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.


Syme Family News said...

You write so many things so easy to understand. I am so glad you were able to get some answers. We are so glad you are home. Give Avery loves.

Alex said...

Glad to have you guys back in town. And so glad that you found a doctor that you like and will take better care of Avery.

Anonymous said...

Great news you are home.

Can't believe they made you wait so long for a suspected shunt problem!

Glad to hear you have a more thorought Neuro!

Paulette said...

I am so sorry for the pain she went through, it must of been so hard for you all. thank goodness they found out how to sort it. hard times turn to better times. love Paulette. x

Annette said...

Thank goodness it's sorted and you have some answers. It's so good to be able to breathe more easily and not to see your child continuing to suffer isn't it? Let's hope she regains her strength soon.
Annette xx

Lisa said...

I cannot believe all that you have had to go through. It must be so sad for you to see your little Avery so weak. Here's hoping that she regains her strength soon :)

Pam said...

I just can't imagine how all this must have drained and frustrated and worried you. It has been an horrendous couple of weeks for you all. I'm so glad you have found someone you can now trust. Also you have learnt a lot , so should this happen again you will recognise the signs more easily. We can only imagine the pain poor Avery has been through and what an exemptionally brave girl she is. Make the most of your Mum being there and recuperate yourself.
Lots of love Granny

Hans said...

I'm glad this has had a happy ending. We'll keep on praying for Avery. Love Daddy

Carla said...

so glad to hear you are all home. Praying for Avery's quick return to strength:)

Lisa said...

I haven't heard from you in a while...I hope all is well :)