Today I am telling the story of a Dad who stinks at fundraising. Yes, that Dad is me. The walk we’re participating in is on Sunday, 11/20, and I’ve barely started raising funds toward my/our goal. I won’t make too many excuses other than being the king of procrastination and not being a very experienced fundraiser. I promise that next year when we do the Hydrocephalus Association National Capital 5K Run/WALK I’ll be a much better fundraiser! I swear I’ll bother you much more often, and I’ll write long heart wrenching blogs about how badly I need your help with this. You will be powerless in the face of my future fundraising abilities. Toward the end I’ll have to ask you to stop giving. “Enough is enough! We have reached our (far loftier) goal!”, I’ll say.
But for today, I will just beg you to start giving. Please give. Please help us raise funds for researching the condition that has effected my son, and thousands of other people of all ages and backgrounds. For the most part, the treatment for Hydrocephalus hasn’t changed for about 50 years. The shunt is a great device, and I am so thankful for it. I haven’t been able to find where I read this originally, but if I remember correctly the shunt fails more than any other medical device. Something like 40% of them fail in the first year. I know we can do better. I know there are great minds around the world who can find this “better” if only we can give them the money they need to do the research.
So please go here and give whatever you can to help us. You can even go here and sign up to join our team for the walk. Then you can be my Yoda and show me your Jedi fundraising skills. We sincerely appreciate anything you can do to help.
There you go. This link should take you to our team page. From there you can click “Join Our Team”, then you’ll be on your way to awesomeness. We are really excited to do this, and the fact that you’ll be joining us will make this walk that much better. Of course, it’s our first time initiating something like this so we’re also a little nervous. Having you along for the ride will make things a little easier too. We even have someone doing some work on a t-shirt design for us! Once that’s all worked out I’ll get you all to email me your sizes so we can be awesome and look awesome.
We’ve set what we believe is a pretty reasonable goal of $1,000 for our team to raise. Of course, the more of you that join us the easier this will be to reach. I think it would be great if this turned out to be too conservative and we blow that number out of the water.
After Declan’s surgery the Neurosurgeon talked with us for a while about the device that Declan had implanted, a shunt. We talked about how great it is, and how many lives it has saved. We also talked about the fact that the technolgy really hasn’t changed much since it was invented about 50 years ago. He said that there is a lot of research going into finding new treatments for hydrocephalus, and hopefully someday even a cure. He said, “Wouldn’t it be great if he could just take a pill for this?” It would be great, and that’s why we’re doing this. I hope that someday people will no longer have to have brain surgery, in most cases multiple brain surgeries, for this condition. This will only happen if there are people researching new treatments, and this research will only happen if there is money to support it.
Thanks for doing something to make this happen.
As a reminder registration is $25. Kids 12 and under are free. The walk is on Sunday, 11/20. Check in is from 6:30 to 8:oo am at West Potomac Park in DC. The walk starts at 8:oo am. It will definitely be an early morning, but I’m sure the “crisp” November air will wake us right up. We’re thinking about getting a hotel room for the night nearby to avoid the early morning drive. If this is something you’d be interested in let us know and maybe we can all stay in the same place.
We are going to participate in the Hydrocephalus Association National Capital 5K Run/WALK on Sunday, November 20. I was about to do a family registration for Kayleigh and I when I saw that they also have a “team” option. “Team” sounds like so much fun I thought I’d post this to see if anyone else would like to join us.
First, yes, we will be called Team Awesome. This is what Kayleigh and I call our family. As in, “What a great thing that just happened. Go Team Awesome!” *high five. Maybe we’ll even come up with some horrible t-shirt design and we can all look silly too. Also, yes, we really do call oursleves Team Awesome.
Second, no, we won’t be running. You crazy?!?! I mean, maybe some other time, after I’ve lost a lot of weight, gotten into much better shape, and find a way to overcome all of the (completely reasonable) excuses not to ever run unless I’m being chased by something terrifying, then maybe I’ll run. This time around though, you can be sure that we’ll be lollygagging around the back of the pack and trying to enjoy ourselves.
On a more serious note, we are doing this to raise awareness of hydrocephalus and to raise money for research. One or two of every 1,000 babies born every year will have hydrocephalus. Shunt surgeries cost over $2 billion per year in medical expenses, and less than $5 million in public and private money combined is devoted annually to hydrocephalus research. So, join us! Registration is $25 per person. (Kids 12 and under are free.) Let me know if you’re interested in becoming a member of Team Awesome, and I’ll let you know what you need to do to start helping us raise money.
Don’t have time? Don’t feel like spending a day in DC? Don’t worry because you know if you can’t be a Hydrocephalus Association National Capital 5K Walker, you can always be a Hydrocephalus Association National Capital 5K Walker Supporter! We’ll let you know when we’re ready for donations.
Thanks in advance…we’re counting on you.
We got a very nice letter from the VA Department of Health yesterday. It was to let us know that they’d been notified that Declan has special needs, and that they have some programs available to help him. Reading through the information I found that he is is in a State database of children with birth defects.
I really have no idea if I will become used to this, but seeing the words “birth defect” really had an impact on me. Even now, typing them and “special needs” is on the hard side. I know that we are fortunate, and that so far Declan doesn’t seem to be having any develepmental problems, but nothing can change the fact that he has a birth defect. “Birth defect” will be something that he carries with him throughout his lifetime. It just seems kind of harsh if you know what I mean.
I am glad to have received the letter. We will almost certainly be taking advantage of some of the programs they were writing to tell us about. Life just loves slapping you with some reality every once in a while though, doesn’t it?
In other news, a few weeks ago Declan went for a follow up with his neurosurgeon. His shunt is doing what it does, and Declan isn’t having any problems with the fluid draining from his brain. The Doctor believes that the place where the fluid should be draining has a buildup of calcium and this is what caused the accumulation of fuid to begin with. It sounds like this is good news since this means it probably wasn’t one of the scarier things that can cause hydrocephalus.
There was “something” on the last MRI that the Doctor wants to keep an eye on. It could be “nothing”, but apparently is worth watching. Declan will be having another MRI in the next few months so they can take another look. I guess being on the edge of our seats wondering if “something” really is “something” or could just be “nothing”, is just part of being us now.
At least our kids are super cute! =)
Last Tuesday was Declan’s 4 month check up. Usually Kayleigh will send me a text when they’re finishing up to let me know how everything went. At around noon I hadn’t heard from Kayleigh so I sent her a message to see if they were done yet. Instead of replying, Kayleigh called me back and left a voicemail. When I had a chance I checked, and the voicemail just said something like, “Please call me back when you get this.”
This isn’t like Kayleigh, and really isn’t the kind of message anyone likes to get from a loved one, so I had to hold on tight to keep from jumping to some horrible conclusion. I called Kayleigh back and she said that there had been a problem when Declan got his shots. He screamed, and screamed, and screamed (just like every other baby who gets shots), and instead of tapering off and calming down, he just stopped all together. He stopped crying, he stopped moving, and he stopped breathing. You’ve probably seen kids do this when they’re really crying. That thing they do right after a long scream when they’re trying to catch their breath again. It sounds like it was like that, except instead of that long hiccuping breath at the end, he just stopped moving.
Of course the pediatrician was right there, and told Kayleigh to do just what we always did when Amelia used to get panicky. Kayleigh blew in his face and from what she told me he started breathing again, but immediately went to sleep (or you could say he passed out). The fact that he went to sleep made the Doctor a little nervous so she asked Kayleigh to stay in the office until he woke up. I’m not positive, but I’m pretty sure they were there for more than an hour. After he woke up Kayleigh called to let me know that the Pediatrician was concerned because Declan was looking a little pale when he woke up. She was going to call the Neurosurgeon and check in with them to find out if they needed to see Declan. I tried to stay at work a little longer after that, but was too stressed so I went home.
Once I got home I got to hear the whole story, and I found out that the Pediatrician was worried that Declan may have had a seizure. This was why she wanted to talk to the Neurosurgeon. We sat around wating for what felt like way too long wondering if we were going to need to pack up and make a trip to the emergency room, and then the phone finally rang. A nurse called to let us know that the two doctors had talked with each other and decided that it wasn’t a seizure. Declan is just an advanced little guy, and learned early to hold his breath until he passes out. As the title says, I’m pretty sure he was just messing with us. I can almost imagine him saying to himself, “This’ll show ’em to stick me with needles!”
While it was a scary time, at least we know Declan is healthy. Compared to Amelia (who was born 5 weeks early and was a tiny little thing) he’s a giant. He can already stand up for a few seconds if we put his arms on the coffee table. He acts like he’s about ready to start crawling any day now. Also, I got him to say Mama once, but he hasn’t repeated it since the one time. I’m sure he and his sister will be testing us many more times and giving us many more grey hairs, but I think we handled this test pretty well.
It has been too long amigos…sorry about that. I’m probably decompressing from all the stress I didn’t realize I was feeling at the time, but I have been indescribably tired these last few weeks. I guess trying to let it roll off your back has consequences. What lesson is there to be learned? I’m not really sure, except if you deal with something like this, be prepared for the crash. I suppose it’s not unlike the way you feel after minor-ish car accidents. Initially, you don’t feel so bad, but the next day you feel like you were beat up. I do feel kind of like someone has pounded my emotions in the face, and I still haven’t quite recovered.
Last week Declan went to see the neurosurgeon for his follow up apointment. His head is something like 2cm smaller! His stitches are healing well. His sutures (the places where the bones of your skull meet) are now overlapping a little as a result of his head getting smaller. It’s not terribly noticable, but when you look you can see the lines where the bones meet. This may take quite a while to correct, but it’s not really a big deal.
The Neurosurgeon did tell Kayleigh that he saw “something” on the MRI that no one had noticed up to that point. He didn’t seem terribly concerned, but he also didn’t seem to have much as far as details go either. Just “something”. Declan will have to go back again in the next few months for another MRI so they can look at “something” again. So…normal, normal, PANIC. This is where our assertiveness is going to have to kick in. Kayleigh is going to call the nurse and search for some more clarification on what “something” means. For now, we’re back to normal mode, since worrying won’t accomplish anything.
In another normal, normal, panic, normal moment, two Saturdays ago I watched Declan and Amelia solo for the first time since surgery. Kayleigh left for work and everything was going fine. Amelia was watching some Super Why and I was just started giving Declan his first bottle. About 2 minutes in he lost it. He cried, and screamed, and cried. When I tried to get him to drink a little more he’d just gag. He screamed, and screamed, and wouldn’t stop. Kayleigh called when she got to work and I let her know that I was starting to get a little panicky. She made some suggestions, and had to start work. (I’m pretty sure she was about to jump back in to the car and make the long trip back home.) So I’m walking around with irate Declan, jiggling him around, and trying to calm him down, then…he burped. Yep, that was it.
It was completely unlike Declan to cry for so long (15-20 minutes of crying seems like an eternity when you start thinking you may have to load up and head to the emergency room). He did the same thing the following Monday. We think he may have outgrown the formula we were giving him, and he was just getting tummy aches. Shoo!
(It’s been about another week since I wrote this. Instead of changing it, I thought I’d just add that Kayleigh did check on “something”. The nurse called right back this time. She explained that there’s a small fluid pocket in Declan’s brain. The Doctor isn’t worried, but does want to keep an eye on it. Another note: in the picture above, the larger line you can see on the left hand side of Declan’s head is a part of his shunt. A tube runs off of that in to his brain. On the left you can see one of the overlapping sutures.)
Until next time…yawn!
The hospital stay after Declan’s surgery was mostly uneventful. The staff all love him of course. There were all the regular nurse and doctor visits to check that he was recovering well. By the end of the first night he was basically back to his old self again, only with some new equipment. We could have checked out Thursday, but since Declan was scheduled for an MRI on Friday we decided it would be best to stay one more night. That way Declan wouldn’t have to have his IV taken out then reinserted the next day. Also, as the Neurosurgeon pointed out, an extra day of observation can’t hurt.
As expected, getting the little guy discharged took quite a long time. We did have a nice chat with one of the pediatric residents who we got along with particularly well. We asked a lot of questions we already knew the answer to because we were scared that we didn’t know them. Towards the end of the conversation Kayleigh said what were were both thinking. Half jokingly she said something like, “I’m not sure we’re qulaified to take him home. Shouldn’t a doctor or nurse be coming with us?” This prompted a slightly concerned look from the Doc, but we laughed and convinced him this wasn’t a serious question.
Then we went home, where we realized that we really don’t feel qualified. There are so many things to look out for. What if his stitches start looking strange? What if Amelia drops (another) toy on his head? What if he spits up? What if, what if, what if? What it all boils down to though, is that we have to adjust to a new normal.
In the new normal, we may have to make a visit to the emergency room at any time. We have to be prepared for that. In the new normal, a simple fever may not be just a simple fever. We’ll have to be prepared to call Declan’s Pediatrician any time he has a fever. In our new normal we have to learn to be always vigilant for signs that his shunt is failing, and there are many. In the new normal though, we still have 2 children that we love beyond words and we’d do anything for them. We also still have each other, and all of our family and friends who have been so supportive. These things will not change.
After some time passes, at least we can know that it won’t be “new” anymore. It will just be normal. We’ll grow used to the fact that everyday will involve the possiblity that we may end up in the hospital. The prospect that our son may have to have another surgery at any time will just be one more thing in a list of pieces that add up to who we are. We’ll grow used to it, and as long as we don’t become complacent, Declan will be just fine. He’ll likely spend more time in the hospital than the average kid, but so did I, and I turned out reasonably well.
I was going to end this with a quote about living with change. Instead, do you know a good one? Do me a favor and throw some inspiration our way.
By the end of our first appointment with the Neurosurgeon, he and his nurse rightly assumed that we would have plenty of questions later. The Nurse gave us her card, and even wrote on the front what she said was her personal number. She said once we got home, and had a chance to think of some questions we should call her back.
Over that weekend we spent most of our time scouring the internet. Again, the Hydrocephalus Association website was a great resource. We were able to get a lot of questions answered there, but it also brought up just as many new questions. Monday morning, two days pre-surgery, Kayleigh called and left a message asking the Nurse to call us back. We didn’t hear back from her. Hey, it’s Monday, maybe it’s her day off, or she’s very busy. On Tuesday, one day pre-surgery, Kayleigh called again, twice. We still didn’t get a callback.
We decided that most of our questions were things we didn’t really need to have answers to until after the surgery, so we stopped there. We decided this would be their one “get out of jail free”. We will let it go, this time. We then came up with our plan of action for the future. Kayleigh will be the point person when we need information from the neurosurgery team, and I will back her up whenever she needs me. If we have questions in the future, the Nurse will make time to answer them. We will call, we will call again, we will have her paged, and then we will find someone else in the neurosurgery department who does have the time to take a call.
Again, none of the questions we had were earth shattering, but it certainly doesn’t help build trust in the staff that we are working with when they fail to return our calls. We will be partners with the folks who will be caring for Declan’s well-being. We will bring our opinion to the table. We have no problem listening, and we have great respect for the many years that the doctors and nurses have put into being able to handle such delicate tasks, however, we will also be heard.
<Edit: I just wanted to take a moment to add that since this point we have had no problems reaching anyone, or getting answers to our questions. We have come to the conlusion that there may have been a problem with the phone system at this time. When Kayleigh has called back since then the voicemail box answered differently, and the phone tree leading up to the voicemail sounds a little different. There is a possibility that it was…umm…user error, but you can’t prove it! =) Either way, we stilled learned some good lessons from this experience. So, other than some potential problems on the technical side, the staff did nothing wrong on this one.>
For no good reason, I’m reminded of a “If you’re happy and you know it…” book we read with Amelia. The final pages had a picture of a shadow puppet on the wall that looked like a monster. The lines we sang were, “If you’re slimy and scaly and mean…oh never mind”. This day felt a little like that. It was definitely slimy, and scaly, and mean. There was no doubt that we wished we could just say, “never mind”, and stay home. As you now know though, our little boy was in a potentially life threatening condition. The only choice was to show up at the hospital that morning, the day after my 33rd birthday, and hand our son to some strangers to be wheeled off to who knows where so that they could open up his head and fix him.
So, of course, we showed up. At right around 6am we made our way to the surgical waiting room in the hospital. It was surprisingly full. It was also one of the most depressing places I’ve ever been. It wasn’t so much a waiting room, as a waiting hallway. A line of chairs running down an ugly, off-white hall filled with people and their loved ones waiting to be operated on. It was also, well, smelly. You wouldn’t believe me if I tried to describe the smell of body odor that permeated the entire area. I could only keep thinking, “Don’t they ever clean here?”.
“Luckily”, since Declan is an infant, we didn’t have to wait too long. Infants and toddlers always get first dibs on surgery. We were able to go back with him after just a few minutes. What would follow was a cavalcade of friendly, but definitely busy, people who would all be in some way involved in the upcoming surgery. They all had a smile, and a speech about their part in the operation. A few of them also asked us to sign some forms, many of which were our affirming that we’d been told that there was a possibility of a number of things going wrong, including the possibility that this may be the last time…honestly, I can’t even bring myself to type it, but you know what they told us might happen.
It was probably the hardest moment of our lives. Declan, even though it had been a long time since he’d eaten, had managed to fall asleep while I rocked him on the tiny love seat that was in the room. So, quietly I laid him down in the crib surrounded with blue metal bars, and quietly he was wheeled away from us. We walked along behind him for a moment, but at a certain point we had to turn right, and he kept going straight down the hallway.
We went back out to the smelly waiting room, and decided it wouldn’t be possible for us to sit there. Instead we made our way down to the cafeteria. We found a table and ate the steak and egg sandwiches we had brought along with us since we were too rushed to eat before we left. We waited. We pretended to be OK. We fiddled around on the internet, tweeting and updating Facebook to let people know what was going on. We waited. Finally, the restaurant-like pager they gave us went off.
We walked quickly to the elevators, both trying to keep from looking like we were about to break into a run. We went to the receptionist desk. She told us that the Neurosurgeon had come out looking for us, and that she’d call back to let them know we were there. Form behind reception’s plexiglass enclosure they pointed to a phone on our side which then rang. Kayleigh picked it up, said OK a few times, then hung up. They told her that everything went well. Declan was awake and in “recovery”. They’d contact us again when we’d be able to see him.
This time we found a seat in the horrible waiting room and sat on our hands for a while. The Neurosurgeon came out after a short time and told us that everything went well. He told us a little about the stitches, and reiterated that Declan would need an MRI next so that he could confirm that it was in fact Aqueductal Stenosis that had caused his Hydrocephalus.
We waited a little while longer, and our pager started vibrating again. We approached the receptionist again, and she pointed to the phone again. This time they gave Kayleigh directions to the Pediatric Acute Care Unit, gave us a room number, and said Declan would probably be there waiting for us when we go there.
Our little boy survived his operation. We were going to be seeing him again soon. We left as fast as we could, still trying to look like we weren’t in the biggest hurry of our lives, which we of course were.
If you think about it, it isn’t often in life that you face a situation where you have no idea what you’re up against. Even when these situations do present themselves there is usually a time of preparation. A time when you can do a little research, make a few mental plans, and just get used to the idea that something new is on the horizon. Not this time.
When Kayleigh took Declan in for his well baby visit we just expected that by the end of the day we’d know how fat our little boy had gotten, and how much “taller” he was. We had no idea that in a few days the ultrasound we’d take him to purely as a precaution would result in his being diagnosed with a condition that will likely be with him for the rest of his life. We left the Neurosurgeon’s office armed with a pamphlet from the Hydrocephalus Association, their website address, the knowledge that he’d be having surgery in a few days, and little else.
There were so many new terms thrown at us Hydrocephalus, Aqueductal Stenosis, Shunt, Endoscopic Third Ventriculostomy. There were so many stories out here on the internet to read. There was also still a job to go to, 2 children to bathe and feed, and plenty of dirty diapers to change. It was clear we had a lot to learn. We did spend some time browsing the internet, looking up some of these terms, reading a few (horribly scary) stories, but for the most part we would show up at the hospital on Wednesday, May 25, 2011 with only the vaguest understanding on what was going to happen once they put him in the cage-like crib and wheeled him down the hall. All we really knew was that they were going to be performing brain surgery on our tiny 2 month old little boy.
I can say with an absolute certainty that a large part of our lives will be devoted to learning about, and staying up to date on the condition that has effected our Declan. I am unspeakably thankful that we live in an age where you can copy and paste a term into a search engine and find abundant information on any topic. I can’t imagine what this experience would’ve been like just 20 or 30 years ago. So, even though we were completely blindsided by this, at least we know that we can go to Google at some point and get a push in the right direction.
(A note on the photo: This was taken at about 3 weeks of age.)