, a 15 month old and a 10 month old playing in it :) haha! Of course, I can't really blame the bicycles or the pinned up curtains on the children, but oh well! Soon we'll be able to get all moved in properly - once the kitchen and upstairs bathroom are finished everything will have a place.
The girls all ready for bed and super excited!! They spent several minutes just jumping all over the bed giggling and acting girly, but trying to be quiet because Brogan and Trevor were already in bed!
Jumping and giggling some more :)
...and more!
Here they are pretending to sleep :) They were absolute angels though, and it was so cute to watch! Once I'd finished saying good night to them I went downstairs, but then crept back up after a couple of minutes to spy on them :D They were chatting away - Kayla was telling Avery that she could have apple juice in the morning, (she asked for some just before I left, and that's what I told her) Avery told Kayla it was time to lie down, Avery told Kayla she was going to tell her a story...it was just about as sweet as could be! And they were very good too, because they only stayed up chatting and giggling for about 20 minutes after I put them to bed, and then they went to sleep and slept all night!

Wednesday was Avery's last day of school! When I dropped her off I went in for a few minutes because I wanted to take a couple of pictures, and we also had some flowers for Miss Leslie, Miss Nancy and Miss Melissa. Avery and I walked in while her friends were getting off the bus, so we got into the classroom before anyone else, and she looked around and said "Oh no, my friends are not here!"
You might notice that Avery's chair doesn't have her name on it, and that was another thing she told me about while we were waiting for her friends. We walked over to the circle and she said "Oh no! What happened to my sticker on my chair! It's gone!" I asked her what happened to it and she said "I think Amare took it" and gave a big dramatic sigh and rolled her eyes. Funny girl :)
It's been funny throughout the year to see and hear the things she's "picked up" from preschool! Things like the cute little southern accent she's started using for some words (I want to go outsaaaad and play on my slaaaad!) and how I know all the first and last names of all the children in her class because a lot of the time when she sees the first letters of their names somewhere she'll just shout out "H for Hunter Jackson!!!" Pretty funny! Anyway, after we got home on Wednesday she was playing with Gabe outside and came out with the phrase "Lord have mercy!" Oh dear!!

Friday, June 05, 2009

Sorry no pictures

Well, my camera is somewhere around but I'm not sure where, so I'm afraid there will be no pictures of our new house with this post! But I will post some as soon as I locate it :)
I just wanted to write a quick post to let you all know that the move went well and we are loving our new house! Really! It is wonderful. We've been working like crazy to do everything that needs to be done, so we're just exhausted, but it's a great house. Can't wait 'til we've finished though! Gabe went and picked up our new kitchen cabinets today, so hopefully by the end of tomorrow we should have a kitchen!! Can I just tell you how much I'm looking forward to having a kitchen?!! Oh yes, can't wait! And the cabinets look beautiful too! They're all out in the car port right now, and they're so pretty :)
Avery loves the new house, and still gets excited every time we get home :) "*Gasp* Wow! Is this our new home???" She loves it! It's been quite crazy getting her to and from school though, and I'm actually rather looking forward to the last day of school, which is next Wednesday, because then I won't have to be so rushed every day and I will actually have some time to do all the things I've been trying to do!
Brogan is now climbing stairs, which we discovered the day we moved into the new house! We took Avery upstairs to see her new room and left Brogan in the family room, and when we came back down he was 2 steps up! It was scary! And exciting of course, but scary because he was alone and could have fallen down! But he'd never even attempted to go up stairs before, so we didn't think anything of leaving him alone down there! He's not figured out how to go down yet, but he tries. He only has the opportunity when I'm around though because he's still trying to crawl down forwards...not such a good idea. But he's good at going up now! For a few days he'd get to the top and sit down too close to the edge so that he would have toppled over backwards down the stairs if no one had been there to catch him, but now he's doing better at moving away from the stairs before he sits down!
Avery had her lumbar MRI yesterday. She did so well. It was at 7:30am which was actually really nice because it meant that it was really easy to go without food or drink since she was sleeping the whole time she wasn't supposed to be eating, and she's never really been too particular about having breakfast as soon as she wakes up. She wasn't very happy when she woke up, and she didn't want to eat or drink anything for most of the day. It was nice because after her last MRI we had to take her to the neurosurgeon's office before we went home to get her shunt reset, but this time we just had the hospital page the neurosurgeon's office and they sent someone over to the hospital to do it while we were in recovery, so when we got to leave the hospital we were able to come straight home.
Anyway. I'm tired. I'm going to bed. The past 3 or 4 nights Brogan's decided that 4:30am is when our day should start. So goodbye 6pm bed time! Tonight he went to bed at the same time as Avery - 7pm - so hopefully soon we will fix that problem! I'm not the kind of girl that likes to start my morning at 4:30am, so that just won't work for me!!!!
Pictures of the house soon, I promise.