Well, first off I need to apologise for taking so long to post on here again! We found out in December that I'm pregnant again, which is wonderful news and we're so excited, but I was practically dead to the world during the first trimester! So I'm way behind on everything that involves doing anything - yes, even if it is just sitting at the computer and typing - that's how bad I felt! It's a good thing I know how worth it these babies are!
Anyway, I have decided that I need to not only catch up with all of Avery's history, but I also need to keep on top of what's happening now. So this post is about stuff that happened this week.
For a couple of weeks Avery's been acting more tired and needy than usual - she's even taken to wanting to take a rest in the morning in addition to her regular nap in the afternoon. At nights she's been waking up quite a bit, so at first I thought that maybe she was getting those last 4 molars, but I haven't been able to see or feel any lumps or anything on her gums, so I was a little concerned about it because I know that tiredness and lethargy can be warning signs for shunt problems. But since that was the only thing that was different I tried not to make too big of a deal of it. Then at the beginning of this week she started losing her appetite as well, and was eating hardly anything at meal times. Again, this sometimes happens when she's teething because I suppose chewing just doesn't feel good on sore gums, but I still saw no physical evidence on her gums that there were any teeth trying to push through, and so it added to my concern a little. By Wednesday she hardly even wanted to drink her milk, which was weird, so again I was worried but tried not to make a big deal of it. By Thursday though things were pretty much the same - she was very tired, and rested in her bed in the morning and then took another extra long nap (about 3.5 hours) in the afternoon, and then that night, since she had once again hardly eaten anything all day, I decided to give her some pediasure before bed just to make sure that she wasn't going to bed hungry. Whenever she gets a cold her stomach gets sensitive to milk and so she's had pediasure lots of times before and she's always liked it and it's always gone down easily. So she drank most of it, and then I put her down to bed, and a couple of minutes later she started crying and by the time I went to check on her she was halfway out of bed (she sleeps in a twin bed now) and she had thrown up all over the foot of the bed and the floor. Gabe took her downstairs and got her cleaned up while I pulled out the carpet cleaner and got to work on the mess in her room, and by the time I had finished stripping the bed and cleaning the carpet, she had thrown up again all over her Daddy. Gabe took her upstairs to have a bath (the second one that day) and I got to work on the mess downstairs. Anyway, it wasn't long after that that she threw up again, although by this time of course there was really no food left in her stomach so she was just throwing up bile and mucus. So now we had a little girl who had been acting tired and lethargic for a few days, had lost her appetite, was throwing up, and was screaming that high-pitched little scream we hadn't heard since she was a brand new little newborn before her shunt was put in. So of course we were worried, since these are all possible symptoms of shunt malfunction. So I quickly packed up a bag with extra shirts for all of us and some towels and Avery's bedtime cuddly toys, and we headed off to the ER. She threw up again while the nurse was looking at her, so they took us straight threw to a room in the pediatric section of the ER.
I don't need to go into all the details of our visit in the ER, but they gave her some zofran for the vomitting, asked us a billion questions repeadtedly, took x-rays of her head and lungs to check for pnuemonia, took blood and put an IV in her arm, took urine with a catheter (her least favourite part) to check for a urinary tract infection and did CT scans to check the size of her ventricles. It was a long night. She finally stopped vomitting after the zofran, which was wonderful, because by that time she had thrown up probably 8 times or so, and was quite dehydrated. Her lungs were fine, and she didn't have a UTI, but her white blood count was more than double what it should have been, so they thought she must be fighting of an infection of some kind. So finally after midnight sometime they were saying that since they had ruled out a bunch of the obvious choices, it may well be a problem with her shunts, so they started getting ready to check us into the pediatric ward for the night. I sent Gabe home to sleep, and by 3:45 or so Avery and I were finally settled into our little room up on the 11th floor, and she had a new IV drip to try to replace some of the fluids she had lost. She had managed to get a little sleep down in the ER, but not much, so she fell asleep very quickly, and I got some sleep on the couch next to her bed. At about 7:30am a nurse came in to take some more blood, and Avery woke up very sweetly and watched her stick the needle in her arm and take the blood, but she didn't cry at all, sweet thing that she is. The doctor from neurology (A lady I haven't met before) came up to see her and said that since her ventricles didn't look enlarged, she could still look up with her eyes, and she was acting a little more like herself that morning, she didn't feel a need to tap her shunt to check for an infection or anything, so that was fine. In my sleep-deprived haze (magnified by the fact that I'm extra tired because of this pregnancy!), I didn't think to ask her to check her shunt setting, since it had inexplicably changed its setting once before. That didn't occur to me til the following morning. Anyway, after that breakfast came and Avery had 2 bites of rice krispies and a sip of grape juice before she decided she was done. The group of pediatric doctors came in and said that her white blood count had dropped back down, so they didn't know what was wrong with her, but it looked like she was getting better, so they'd send us home. They said she was dehydrated and that on its own can cause vomitting, etc, although of course she wasn't dehydrated before she started vomitting, but what do I know??! One of the doctors came back a while later and said that she wanted to just keep her in til after lunch to make sure she was eating and keeping food down, but then not long after that the nurses came in to discharge her and we were home by 11:30am with a diagnosis of "vomitting" and instructions to give her a normal diet and keep her hydrated. I bathed her and tried to give her some lunch, but all she ate was a handful of goldfish and a sip of water, and then she was too tired to fall asleep, so I took her for a drive and she was asleep before we reached the end of our road. She slept for two hours in the car (I got some chili and a baked potato from Wendy's and ate it in my driveway, and then I fell asleep in the front seat while Avery slept! Everybody needs to sleep in their driveway once, right??) I woke her up a little after 4pm because I wanted her to be able to go to bed at her regular bedtime of 7pm. We drove to Kroger to buy some food I thought she might like, and I also got her some mineral oil because the pediatric doctor had recommended it for her constipation (we're trying to avoid meds for that), since she hadn't pooped since Wednesday and the dehyration was probably making it worse, and severe constipation can cause temporary shunt drainage problems, although Avery's neurosurgeon doesn't agree with that. On the way home Avery vomitted AGAIN - a lot. I called Gabe and he said to call her PCP, which I tried to do, but they had just closed (it was just after 4:30pm), so I called to doctor on call and she said it was probably a stomach virus so don't give her food but make sure she drinks lots of fluids. So we went home again, got her cleaned up, and then headed back to Kroger to buy some pedialyte. I managed to get hold of the PA who had looked after us in the ER (she just happened to be my friend's sister!), and she said that yes, it probably was a stomach virus, and said to call her back later if she was still vomitting and she'd get her a prescription for zofran. Avery wasn't having anything to do with the fluids we were trying to offer her though, and whenever we asked her where she hurt, she pointed to her eyes, so she must have had a killer headache. Again, kind of scary when your shunted child has a headache. ANYWAY! Sorry, I know this is taking a long time. Avery went to bed at 7 pm, and she slept all night til 7:30am on Saturday morning, and then she came into our bed and fell asleep again at 8am and slept til 9:30 or so, and then she got up and drank some pedialyte and sat on my lap on the couch and watched cartoons for about 40 minutes. She didn't want to get off my lap at all, and she just sat there very quietly and watched TV. Then she said she was tired and she went back to bed for another 3.5 hours, during which time her bedroom door was open and we moved our brand new king size bed upstairs into our room, which involved lots of noise, but she slept right through it, which is not like her. While she slept I managed to get hold of her neurosurgeon, since we were still very worried about her because she was sounding more and more like a little boy we had read about a few weeks before. Very sad story . (That is a wonderful sight by the way, I highly recommend becoming a member and making good use of the forums and information - it's so good to be connected to people who can help you through common experiences) By the time she woke up she had slept for 18 out of the past 24 hours. Her neurosurgeon was worried about her, and said that if she didn't show any improvement that day to take her to the ER again and have them do another CT scan to see if there had been any change in her ventricles since Thursday. If we didn't go to the ER that day, then we should take her in to see him at the hospital the following morning and he would check her shunt setting. Saturday afternoon, we ran out for about 30 minutes to buy some sheets for our bed, and Avery slouched in her stroller the whole time as though she didn't even have enough energy to sit up properly. After we got home her tummy was botering her, and she kept on straining as though she really needed to poop, so I kept on putting her on the potty, and she kept on pushing but nothing came out and she was getting really upset. Finally we put her on the potty again and she pushed and screamed and finally she managed to push out a couple of marble sized pieces and then a whole bunch of diarrhea, and after that she actually felt a lot better. She was still very tired, but she was acting a lot more like herself. There was no throwing up on Saturday at all, and we started feeling a little less worried. We still took her to see the neurosurgeon on Sunday morning though, and he checked her shunt and it hadn't changed, so then we really did feel much better. Sunday morning she started crawling around again and playing, and was generally much happier and more comfortable, although she still suggested that her head hurt when we asked her. She ate some little bits of bland food that day and had a few sips of water and/or pedialyte everynow and then. That night she threw up again though, so on Monday morning I took her to see her PCP and he diagnosed her with a gastrointestinal virus, and said that it would probably stick around til the end of the week. So yay for gastrointestinal viruses!!!! I would take one of those over a shunt malfunction ANY day of the week!!!
Blessedly, Avery does not get sick very often, besides the odd unavoidable cold. I don't know how I would cope if she got sick more often than she does, because the problem with all the signs of shunt malfunction is that they are also all symptoms of other "normal" sicknesses, so I think I'll always be worried that there's something serious wrong every time she gets sick! While I am not wishing away her toddler-hood, I cannot wait until she can more clearly tell us where she's hurting and what kind of pain it is, because that will make it so much easier to know whether or not we should be really worried! My goodness, I feel for all those parents of children who have to go through multiple shunt revisions, etc, because I cannot imagine how I would sope with the stress and worry of that. Thankfully, this time it is just a stomach virus. I hope and pray that we won't have to go throught the trauma of shunt problems, and that if/when she does need a revision or replacement, we will be able to catch it before it does any damage. May that be years and years down the line.
While we were still in the ER, they did some x-rays, and the technician took her puppy and did an x-ray of it too :) I thought it was cute :)