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Saturday, May 15, 2010
We're Still Around
So, it has been just one day short of a month since my last update and just a few things have happened :-)
On April 19th we headed down to Durham for a whole round of appointments. The first was more for fun. We got to see Dr. Kurtzberg and she gave us a tour of the stem cell facility. This was incredibly cool and I really wish I could share lots of pictures, but alas while my camera was with me, my memory card was not. So the best I could do was a couple of not-so-great pictures with my phone. This is one of the storage tanks for the cells:
These freezers contain liquid nitrogen that keep the cells frozen. There are quite a few of these freezers, but if you have cells stored at Duke, maybe your kiddo's cells are stored in this one!
We got the full tour and got to see the machines that separate the cells from the rest of the blood, the ones that count the cells, the ones that inspect the cells and all kinds of other things. This was incredibly interesting and honestly the next time I'll bring my camera and my memory card so that I can share it with you.
We spent the night in Durham and then headed out first thing in the morning for the audiologist. That went really well. Owen was in a good mood and they were actually able to do some real testing for the first time in a long time. They found that he is still responding to voice down to 10 dB, which is great. However they found that he was responding to low tones much better than the higher tones, so they gave him a new mapping with the higher ranges boosted by a bit. We have actually seen a noticeable difference in the noises that he makes. He has definitely added a number of new high pitched sounds to his repertoire since then.
We had a few hours between that appointment and the one with his neurosurgeon that afternoon. To pass the time we headed down the street to a mall where they have an indoor toddler playground. Everything there is sized for toddlers, and the floor is made from thick foam. Again, my camera wasn't in working order so I had to take pictures with my phone. If you are taking pictures indoors then your subject has to remain perfectly still in order to prevent blurring. Owen is never still, so the pictures are always blurred.
Owen was particularly keen on a fun-house mirror that they had on a wall:
It's a great place to let him get out and crawl for a while instead of just sitting in the stroller all day. Eventually the fun had to end and it was off to Duke for the neurosurgeon. This was just a checkup, and we didn't need a CT scan this time. The purpose was mostly to let the neurosurgeon see all of the great progress that Owen has made. Unfortunately they were running really far behind and by the time Dr. Grant came in Owen was fast asleep. But we did discuss what is next for Owen.
Owen has a Chiari malformation, which means that his cerebellum has been pushed down through the base of his skull by a bit. This hasn't ever caused any problem with his spine in the past, because his huge head gave lots of room to keep the pressure on the cerebellum low. When we made his head smaller in the fall, we also increased the chances that the Chiari might cause problems with the spine. If the cerebellum starts putting too much pressure on the spine you can get something called a syrinx - which is kind of like hydrocephalus of the spine. With a syrinx the CSF builds up in pockets in the spine and can cause all kinds of problems including problems moving ones legs, problems with swallowing and other issues. We knew about this risk when we did the cranial vault reduction, but they felt that the risk would be small given that Owen's head would still be fairly large.
A small risk is still a risk though, so we need to monitor the cerebellum and spine. The problem is that in order to monitor this situation you need an MRI. MRI's and cochlear implants do not play well together. In the USA the magnet must be removed from a Nucleus Freedom implant to have an MRI. In other countries it does not. Why this difference? FDA approval. Same device, but different protocols in different countries. The removal of the magnet is, in theory, a fairly simple thing. You make a little incision, remove the magnet, slap a band-aid on it, get your MRI, put the magnet back in and go on your merry way. The reality is that this is two sessions in the OR to be coordinated with an MRI which turns out to be next to impossible to arrange. We were several weeks into attempting to get this scheduled when our implant surgeon found out that there has been quite a bit of testing in the US on MRI's with the magnet in place. They have found that it can be done quite safely with the magnet immobilized using hearing aid molding material. We are in the process of getting all parties on board to attempt this - with all of the waivers signed for a non FDA approved procedure. A CT will not show a syrinx, removing the magnet risks infection to the implant and shunt, this new procedure is the least risk and hopefully we can get it all arranged.
Seizures
Yeah, we still have 'em. In addition to the one on April 15th from my last post, he had one on April 29th which did cause some breathing issues, but they weren't severe enough for him to go to the hospital. That one was associated with a nasty stomach virus. And he had another one today. We were having an absolutely wonderful playdate with Owen's friend Mya. We had just come inside for some lunch when he seemed to be having trouble sitting up all of a sudden. He went from woozy to just plain wilted and then he couldn't sit up at all. His eyes were open but nobody was home. Then he started to shake in one arm. We got out the Diastat. Just after I gave him the first dose he threw up a bit but the shaking stopped almost immediately and then he just went to sleep. He never had any trouble breathing. So, this one was not nearly as severe as most of them because it resolved itself with just one dose of Diastat and he never had breathing issues. He woke up after about an hour with a bit of a headache, but otherwise just fine. Big thanks go out to Mya's awesome Mommy for her cool head and help during the seizure, and to her Daddy for taking Mya so that her Mommy could help me. Big thanks also for being understanding about Mya's wedge which unfortunately caught Owen's lunch. I thought I'd get the bad news overwith so that I could post the fun that the kids had today.
Today Mya and Owen had a good time playing with Mya's musical instruments:
And Mya was kind enough to share her old tricycle with Owen so that they could ride together. These bikes have been adapted nicely and Owen just had a blast. Their feet are strapped to the pedals so that they get the motion of pedaling, but you can steer and push with the handles on the back.
It was a really fun visit - even with the seizure. Once we got home though he was back to his normal self. It was a nice day so we had a fire and cooked outdoors. Here is Owen being his happy little self:
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Friday, April 16, 2010
A Milestone of Sorts
We are home now, and I thank everyone for their well wishes. Owen is up in his own bed asleep now.
This was a pretty standard seizure for Owen with the whole range of vomiting, then shaking, 2 doses of Diastat and then trouble breathing. The bummer this time that landed us in the hospital instead of waiting it out at home was that he aspirated a bit whilst he was reliving his dinner. They were afraid this might cause an infection in his lungs and so gave him an antiobiotic by IV while he was still unconcious and couldn't take it by mouth. Nothing had materialized by this afternoon though and he had cleared his lungs pretty well by coughing so they sent us home.
The seizure started at 7:18 last night. This was Owen at 9:30 when he was finally breathing on his own so I felt I could take a picture with my phone. He is still quite unconcious and a long ways from waking up, but resting comfortably:
I finally got to lay down to rest at about 2:30 am. This is Owen at 3:30am looking for food:
Huge kudos go out to Miss Tessa today for not only taking care of Sammy while Owen was in the hospital, but also cleaning my house, feeding the dog and doing the laundry while I was gone. Daddy was busy helping his Daddy who is also in the hospital and so Tessa gave us all a hand. She gets a whole sky full of gold stars for the day!
And now onto our "milestone". We have spent quite a rather lot of time in the hospital with Owen and during that time I have watched other kids being wheeled around the floor in red wagons, which they seemed to enjoy doing. For all of our previous stays Owen has either been too sick to be allowed out of the room, or even if he was well enough he couldn't sit up well enough to ride in a wagon anyway. Well, today Owen was essentially fine for most of the day, they were just watching him to be sure he was OK. And he is also now quite capable of riding around in a red wagon. So, instead of spending a long day trying to keep an active child happy in crib, we went exploring instead in our little red wagon:
He doesn't look that happy in the picture, but those of you who know Owen will recognize that he is making his sign for cookie. Mommy had a bag of animal crackers in her hand and he felt that I should be focusing more on giving him animal crackers than on taking the picture. Why do I have animal crackers? Because they delivered french toast for breakfast and cheese pizza for lunch. Owen is allergic to eggs and milk, so we opted for some these instead. So, maybe it's not a dream come true, but it was nice for him to be able to get out of the room and roam around today - it made the time waiting for discharge go by much more quickly.
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We`re Outta Here!
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Owen is feeling much better. We are headed home.
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Why? Because Hospitals Are Fun
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Owen missed the hospital food so much that he decided to have a seizure last night. He aspirated a bit with this one so we have to stay til this afternoon to make sure his lungs are OK. He is awake and alert this morning though so we are hopeful that we`ll be able to go home this afternoon.
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Tuesday, April 06, 2010
The Go Bag
Today it was time to do one of those chores that comes up with the beginning of each new season. Clean the windows? Nope. Swap out the clothes in storage? Getting warmer! No, it's the restocking of the "Go Bag". You see we learned early on that hospitals stays can come at any time, and they are usually unplanned. And when Owen is in the midst of a seizure or shunt infection the last thing I want to be worrying about is "What am I going to need at the hospital if he has to be admitted?" Or even better yet, "What if he gets airlifted to a hospital three hours away from home again?". So, we have the "Go Bag" ready at all times so that if there is a problem we don't have to stop and think about these things.
The first item is actually carried in my purse, Daddy's wallet, his Aide's purse and is also tacked on the fridge for good measure. This is a little piece of paper that contains the highlights of Owen's entire medical history. There are a hundred questions that will be asked by the ambulance personnel, the ER people, the residents, the doctors and the many other people that will come through the door. They ask a hundred times partly to be able to train the residents and such, but also to make sure that there aren't discrepancies because you are stressed out. This is important, but it will also drive you up a tree. It can also be difficult to remember exact dates and such when you are under stress. So, instead of answering all these questions, I have a piece of paper to hand them that they can Xerox to their heart's content. And believe me, the docs, residents, ER people and ambulance people LOVE this piece of paper:
This just takes all the guesswork out of the whole process. The really important stuff is highlighted in blue to catch the eye, and I keep the weight up to date so that they can give him seizure meds without fussing about with a scale. I also always carry a copy of the latest CT scan in my purse. This can save all kinds of time if the hospital that he is taken to is not the hospital he usually gets his scans at - which is almost always true for us. We take him to the local hospital to stabilize him in an emergency, but he goes to Duke (3 hours away) for his normal care.
Next, onto the bag itself. Inside this bag:
are a change of clothes for Mommy, Daddy, and Owen:
I have thought in the past, "I can just get by with what I'm wearing for a few days if I really have to" - but that doesn't work if your child throws up all over your clothes (or his, or Daddy's) on the way to the hospital and it's kinda icky anyway.
Then we have basic necessities for Owen.
I am eternally amazed at how long it can take for people to find diapers in a hospital and I find it's best to bring a few so that the hospital staff have a few hours to make some appear. There are extra batteries for Owen's cochlear implant, a nose bulb because he can't blow his nose and hates it when he's stuffy, some of that cool tape that sticks to itself to keep pulse-ox's on, and some lotion because the low humidity in hospitals really dries his skin out - and it takes a doctor's order to get lotion in the hospital.
We also bring along some essential foods:
He doesn't usually eat baby food - but if he has had to be intubated we keep some on hand because it's easy on the throat. They are just a few flavors of apple cinnamon stuff that has more calories than regular applesauce. Owen is also allergic to milk and eggs and we can sometimes have trouble getting his soy milk (Silk) at the hospital, or even just food that we can be sure doesn't have milk or eggs in it. We bring enough to get him through a day or two until we can get the food supply sorted out.
We also bring a bit of nourishment for Mommy and Daddy:
because it's often 1:00am when things settle down and the cafeteria is closed. There is almost always a microwave on the floor somewhere that you can use to heat up a couple of meals and the high protein bars are good for snacking on until you can get real food.
We also bring some of the basics to clean up with:
because it can really help your outlook on life to be able to brush your teeth and if the above clothing was *compromised* on the way to the hospital by revisiting Owen's lunch, you will really want a shower if things got messy. Again, it could be the middle of the night by the time things calm down enough to be able to attend to such things and the gift shop will be closed - and you just don't want to pay the $5.00 they want for a toothbrush anyway. There are also a few feminine products because you can't guarantee that emergencies will occur during convenient times of the month.
Finally I have some entertainment for Owen when he wakes up:
and some for Mommy and Daddy for while he sleeps:
I have to re-pack every season to make sure the clothes are appropriate (and still fit Owen) and to be sure that the Silk hasn't expired. The idea is that we want to be able to get through the first few days without needing to leave the hospital if we don't want to and we want to be able to grab it all at a moment's notice. And with the laundry detergent we have made this bag last us for quite a while in the past once you can start getting food at the hospital. There are a few more items in there that I haven't shown - spoons and forks for eating and I think there is a deck of cards in there too, but you get the idea.
OK, so that part isn't much fun but I did think it was worth sharing as we've found it really reduces unnecessary stress. But, I'd rather end on a happy note, so I'll include some great pictures that I took of Owen and Sammy in their Easter finest. Check out the little guy and his expert standing at the tree:
I hope everyone had a Happy Easter!
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