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Sunday, August 30, 2009
Normalcy and the Next Step
Owen is pretty much back to his normal, happy self again. He's still taking a bit longer of a nap than usual, but he slept through the night last night for the first time since his "incident" so we're happy about that. He's back to terrorizing the house in his walker and causing general mayhem. :-) Here he is today with his sister:
He's due to start preschool next week and I don't see any reason he can't go ahead with that. He'll be going to the same school as his sister. He'll be there three days a week to start so that we still have time for therapy and doctor's appointments, and he's just going for the mornings. Last year he went there one morning a week and he loved it. I think it will be absolutely wonderful for him to spend more time with other kids, and the teachers in that classroom are really amazing with him.
So, now that things are back to normal it's time to get back to the big question we were working on before our little stay in the PICU, and that is, "Can we make Owen's head smaller?". We have gotten wonderful advice from several Moms on where we might go. My heart wants to start in Nebraska because that's where my hydro-cyber-mom friends Sherri and Jill live. If you click on the link for Sherri you'll see her son Miles who went through this surgery recently and their surgeon did a great job. And it would mean that I could hang out with Jill and Sherri while Owen was in the hospital. I've also gotten help from Gage's Mom who has been very helpful and has suggested a center near her.
In the end though, we have decided to start with the Craniofacial Center in Dallas, Texas. Tabitha, my oldest hydro-cyber-Mom friend went there with her son Brandon a few years back and she was impressed. The plastic surgeon at Duke also highly recommended Dr. Fearon, who is the craniofacial surgeon at the Center in Dallas. The Craniofacial Center is a rather unique place in that they do not do any cosmetic surgery - no face lifts, breast implants, nose jobs, etc. They only work on congenital craniofacial abnormalities. Almost all other centers in the US and the world make their money on the cosmetic stuff and then do a bit of the abnormalities to keep it interesting. Dr. Fearon has dedicated himself to just helping people with congenital problems. And our first responses from them have been very promising.
When I first started seriously thinking about this surgery I tried to contact Dr. Stelnicki in Florida after reading this article. It was intriguing and I thought it was worth a look. I emailed the office and his assistant sent back a message that yes, they still do this surgery but no, they wouldn't talk about it over the phone. Even to ask basic questions I would have to make a trip to Florida - not a quick trip from Virginia. This did not give me a warm and fuzzy feeling. Things couldn't be more different so far at the Craniofacial Center. I called a few weeks ago asking if they did this surgery. Cindy, the nurse practitioner there, talked to me on the phone at length about how they work there, how to send images and such via email so that they could do an initial assessment without the need to travel and how they handle insurance. Oh, and yes, they do in fact do the cranial vault reduction surgery there. She said that most of their patients are from out of state or out of country and they do their best to do as much as possible before you come out so that you don't waste a trip if you can't have the surgery or can't afford multiple trips. I was feeling much better about our reception there.
So after we got Owen back home from the PICU, I sent the images of Owen's last CT and MRI, as well as some recent photos out to Dr. Fearon. Within a few days he had looked at the images and sent back a message that from the first impression it appears that Owen is an excellent candidate for this surgery. He was up front right in his first email that they have done 8 of these surgeries in the last 5 years. He explained his initial thoughts for tackling the back of his head first and then possibly doing later surgeries for the top of the head so that each individual surgery was lower risk. He wrote that if we were interested we should call Cindy back and she could set up a phone consultation where we could ask all of our up front questions. I really liked his tone and his up front offering of experience levels and such. No hemming and hawing with vague terms like "we've done lots of them" or some such. And if you look at his website it really appears that he encourages people to ask specifics and to expect clear answers.
And that is where we are now. I'm going to call on Monday to set up the phone consult so that we can ask all of the questions that we have running around in our minds. No decisions have been made yet on whether or not to actually do the surgery, but I feel we're getting a lot closer to having the information that we need to make the decision.
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Wednesday, August 26, 2009
We Are Home!
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We are all back together under one roof tonight. Owen is asleep - he's still napping a lot. He was thrilled to come home though. He started to look happy as we left the room at the hospital. As soon as we put him in his car seat he started to sign "All Done" over and over again. When we started up the hill that leads to our house he began his "happy dance" that he does when he's in a really good mood.
We have come home better equipped than in the past. We have a pulse-ox so that we can tell if his numbers are dropping during an episode, rather than relying on "Have his lips turned blue yet?". We have oxygen so that we can help him breathe until the EMT's arrive. We also have Diastat to give him if he should have another seizure. We have a very dedicated and wonderful volunteer rescue squad here in our little town, but they cover a big territory and there is only so fast they can get here - especially if they get a number of calls all at once like they did on Sunday night when we called. These items will buy us time so that he won't be in such bad shape by the time they get here. If we can just help his little body out a bit when things get started, it will put a lot less stress on his system and things might not get so serious.
Thank you all for your well wishes, we'll let you know how he is recovering over the next few days. But for now, we're just happy to be home.
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We're Going Home!
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They have given us the green light to go home. He's not 100% but he's ever so much better. He's smiling at people and playing with his toys. He had a good breakfast. He's still a bit weak and shaky but they said he has a few more days of that. As soon as all the paperwork is in order we're outta here. Yippee!
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Tuesday, August 25, 2009
Doing Better
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Owen didn't quite wake up enough to go home today but as each hour goes by he improves greatly. When he first woke up at 4:00 am he tried to put his finger in his mouth and kept missing and getting it behind an ear or up his nose. By this evening he could hold his head up with only a little support and could reach for his drink an actually get it in his mouth. He was also saying mama again by this evening. The neurologist says that it could take a few days to come completely back to normal. If all the blood cultures come back negative in the morning and his mental state continues to improve then we should go home tomorrow. Now Owen is asleep so Mommy is going to go do the same. Thank you for all the prayers, they are obviously working!
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Owen is Awake!
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Well more or less awake - awake but quite drunk would be the best description. He has signed for food and drank some juice and silk. He has played with some toys and even gave us a wobbly smile. His coordination is still off and he's very sleepy, but we are miles ahead of where we were yesterday. And I know he's OK because he snuggled up to me and reached up and stroked my face. That is always my sign after surgery or an incident that tells me Owen is back. He should be getting his EEG soon. If he continues to progress they will let him go home tonight or tomorrow morning
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Monday, August 24, 2009
Oh, He's Found His Finger
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Owen has moved the most that he has since last night. He rolled back and forth around the crib for about 15 or 20 minutes until he finally managed to get himself into his favorite position - flat out on his belly with his left index finger in his mouth. A decidedly Owen way to be! He hasn't opened his eyes up yet, but we're definitely seeing some Owen personality coming out.
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Previous post continued
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Please read previous post first.
Dr. Wilson also said that some kids can have seizures in response to certain viruses. The same chemical reaction that triggers the body to fight a virus can also trigger a seizure. He thinks this may have happened with Owen. O is stirring!! I need to go!
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Visit from the neurologist
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I have tried to post this a few times and failed. The bigger posts don't seem to work so I will post it in two smaller posts. We received a bit of comforting news. Owen's neurologist stopped by and he said that he is not at all surprised that O is still asleep given the amount of meds he got last night and the strength of the seizures. He poked and prodded him a bit and said that he just appears to be in a deep sleep. He has ordered an EEG for tomorrow just in case there is still any more abnormal activity, but he doesn't think he is still seizing.
To be continued...
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Breathing Tube is Out
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They took out Owen's breathing tube a little over an hour ago and he is breathing fine on his own. His sister was here a few minutes ago for a visit, she is staying with my brother for the night. Owen hasn't really woken up yet. He has stirred a bit but hasn't really opened his eyes. They did another CT scan eariler and that looked fine. His temp has stayed down with the Tylenol/Motrin mix. I got to sit and hold him for about a half an hour after they took out the tube so that was nice.
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On An Upward Swing
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Owen is still on the ventilator but they have turned it way down and he is picking up the slack on his own. They are hoping to extubate him in a few hours. He still hasn't woken up yet. Five doses of Adavan and one of phenobarbitol last night really knocked him out. Hopefully he wakes up soon so that we can tell if he's OK. His temp is staying down with Tylenol and Motrin. I'm posting from my phone so it doesn't send out emails about the updates for some reason, but I will update when he wakes up.
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Owie is still stable
Not much new to report, but I've gotten word from Michelle that Owie is still stable and still at the PICU. We'll post more details as soon as we know more.
- Uncle Richard
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Owen's Bad Night
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Mr. Owen missed the PICU so much that he has decided to make a return visit. I'll post details later, but essentially he threw up repeatedly after we put him in bed last night. He couldn't catch his breath and we called 911. He had two seizures at the hospital which was no fun. He's on a ventilator now and is still knocked out from the seizure meds. He's running a fairly high temp and they think it might be a virus. So we are at the PICU at Roanoke Memorial Hospital and he is stable. I'll post more as we learn more.
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Thursday, August 20, 2009
No Answers Yet...
We are home, yippee!
The upshot of today's meeting with the plastic surgeon was basically, "We haven't ever done that surgery here and we don't really feel comfortable in doing a case like Owen's as a first attempt. You should look elsewhere for more experienced people. " While I appreciate any doctor that admits that they might not be the right one when they don't feel comfortable with a procedure, I think we probably could have accomplished this discussion with an email. He did suggest some other doctors that have a good reputation and made suggestions for the questions to ask. I have also received great feedback from a few cyberMom friends and I'll be pursuing all of these leads in the upcoming weeks. Owen's neurosurgeon has also kindly offered to help us with our search.
So our feet are just on the very beginning of the path and we will see where they lead us in the upcoming weeks. I have faith that we will find the right answer for Owen - throughout our journey we have always seemed to end up where we needed to be.
On a lighter note, I thought I would post a picture related to yesterday's post. I said it was too hot to go to the zoo, so Owen had to settle for the tank at Red Lobster. It was a lively bunch and Owen sat there for a half an hour - with completely rapt attention - watching them crawl around:
I'll keep everyone posted as we take our next steps, and as always I thank you all for your words of encouragement!
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Wednesday, August 19, 2009
CT Scan Was Fine
Just a quick post to say that yesterday's CT scan showed that all is well with the shunt. There is always a blissful little period around a CT scan when you know that the shunt is fine and you can relax a bit. Dr. Grant was pleased with how Owen looked in general - Owen was in a good mood and was very interactive - and with how relaxed everything looked on the scan.
Today we just hung out around the hotel, watched TV, put our feet in the pool and just generally relaxed. I had originally thought I'd take Owen to the Natural Sciences Museum to look at the animals on our day off, but it was 95 degrees this afternoon. He had to settle for looking at the lobsters in the tank at Red Lobster instead, in the air conditioning. 95 degrees is too hot to be pushing a stroller around in, and Owen isn't a huge fan of the heat either, so even with our southern blood we opted to stay in for the day.
Tomorrow we meet with the plastic surgeon and the neurosurgeon to get their views on the cranial remodeling. We discussed it briefly at Owen's appointment yesterday, but tomorrow will be dedicated to the subject. I am anxious to hear what they think.
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Monday, August 17, 2009
Busy Week
This is going to be a busy week for Owen and I. We are in Durham, NC right now (3 hours from home). Today we had speech therapy in Greensboro (2 and a half hours away) - which he wasn't very much in the mood for. But even his worst sessions these days are producing way more than his best sessions a year ago.
Tomorrow morning we will be at Duke for a CT scan - his 6 month checkup for his new shunt, and then we'll meet with his neurosurgeon afterwards for the results.
Wednesday we have a free day at the hotel and then Thursday we will meet with the pediatric plastic surgeon at Duke. We are looking into the possiblity of cranial vault reduction surgery for Owen. This is the surgery where they reduce the size of the head. We had looked into this surgery a year and a half ago and dismissed the idea due to the risks involved. Certain things have changed to make us revisit this decision again.
The first is that his head size has continued to increase much more than we had hoped for. His head circumference is now 56cm, but that doesn't really tell the whole tale because it's really the height of his skull that is adding the most weight. It was one thing to wait for him to grow into it when we thought he'd catch up by the time he was three, but now that he's almost three we are realizing that he still has a long way to go. It is also true that while he seems so big to us, he is only in the fifth percentile for height - and some of that height is several extra inches of skull. I had hoped that he would get his Daddy's height (he's 6 feet 1 inch) but instead it looks like he's taking after his Mommy who is only five feet tall. So it's taking him even longer to catch up because of that.
The second is that we are realizing how much development is really being held up by his head size. We never realized how much physical abilities are tied into intellectual development until recently. I have written about this in the past as explanations for why Owen isn't able to do many things - for instance you don't learn to use your two hands independently of each other until you have to use one to stabilize yourself and the other to do an action, which you normally learn while holding onto something to help steady yourself as you stand. Each time he manages to reach another physical milestone, we suddenly see leaps in intellectual ones. If this could help speed up his intellectual development along with his physical development then it becomes even more of a consideration. And if it means that he could gain a few years of running with his sister and the other kids, that's worth something too. Owen can stand up and he can sit up, but only if you overcome gravity for him and get him upright. He is still unable to push up from the floor to a sitting postion, his head is just too heavy.
Finally I have met several parents that have been through the surgery and I have seen the benefits that it has brought them and so we have resources now that we didn't in the past to draw on. It's less abstract when you can actually talk to someone about what it was like. A big thanks goes out to Sherri and Maureen for putting up with all of my questions and answering them so willingly and thoroughly!!
We haven't made any decisions yet. This is a major surgery and there are a lot of things to consider. We are just starting the process, but hopefully we will get some answers this week that will at least tell us whether this is worth pursuing given Owen's specific anatomy, or if we should just stop thinking about it. I'll keep you posted as the week goes on.
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