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Monday, November 23, 2009
A Silly Day and Tagged
Firstly, if you follow the Soldatke Family's Blog written by my friend Jill and are looking for my response to being tagged, you can find it on my family blog here.
Owen had speech therapy today and I just had to take some video. Owen just adores his speech therapist Jesse and they were having the best time today and I just couldn't resist sharing some of the laughter:
Enjoy!
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Saturday, November 21, 2009
Measurements, Meetings and Messes
First, let's start with some measurements. Before Owen's surgery I took a bunch of measurements so that I could compare them later. Here's how we are doing so far:
Weight:
Well, this is harder than you might imagine since right after the surgery he had gained weight from all the extra fluid and swelling. Now two weeks later the swelling is all gone, but he has also grown enough to make his sleepers too small on him again. So I have taken my best guess.
Before surgery: 13.96 kg (30 pounds, 12 ounces)
After surgery: 13.62 kg (30 pounds, 0 ounces)
So he lost at least 12 ounces during his surgery. I really couldn't quite think of what 12 ounces really meant, so I started going through the cupboards and weighing things on my kitchen scale. Here is what 12 ounces equals:
These three tangerines:
Or these five wooden blocks:
Or these two cans:
Now imagine only weighing 30 pounds and strapping those to the back of your head and trying to sit up!
Distance From Top of Nose to Base of Neck:
Before Surgery: 46.5 cm
After Surgery: 45.5 cm
From One Ear to the Other Ear Over the Back of the Head at its Furthest Point:
Back View:
Side View:
Before Surgery: 38.6 cm
After Surgery: 36.0 cm
Head Circumference:
Before Surgery: 56.5 cm
After Surgery: 54.5 cm
A few centimeters might not seem like much, but it really adds up when you are talking about volumes. If you pictured a perfect sphere with a circumference of 56.5 cm, then the volume of that sphere would be 3046 cubic centimeters. If you change that circumference to 54.5 cm, the volume of that sphere goes down to 2734 cubic centimeters - a difference of 312 cubic centimeters with just a 2 centimeter change in circumference! Of course Owen's head isn't a perfect sphere, but it give you an idea of how much of a change these measurements mean.
The numbers will likely settle down a bit more during the next few weeks - we were told 6 weeks to get your final results - but these give you an idea of why we are seeing such good results in mobility already.
Meetings
Remember Avery from yesterday's post? If you don't, scroll down and read it, and then come back. Ready? Josephine sent me her pictures this evening and I wanted to share two of those that were really cute. In this one I think it looks like Avery is telling Owen a secret that he is listening to intently:
But this one is my favorite. You might not be able to see the kids faces, but you really get a sense for the awe that they had of this Christmas tree:
Avery's Mom shared her wonderful thoughts about this visit here. Owen just couldn't take his eyes off Avery during our visit and we're both looking forward to future get togethers!
Messes
OT has not been going very well for Owen lately. His beloved therapist Vesna left to pursue a job teaching other OT's. We were incredibly sad to see her go, but we hoped for the best. Unfortunately Owen has not been able to bond with his new OT at all. Owen responds best to happy, bouncy, really outgoing people who aren't afraid to be incredibly silly. This just isn't the personality of the new OT and while I think she is very intelligent, she just isn't getting through to Owen. Most of his sessions these days are spent with him making his angry face and refusing to do anything useful. So, while we sort out that situation, it's up to Mommy to pick up the slack.
Our biggest OT challenge at the moment is tool usage. Owen is somewhere behind the cat in his abilities to use tools. If you hand him a washcloth he will examine every fiber in detail visually, feel the texture of it, and then eat it. If you hand him a mallet he will do the same. He does not push cars along the floor, he inspects them and then fiddles with the wheels. Spoons, toothbrushes, combs, crayons, etc are all just objects to be observed and tasted, but he does not connect them with any real purpose. This is the problem that we tackled today.
Attempting to place a crayon or paintbrush in Owen's hand, and then getting him to put it on a piece of paper generally results in a lot of screaming - so I decided to start small. If you are going make any progress with a toddler, you need to be prepared to get messy so I broke out the fingerpaints. He needed a bath anyway, so it seemed like a good time to make a mess. I really just wanted to calm him down with the whole process. When I first put his hand in the paint he got pretty upset. We did manage to get one handprint on the paper:
But he rather quickly found out that not only could you turn the paper blue, but you could also turn your feet blue and your hands and belly and THAT was FUNNY!
That picture also shows a benefit of his new mobility. There is no way he could have sat there and looked down at this own feet that way and seen the results of what he was doing before the surgery.
He no longer fought when I put his hands in the paint, he kept saying more(and yes I mean SAYING, he can now clearly vocalize "More") and happily spread the paint everywhere. Afterwards though, I think he may have had second thoughts. In this picture I think he is asking "Mommy, are you sure this says washable?"
And yes, it was washable paint so up my little smurf went to the tub to wash it all off. He left a trail behind him where he crawled as I was running the bath:
But the water turned blue and slowly the paint washed off:
I think we gained some ground in him not being so upset when you try to work hand over hand with him, and I think we had some fun too!
OK, that was a long one, but there's just so many exciting things happening right now!
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Friday, November 20, 2009
Meeting Avery
Things continue to go well in Owen's recovery. If you didn't know that he had been through major surgery just over two weeks ago, you certainly wouldn't know by looking at him. The only effects that we are still seeing is that he still tires a bit more easily. He started back in school on Tuesday, and he went in on Wednesday too. Normally he would go for Thursday morning as well, but he was pretty tired after Wednesday and so we decided not to push it. He was happy to be back with his friends though. He also resumed therapy this week, but they all took it pretty easy on him.
Today we got a special treat. Owen got to meet Avery. We found Avery and her Mom Josephine rather accidentally through their blog which you can read here. I had read her blog and she had read mine. We had passed each other in cyberspace with comments on different blogs that we both follow for the last few years. Recently though, I was reading Josephine's blog and noticed that some of the doctor's names were very familiar, and so was the name of the hospital that she was taking Avery to - they are the same ones that Owen has seen right near our home. So I sent her an email asking if they lived in the area and as it turns out they live rather close by and I pass right near their house every time we head down to North Carolina. So we just had to get together in person. Avery had a doctor's appointment right near us today, so we decided it was a good time to meet. We were also hoping that Jen from the blog The Lollipop Kids would be able to join us as well as she lives in the same town where we met, but she couldn't make it today. Hopefully we'll be able to catch her on a future meeting. Maria, if you're out there and you'd like to join us in this local hydrocephalus group - I don't have your new email address yet and if you send it to me I'll make sure you get an invite. I also have some friends whose children's have other disabilities - not hydrocephalus - maybe we should organize a bigger group too.
Anyway, it was a great visit. It's always good to get a chance to sit down with another Mom who understands the trials, tribulations, joys and wonders that you are experiencing with your special needs child. And Avery is just as cute as a button! We met at the mall which has a big open area with a fireplace and couches and, at the moment, a big Christmas tree. The kids had fun looking at the tree and crawling around while we chatted. Miss Tessa was kind enough to watch the kids while the Moms got a chance to talk. Josephine took a bunch more pictures than I did, and I'll post more when when she emails me hers, but I just couldn't wait to get up at least a couple of pictures of these two cuties:
I'm so glad we managed to pull of the meeting because it made for a very pleasant morning!
I also thought I'd show off some of the progress that Owen has been making. Check this out:
This is a rather big deal. You see prior to the surgery, Owen would attempt this little maneuver endlessly, always with the same result - he'd reach up, grab for the beads and then the weight of his head would make him tip over. He can now play with the toys on this panel with ease by propping himself up on one arm.
And then there is this:
He is pushing up with his arms fully extended. This is also something that was impossible three weeks ago. He simply couldn't be stable enough with his head that far off the floor - and this is the first step to getting him to crawl with his tummy off the floor.
And here's another wonder:
See how far down he is looking? And he is sitting fully unsupported. Attempts before the surgery to look this far down would eventually result in a toppling over - he would instead usually bring the book up to look at it.
And finally just a few more pictures for comparison to previous posts to show that the swelling is completely gone now. There may be some internally that will take a few weeks to go away completely, but there is no longer a puddle anywhere on his head:
Not bad for just being two days past two weeks since the surgery!
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Sunday, November 15, 2009
Back Home in Virginia
Well, we've been back home for five days now actually. You know how it is though, when you're in the hospital there is nothing to do but take care of the kid. When they are asleep - which is alot during the initial recovery - there isn't much to do but knit and update the website. Once you're home there's laundry, meals, siblings and all that sort of thing to keep you occupied. Unfortunately we have also had a sad event in our family in the last week - my father-in-law suffered a stroke a few days ago. I have been blessed with the best of in-laws. When the comedians get up and start making fun of their in-laws I never get the joke - in the 14 years that my husband and I have been together they have always made me feel welcome and loved in their family. We are hopeful that Grandpa will make a good recovery - but as most of my readers know, those first days with medical issues are full of unknowns and are the most difficult. I would ask that you keep these wonderful people in your prayers as you go about your week.
On a similar note I'd like to point everyone to Owen's friend Matthew who has had a rough few weeks. Matthew and Owen met when Owen was at Duke with a shunt infection and Matthew came in for his cord blood infusion. His Mom Jill has been a great friend throughout our journey and I'd like to funnel some well wishes and prayers their way too. You can read about Matthew here.
So, it's time to update on how Mr. Owen is doing - and he is doing fabulously! As you could see by the pictures in my last post, the swelling was already going down before we left Dallas and it has only continued to improve. The day after we came home he looked like this:
There is still a good bit of swelling there, but things are beginning to take shape. After he got home we started putting him back in his walker to get more upright time. This picture was taken on the 13th (surgery was on the 4th):
As you can see, it looks a bit different when he is upright. The puddle all settles down to the back instead of being evenly distributed as it is when he is laying down.
And here we are tonight. The swelling is almost gone, there is only a small puddle left. The top looks a bit pointy at the moment because the incision goes right across the top of his head and now that there isn't any swelling to keep it even, the line of the incision is making his hair stand up. That will settle down when the stitches disolve. And, of course, it still looks bigger when he's sitting up because what swelling is left still pools up at the bottom.
And then there is the mobility. The day after we got home we stood Owen up at a baby gate that has some toys on it for him to play with while he is in his walker - it's the same one in the picture above on the 13th. As you can see, the toy that he is playing with in that picture is set a bit low on the gate - this is so that he can reach while he's crawling. Owen stood up all by himself with no support, let go with one hand and reached down and played with that toy for the better part of a minute. He also looked down at the toy while he played with it. Owen has never been able to look down while he was sitting or standing because he would lose his balance. He has never been able to let go with one hand without losing stability very quickly and it was just as natural as could be - as if he'd always been able to do it.
And here is another wonder. Take a look at this picture:
I couldn't get the camera into video mode quickly enough to catch what happened next. He was sitting up tonight playing as I took the previous pictures. Then suddenly he put his hands down, scooted his feet out from under him and transitioned to a crawl. He has been able to do a variation on this in the past, but it took all of his energy and generally resulted in a faceplant at some point. Tonight it was just effortless. While sitting up he has been able to reach way out to the side, to where he's almost laying down, and then use his hands to walk himself right back up to sitting. Crawling was difficult for Owen, as was tummy time playing, because if he leaned too far to one side he would fall over as the weight became too much. He has crawled endlessly in the last few days and he hasn't fallen over sideways once. So, all in all it has been a very positive outcome for Owen. We can't be more pleased with how well he is doing with his new head.
Now that I am home on my regular computer I also thought I would get some more before and after pictures - I didn't have my full collection with my in Texas.
Before
After
Before
After
And finally I thought I would close with a couple of pictures that were just plain cute. Owen likes making fishy-faces:
And seems to be enjoying himself immensely:
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Monday, November 09, 2009
Our Last Evening In Dallas
First we'll start with the morning picture of what Owen's head looks like today:
Each day the swelling goes down more and more. There is still a good bit of fluid at the back of his head, but it doesn't seem to hurt anymore. In fact Owen spent most of the day feeling around on the back of his head and squishing it. It's just got to be weird! Owen was much more energetic today. On Saturday he slept most of the day, on Sunday he took two very long naps and today he only took one short nap. He hasn't run a temperature today either for the first time.
Tonight is our last evening here in Texas. Owen was getting seriously bored with being in the hotel room and we thought that he was up to a little outing. So we met his Uncle Tom and Cousin Ryan at our favorite Texas restaurant - Uncle Julio's. Read the family blog in about a week when I finally update it if you want the whole background on why that is our favorite spot, but for now I'll just post a few pictures so you can see how Owen is doing. He spent most of the time at Uncle Julio's doing his "happy dance". I have a great little video of it, but alas I do not have my video editing software with me. So here's a still picture to give you the general idea of him dancing with Daddy. He waves his arms and giggles alot:
I'll post the video when we get home. It was a nice visit and it was great to get out of the hotel for a little while. It was really awesome to be able to have a chance to reconnect with my brother-in-law and nephew who I haven't seen in two years.
Uncle Tom and Cousin Ryan (along with his Aunt Lori and Cousin Shannon who are still at home in Colorado) gave Owen a stuffed Curious George. When we got back to the hotel we put it out on the bed. Owen immediately crawled over to it and put his head down on it with the world's biggest smile. I didn't get the camera out in time to catch the smile, but it's so awesome to see him able to motivate himself like this:
I know that it's going to be a little while before I can post again once we get home and get back into the normal daily routine, so I want to make sure I say my Thank You's now. A surgery like this is requires a great deal of logistical planning and a tremendous amount of help from others - it just isn't possible to do it all on your own.
So, we'd like to thank Grandma and Grandpa Q for moving down to Virginia for a couple of weeks to take care of our daughter Sammy. Thanks Mom for helping me get the house clean and laundry done before we left. Without their help this simply wouldn't have been possible. And we thank Uncle Richard and Aunt Christie for helping with Sammy while we were gone too.
We want to thank our amazing daughter Sammy for being such a good girl for Grandma and Grandpa. I also wanted to share some of the things that she did for us. We think so much about the child that is going through the surgery, but we have to remember that it is difficult on the siblings as well. As worried as she was about her brother, she was also worried about her Mommy and Daddy. At one point I had commented that it actually gets pretty boring just sitting and watching a kid that is sedated and recovering. She didn't want us to get bored, so she spent countless hours making worksheets for us to do while Owen was sleeping:
She hand-drew about 10 pages of these worksheets that she copied from books that she has, or made up on her own. It took her days of hard work. Sammy is an amazing little girl and we can't wait to see her again tomorrow. Thank you Sweetie for all your hard work - we were never bored thanks to you!
Owen's aide Tessa gets a big thank you for taking such great care of Owen in the weeks before we left so that I could make the countless phone calls and fill out the miles of paperwork that were necessary to make this happen.
Of course Uncle Tom gets a huge thanks for ferrying our stuff around and helping to provide distractions while Owen was in the hospital.
The pictures on these updates have been made possible through the kindness of my bestest and oldest friend Val who rushed this memory card reader:
to us when she found out that mine quit working while we were in quarantine and couldn't get out to buy a new one.
The doctors and nurses and support staff here at Medical City have all been amazing and worked so very hard to make both Owen and us as comfortable as possible and did such an amazing job with his surgery. We couldn't have asked for better care.
We received great support from Owen and Sammy's teachers at Tall Oaks Montessori school as well and we very much appreciate that.
Finally we want to express our deep gratitude to everyone who prayed for Owen or sent him well wishes. The constant flow of support from friends and family through email, blog comments and phone calls really made a huge difference. We know that all of these positive thoughts contributed greatly to the success of Owen's surgery.
I'll still be posting in the days to come of course, but I really wanted to make sure that these thoughts of gratitude were not lost in the hussle and bussle of everyday life. With all of our hearts - Thank You!
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Sunday, November 08, 2009
Having a Good Day
Last night Owen snuggled up with his favorite bear right after his bath:
Today has been a good day. This was the view of Owen's head first thing this morning. He's looking so handsome with the extra hair being trimmed.
His head still feels like a waterbed, but the swelling is going down quite a bit every day. Owen seemed much less sensitive to his head being touched today, and he was in a good mood so we decided to take him out for a walk. It was in the mid-seventies here today and partly sunny so we just couldn't resist getting him out into the fresh air. Just two blocks away there is a Boston Market. Daddy really likes Boston Market and we used to go when we lived up in NY, but there aren't any in VA so we decided to walk there and pick up some lunch.
Tonight he's sitting up in his chair just babbling away and having a good time. He has only taken two naps today and so has been awake most of the day, for the first time since the surgery. Owen's mobility improves by the hour it seems. His crawling is already better than it was. This afternoon he woke up from his nap, crawled across the bed and put his head in my lap. He's never done that before because he's never been able to get his head that far up. It was the sweetest thing ever. Setting up surgery half a country awake and dealing with the stress of major surgery - a complete hassle. Having your son crawl over and curl up in your lap - priceless!
I also wanted to send out a quick shout-out to our daughter Sammy. I know she's been reading these updates with Grandma and Grandpa and I wanted to say Hi!!! We miss you and can't wait to see you on Tuesday.
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Saturday, November 07, 2009
Catchin' Up
All is going well with the recovery. I realized that I have a bunch of pictures from the last few days that I haven't had a chance to put up. Our laptop is rather antiquated and it takes some real time to process pictures on it and I just didn't have time yesterday. So I'll pick up where I left off with the pictures as I tell what's been going on.
I posted some pictures from Thursday (the day after the surgery) morning. But there were some more from that afternoon. Owen made his first excursion out of the bed to take a little nap in the sun on Daddy:
Later that evening we had a nice visit from Owen's Uncle Tom who has been so helpful on this trip:
Moving on to Friday I got a few pictures of Owen's head with the swelling at its height:
You can compare this with when he came out of surgery:
The back of his head feels like a waterbed - it's all squishy and when he moves you can see it sloshing around. Here is a view of his head with him sitting up, which he was able to do by the afternoon:
And here's a picture of Owen trying to eat with his hand all bandaged up to keep the IV in place:
Shortly after this picture we gave him a bath, which is required before you leave the hospital - and we have to carefully shampoo the incision every day for a few weeks. Once his bath was done they deemed him fit to leave the hospital and we headed back to the hotel. This was a day ahead of schedule, but since the swelling wasn't nearly as bad as it usually is with this surgery he didn't need the extra day in the hospital.
Which brings us up to today. Today we had a minor bump in the road. Owen threw up part of his breakfast, then slept for a few hours. At lunch he threw up a bit again. And finally I tried to feed him some Silk (Owen is allergic to milk) in the afternoon and he threw up part of that too. So I called the doc because it seemed that every time we sat him up to eat he would get nauseous. Dr. Fearon was awesome and called us right back and set up a CT scan just to be sure that everything was functioning. We walked the two blocks over to the ER and got him scanned. Dr. Fearon looked at the scan and then had the neurosurgeon on call (Dr. Sacco) take a look as well. They both agreed that his ventricles looked smaller - which is expected as things calm down from the surgery - but that there was no sign of overdrainage. It appears that Owen is still adjusting to the pressure changes in his head, and they are magnified as you sit him up and lay him down. The doc in the ER gave us a prescription for some stuff that should help with his nausea while he adjusts. We haven't used it yet though, I tried my old faithful remedy of peppermint tea and that seemed to settle his stomach well enough that he ate dinner without throwing anything up. We'll save the prescription in case the peppermint doesn't work, but it has never failed me yet.
So, here is a picture of Owen sitting up before dinner tonight:
He always perks up after you've run him to the ER and gotten all worried :-) The swelling is way down today and he has really increased his mobility so the pain must be considerably less in his head. He still doesn't like it as you lay him down, but he was resting his head on us when he was sitting up and resting his head against the stroller without minding it - which he couldn't do yesterday. So all is well and he is recovering nicely. I think tonight I will give him a haircut. They wanted the hair long for the surgery so that the incision wouldn't show as much, but those curls on top are really getting out of hand. It's time to tame them down just a bit!
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Friday, November 06, 2009
Just Sleeping
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Not much new to report. Owen is still doing well. We moved from the PICU out to the regular floor yesterday in the late afternoon. Unfortunately it was just as he was falling asleep and he woke up as they moved him - so no nap. He ate a light dinner and fell asleep around 6:00pm and slept until 3:00am. I fed him at 3:00am and then he went back to sleep around 5:30 am with a bit of Atavan. He woke up and ate some breakfast around 7:00am but was really out of it. He went back to sleep after breakfast and we haven't heard from him since. The Atavan is out of his system by now and it seems to just be a nice healing sleep. I think his pain levels have lessened to the point where he can achieve a deep sleep finally.
His temp has been up and down today, topping out at 102.something and then heading back down a few times with tylenol and Motrin. They have actually suggested the possibility of letting us out of the hospital tonight - but I think he needs to wake up and show them the alertness that I saw at 3:00am for us to do that. If we don't leave tonight then it will probably be in the morning. We are in Texas until Tuesday either way so it doesn't really matter.
So, I been knitting and watching TV this morning and Daddy has headed down to get us some lunch. There is still a good bit of swelling in the back of his head, but it will take weeks for that to disappear. Usually they swell so badly that their eyes close and such, but that didn't happen with Owen. We saw another kid here that had their head done just a couple of days before Owen and their eyes looked like golf balls and the skin was stretched tight with the swelling. We expected the same for Owen, but thankfully it doesn't appear that it is going to happen.
We are in the "exciting" phase of the recovery where you just sit back and watch....
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Thursday, November 05, 2009
CT Scan Comparison
Owen continues to become more and more alert and his pain seems to be lessening as the day goes on so all is well.
I just finished what I thought was an interesting little project. I took the images from the CT scan that they did a few hours ago and put them side by side with the images taken before his surgery and lined them up as close as I could with them being from two different scanners. The change is rather remarkable...
You can see these images by clicking here. Enjoy!
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A Quiet Night
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Last night was a pretty quiet one. Owen slept on and off all night long. He started to run a fever in the late evening so we've been giving him some Motrin to stay on top of that. A temperature is expected within the first few days after any surgery that requires general anesthesia and isn't an issue.
Owen is definitely sore, but he's needing less and less morphine now. He went from 1:00am to 10:00am without any morphine, but they gave him some at 10:00 because they were taking him down for a CT scan and moving still causes him quite a bit of pain. The scan went fine. Dr. Fearon (the plastic surgeon) said that it looked good and cleared him to go to the regular floor. Dr. Swift (neurosurgeon) just called and said that he agreed that the CT looked awesome.
Owens numbers all look good. He's keeping his hemoglobin up on his own so it doesn't look like he'll need another transfusion. They took his cather out this morning and he's very happy about that. They took out his arterial line (an IV that is hooked into an artery rather than into a vein. It is used to continuously monitor blood pressure.) in anticipation of being released from the PICU. Owen ate a good breakfast and has kept it down. Last night he had some juice and then thought better of it and returned it back from whence it came. He seems to be over that now. At the moment he is resting comfortably.
Right now he only wants to lay on one side. They have told us that we will have to start being meanies and forcing him to turn over so that his head doesn't end up oddly shaped.
We have had a number of people ask "where are the bandages?". They don't use bandages here. They believe that covering up wounds just traps bacteria and promotes infection. Since they have an incredibly low infection rate here I am inclined to accept their word on that. They just come along every few hours with some peroxide and Bacitracin to put on the stitches. They also don't cut any hair when they do the surgery, so he isn't missing a big strip down the middle.
I'll close with a couple of pictures that I took this morning. The swelling is starting to increase (as is expected) so his head is looking a bit bigger and his left eye isn't opening quite as much as the left. He's still looking great for what he has been through and the nurse tells us that he has less swelling than a lot of kids do at this point.
Here is Owen signing for breakfast, or trying to with his bandages:
And some current views of his head:
But in the end, he's still the same affectionate little boy:
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Wednesday, November 04, 2009
Pictures
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We have been into see Owen and he looks great. He's obviously a bit uncomfortable but they are managing his meds well. He has signed for food and is sucking on his finger in a very typically Owen fashion. The amazing thing though is his mobility. Even drugged and uncomfortable he obviously already has better mobility. I joked a few weeks ago that when he woke up he'd probably try to sit up and end up vaulting out of the bed because he was used to lifting such a heavy head. I was joking but it turns out to not be too far from the truth. He's been able to haul himself all over the bed much more easily than he's ever been able to move before.
So now for the pictures. I wanted to get a few before the swelling set in so that you can get an idea of where we'll end up. There is a fairly good puddle there in the back of his head already, but the results are still amazing. Here are two pictures from this morning before the surgery:
And here is a side by side of Owen in May, and Owen now:
Yeah, I'd say they managed to take a bit off! We were amazed because we just weren't sure how much they would be able to take off, and honestly whether or not we'd even be able to tell. And the back will go down a bit more in the weeks to come as the swelling goes completely down.
He is sitting up drinking some juice now and he's doing really well all things considered.
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The Surgery Went Well
Both Dr. Fearon (plastic surgeon) and Dr. Swift (neurosurgeon) came out and spoke to us. They said that the surgery went very well. They were able to take off just about an inch from the top and took out about 150 ml of fluid. The Chiari didn't seem to present as big of a problem as they feared so they didn't have to take out the extra bone at the base of the head that they were planning to. They did have to give him a small blood transfusion, but that was to be expected. Owen is already starting to wake up and move around and we should be able to see him soon.
Dr. Swift has already called Dr. Grant, Owen's normal neurosurgeon to give him an update as well. I'm happy that he took that step since Dr. Grant will have to take care of Owen long term.
So all is well and we can't wait to see him. The next few days will be a bit rough for Owen. We are told that it isn't really painful, just uncomfortable. There will be a great deal of swelling that will peak in about 48 hours and then start to go down. It is expected that his eyes may swell shut, but that shouldn't last for long. They are looking more like their normal selves within a week, but start looking much better by 72 hours.
We'd like to thank everyone for their prayers and kind thoughts through this time, I am certain that they helped.
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Surgery is done
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We haven't talked to the surgeons yet, but I called in and they have closed him up, turned him over (the surgery was done with him on his stomach) and they are washing his hair. We expect that we'll be able to talk to the surgeons soon. Thank God.
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Surgery is going well
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I just called in for a checkup. The nurse said that he's nice and stable and they are "on the home stretch". He said they are irrigating now and that they expect him to be out and up to the PICU within the hour. We'll update after we've talked to the surgeons.
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Surgery Continues
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And that title will probably persist for a while as the surgery will last 4 to six hours. They actually made the first incision at 9:23am. I'll probably give it at least another hour before I call in again because there won't be much to report.
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Surgery is about to start
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I just called in. He has all of his lines in, he's in position and he's getting his final hair washing. They expect to start the surgery in five minutes. It's great, you can call into the OR anytime and talk to the nurse. They also have computer monitors throughout the hospital that are updated with what they are currently doing. We should get our next update in 45 minutes.
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He is in the OR
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They have taken him back to the OR. It will take about an hour and a half to prep him. We expect our first update around 9:00am.
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At the hospital
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We have arrived and checked in. They said that they will come in about a half an hour to get him.
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Tuesday, November 03, 2009
A Long Day
Well our long string of pre-op Dr. appointments is over. The first three quarters of the day went quite well. They did the usual of height, weight, blood pressure and explaining where to go and what to do tomorrow. They took the usual blood for testing. They also did some things that we hadn't experienced before. They took detailed pictures by a professional photographer for use during the surgery. Then they measured every possible aspect of his head with different sets of calipers. When all that was done we went to meet with the plastic surgeon Dr. Fearon. That meeting went well. He explained the procedure in detail again and checked out Owen's head. We left in a pretty good mood.
Then came the meeting with the neurosurgeon, Dr. Swift. He brought up Owen's MRI and CT scans that we had brought with us and began to discuss the complications that he saw. We thought that he had already seen the scans a month and a half ago when we asked if Owen was a candidate for the surgery, but as it turns out he saw them for the first time today. He explained that Owen has a Chiari malformation, which is something that we had never specifically discussed with Owen's normal neurosurgeon. Before today it didn't really matter - Owen does not have any of the symptoms that are usually associated with a Chiari. Like everything else with hydrocephalus, a Chairi malformation can cause everything from severe symptoms to none. So up until now it wasn't really all that important I suppose to know this. However it does make a difference for cranial vault reduction surgery.
If you follow the link above you'll get a more detailed explanation of what a Chiari malformation is. Basically the problem is that when they change the shape of the head it is possible that they could put more pressure on the parts of the brain that are already too far down in the skull. So he is planning on removing some bone at the base of the skull to allow the base of the brain some room to compensate. This, of course, increases the risk of the surgery. He said that these problems would happen within a day or two of the surgery if they were going to happen. If they do, then they would have to go in again to fix them.
This was a very long appointment because Dr. Swift took a great deal of time to describe everything to us in great detail. We considered the possibility of just going home. After much soul searching though, we decided to go forward. Owen's frustration with his inability to get up and go has been increasing daily. We really feel that his quality of life is being heavily impacted by the size of his head and that there is a possibility of a great deal of benefit for him from this surgery. But we really wish that this had been found a month ago rather than today at the last appointment 12 hours before the surgery.
So the plan is for surgery to start tomorrow morning at 7:30 am. I'll be updating the progress from my phone tomorrow. Keep us in your thoughts and prayers tomorrow please, it's going to be a rough, but hopefully rewarding day.
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Monday, November 02, 2009
We Made It To Dallas!
It's been a long day, but it went very smoothly. Big kudos to American Airlines for the smooth process through the airport and on and off the plane. Owen did really well on the flight here:
He enjoyed looking out the window and seemed to be happy to be seeing something new after a week and a half quarantined at home.
Much of the ease of the trip here was made possible by Owen's new stroller. It's a Bingo IUS stroller from Kids Up.
It's big enough to fit him, unlike his old stroller that I just bought at Target. It also has an abductor so he can't slide down all the time. You can remove the grap bar and replace it with a tray so that he can eat. It also fully reclines so that we can change a diaper and so his little belly can get relief on days when he has to be in the stroller for a long time. When I get back I'll explain the long saga of why it has taken so very many months to get this stroller, but we are just happy it got here in time for this trip.
Uncle Tom met us on our way down from the airport and delivered the packages that we had sent out last week. We can't thank him enough for doing that for us. It really helped not having to lug a lot of stuff through the airport in addition to Owen and all of his gear.
Sammy is at home, likely being spoiled rotten by her grandparents :-)
Finally you can see Owen's sleeping arrangements. Owen is now too big for the porta-crib, but he's not ready for a plain old bed in a hotel room - he'd fall out. So I got him a kid's air mattress. It's a nice size, but he is a little Houdini and he tries (and succeeds) to climb out - the sides are only a few inches high. So we have taken the cushions off the sofa and put them under a blanket to make a barrier all the way around:
Tomorrow we have a full day of doctors' appointments. We have to meet the plastic surgeon, neurosurgeon, billling people, registration people and an anthropologist. We're not exactly sure what the anthropologist will do - I was told that it has something to do with taking detailed measurements of Owen's head. There is also an appointment called Photography and Media and I'm not quite sure what that's all about either. Looking for nice before and after photos I guess.
I'll post again tomorrow after all of our appointments to let everyone know the final plan.
And, of course, I have to say Thank You so much to everyone that has sent us prayers and well wishes. We believe in the power of positive thoughts and we can't thank you enough for your support of our little boy!
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Sunday, November 01, 2009
Almost Ready to Go
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We're just about packed and ready to go. The 200 pages of forms from the doctor, flight, hotel and car rental confirmations and all such are in the bag.Owen's new stroller arrived on Friday so he'll be able to travel in something that actually fits him and suits his needs.
Tomorrow morning we leave here at 6:00am to catch an 11:30am flight out of NC. This post is a final test of the software so that I can post from my phone. We have the laptop for posting pictures, but I'll use the phone to post during the surgery. Surgery is scheduled for 7:30am on Wednesday morning.
Now the fun really starts!
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