Category Archives: Declan’s Diagnosis

Learning a New Normal

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.

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A Lesson in Assertiveness

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.>

The Big (Scary) Day

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.

Lots to Learn

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.)

Mourning Perfection…and Laughing

The 5 days between receiving the diagnosis and when we had to go back to the hospital for surgery were a little, well, blurry. It was hard to think, or to keep a thought for more than a few seconds. I’d start working on something, and inevitably after a few seconds my mind would wander:

  • Oh, we need to ask the nurse…
  • What if…
  • We need to make sure we bring…
  • What if…

At some point Kayleigh made the realization that one of the things that was causing us so much grief was that we were mourning the loss of our perfect baby. Only days earlier we would admire our chubby, cute, slightly big headed baby, and just bask in his perfection. He can do no wrong. He is perfect. Suddenly though, we were slapped in the face with the fact that even at 2 months old he’s just like everyone else. His body is…imperfect. He has a medical condition that is going to effect him for the rest of his life. He has lost this one moment of (perceived) perfection that most humans get to enjoy, even if they are completely unaware that they are enjoying it.

While this realization didn’t take away from the sadness that this mourning caused, it certainly made dealing with this situation a little easier. Being able to put words to a before unexplainable plaguing sadness was very helpful in giving us the ability to live with this sadness.

There is also, as there always has been and will be in my life, humor. Some people call it a coping mechanism, all I know is that for me, it works. Even during this time when we felt like we were marching in place waiting to get punched by a face tattooed Mike Tyson, keeping the mood light also kept me sane. Joking around about the size of Declan’s head, pretending Amelia was a pillow on the couch and then “crushing” her, these things helped quite a bit. One thing that sticks out over and over for us is something a good friend said to me in an email. It was something like, “Hopefully you’ll go to the Doctor, and they’ll find out that Declan just has a lot on his mind”. A line that will probably be with me forever, and now the tagline of this blog.

It Begins

On Tuesday, May 10, 2011 Kayleigh took our son, Declan, to see his pediatrician for his two month well baby visit. His head measured in the 90th percentile, so the Doctor thought it may be a good idea to have an ultrasound done to rule out any “problems”. Our daughter, Amelia, had the same procedure (although she was a little older) so we weren’t worried.

We showed up for the ultrasound appointment on the following Tuesday, May 17. We didn’t really have any worries. We’d been through this before, and were just going to rule things out. The truth is, we didn’t even really know what problems having a head bigger than 90 percent of his peers could mean. The appointment went well. The technician was nice, and we went home thinking, “Glad that’s over with. Let’s move on.”

Later the same day the pediatrician called. The Doctor who reviewed the ultrasound had called her and was concerned about what he saw. It looked like there may be too much fluid around his brain. “Don’t panic…it may be nothing…whatever you do don’t look this up on the internet. You don’t want to worry yourself before you know what’s going on.” That was the basic message we got. Declan will need to see a neurosurgeon who will review the ultrasound and give us a diagnosis.

The Neurosurgeon’s office called, set up an appointment for Friday, May 20. They asked us to bring the ultrasound. They said they also may be doing an MRI while we’re there. This was the scariest part for us, because he’d have to be sedated. We were still being pretty optimistic, “It’s probably nothing, and even if it is, it’ll probably fix itself.”

We packed up a diaper bag with some snacks for Amelia, who is two and a half, and headed downtown to the hospital to see the Neurosurgeon. We waited…and waited…and waited. We finally went back to a treatment room, and waited a little more. The Neurosurgeon knocked then came in and introduced himself. He then took a look at the ultrasound, gave us a brief explanation of hydrocephalus, and told us that the ventricles in Declan’s brain were “huge”. He pulled out his smartphone, did a little clicking around, and said Declan would need to come back to the hospital on Wednesday, May 25, and have a shunt surgically implanted in his head.

The Doctor’s Nurse also came in and talked with us for a while. They told us what a shunt does. They answered some of our questions. The Nurse gave us her number and said once we had a chance to think of some other questions to give her a call.

What we knew at this point was that Declan had hydrocephalus, too much fluid in the ventricles of his brain. Failure to have this treated could lead to a lot of problems…possibly death. They were going to make cuts on top of his head, behind his ear, and on his stomach. They were somehow going to take a tube and route it from his head to his abdomen so that this excess fluid would no longer be putting pressure on his tiny brain. We also heard somewhere in there (along with about 100 other facts) that the device they’d be implanting had about an 80 percent chance of failing. What?

So, we headed home to try and figure out what all this meant.