Oh Shunt!

 Feel free to substitute any letter for the ‘un’.

Apparently the 1 year anniversary doesn’t really mean anything. After my last post about our midnight adventures on Sunday night/Monday morning, Nickolas was pretty much back to normal. We kept watching the boggy part on his shunt, but his fontanel was still fine and his behaviour wasn’t all that different.

I was still sure he was teething, but nothing was showing up. I contacted the neurosurgeon by email Monday morning, but didn’t hear anything. No other symptoms so I wasn’t that worried. Really I haven’t checked his shunt site, and it’s all covered with hair now.

So it was back to work for me Monday and Tuesday night, sleeping in the day. Tuesday afternoon when I got up, Nickolas felt very warm to me. So I took his temperature. 40°C (for my American friends that is 104°F). That’s never good! We gave him Tylenol immediately and his fever came right down.

He cheered right up, his caths were still fine. Is this still teething? That is quite high for teething. But he was acting fine, so I didn’t call into work. He was fine staying home with Kyle. At work (where we ran off our feet and didn’t break all night!) I talked to the paediatrician that was on call with us, and she said we should call the neurosurgeon at Sick Kids and go in.

I knew that was what she was going to say, but I also knew that he wasn’t showing any signs of a failure or infection, but swelling at the shunt and fever were on the list. I could not find the neurosurgeon number, and Nickolas was home sleeping soundly.

I got home from work and immediately took Nickolas in the see the paediatrician (we already had an appointment) and surprise, surprise we were told to come in. So off Katheryn went to daycare and Kyle, Nickolas and I loaded into the car on our way into Toronto.

Writing the next day I can’t tell you how many hours we waited. But it was LONG! At first Nickolas was very impressed with this wrist band thing. He kept looking at it, and touching it!

We were in a room pretty quickly, and even saw the neurosurgeon fellow pretty quickly, but she said she was very busy and would be back. So we waited, and waited and waited.

We found out that Nickolas had a UTI – that explains the fever. And it was just waiting for the x-ray and the CT scan and they took blood. They attempted an IV because Nick was npo (nothing to eat or drink) in case they needed to do the shunt that night. Nickolas has really crappy veins. Really really bad. So we waited to see if he actually needed the IV after the first 2 attempts failed.

Nickolas was very hungry and was willing to eat ANYTHING!

But he was still happy.

So after a CT and x-ray they found that Nick’s ventricles were enlarged slightly and that the end of the shunt which is supposed to sit in the ventricles was out of place. So shunt revision here we come!

So not only does he have a UTI, but he also needs to have his shunt fixed! Poor guy! And I’m stubbornly sticking to the story that he is teething as well. Next time I look at 3 different choices of what something could be – I should think of simpler things!

So 3 attempts later we had a satisfactory IV (in the foot) and a potential plan. We were admitted back to 5C – where Nickolas recovered from his MMC repair (the initial surgery to repair his back) and his shunt placement. He remains npo, IV, vitals every 2 hours! Lets just say I had a very grumpy child who went between being very irritable that he was awake and couldn’t eat, and sleepy because he kept getting woken up. We are in observation with 2 other kids and nurses always in the room. I had a comfy rocking chair to try to catch up on my sleep – Only been awake for 36 hours!

Nickolas’ shunt surgery was considered an add-on. So he was probably going to be done at the end of the day unless something changed. But no, he still couldn’t eat. He was also started on an antibiotic for the UTI and the ditropan, but no Restoralax (Miralax) because it had to be mixed with too much water.

I think I’ve been driving the nurses crazy with my obsession about his bowels. An ER nurse told me that on the range of things that I should be worried about, his bowels were on the bottom of the list.

Definitely not said by someone who is a parent of a child with spina bifida.

We had just started winning our current battle with constipation when all of this hit, and I just know that when all is said and done I’m going to be sent home with a child that is going to be sooo constipated!

 

My only hope is that because nothing has gone in, stopping the Restoralax for a couple of days will not be as disastrous as I think it will be.

At the moment it is 6:30 pm on Thursday and we have been waiting for the OR ever since! NPO, vitals and eye checking every 2 hours, cathing every 4 hours (I’ve gotten students to do it all day) and a baby that really hates it when mommy is not at his side. Pretty much where I have been. And running on 50 hours of minimal sleep (I might have gotten about 2 hours in total last evening and night).

Wait! We just got called to the OR. I’m going to find a way to post this from here. And good news for my next post. I think I’m too tired to be worried (that much) and have been very happy with all the love and support I’ve gotten from people who have learned what is going on. I wish we weren’t here – but I’d much rather be here and getting things fixed, than at home wondering!

 

Thoughts and prayers are appreciated and thankful for!

 

Midnight worries

In the middle of the night, when you have a crying, screaming baby in your arms that will not calm down no matter what you do, certain things go through your head.
I should mention that I had said a couple of times that I think Nickolas is teething again. Tooth #7 is ready to make an appearance, but I have no idea what tooth #7 it is. So far the tooth has stayed out of sight, but with red cheeks and swollen gums and waking up in the night, I thought it was a no brainer. And I should probably mention that Nickolas does not do very well with teething. It takes about 3 nights of screaming and tylenol before the tooth breaks and he is happy again.

All of that being said, when it is 2am and you have an inconsolable baby trying to throw himself from your arms you are pretty sure it is a regular baby thing, but are also thinking about all of those other things. And just the things that went through my head were:

 #1 SHUNT!!!, yes we made it a year, but who is to say we don't need a revision after 13 months. And it does not help that his fontanel is almost closed, about dime sized. As I'm trying to find it, to feel it, when he's not screaming - because a fontanel of a screaming baby is always hard. Then we noticed that his shunt felt boggy. Really?! Really!!
Now this is mid-scream, but I'm already going through the steps in my head. Where do I have the neurosurgeon on call number, would I have to drive down to sick kids on my own. I'm supposed to be working tomorrow, could they do a head ultrasound at 3am, or would we have to wait until the morning, what about an MRI, he needs to be sedated for that. When did he last eat? Should I get dressed, I would need to pack a bag for us. Please, please, please don't be the shunt. Lets go through the symptoms, no vomiting, irritable, eyes? Open your eyes kid, let me see - nope too busy screaming. OK no sunsetting.

Lets go through the other possibilities...

#2 Constipation. We are currently in the midst of a constipation battle. Did he go today? did he go yesterday? What did it look like, how hard (sorry if TMI)? What if he's impacted, no he went today, it's getting softer, there was enough... His belly feels hard (yeah - because he's screaming!) What if it's something I missed? What if I didn't get aggressive enough with his constipation, what if I got too aggressive and it's gas?

#3 UTI (bladder infection). He drank lots today, maybe he needs to be emptied. Check, what did it look like (like I know - I cathed him practically in the dark), is it dark, smelly, painful? I don't know! Does he have a fever? No - OK probably not UTI.

Which leads up back to teething.
From 1am to 3am Nickolas was soooo upset. He wanted up, he wanted down, he wanted mommy, he wanted daddy, he wanted to be rocked, he wanted to lie down, he wanted on his belly, on his back. We gave him tylenol, we changed him, we offered milk (he never drinks at night), we let him pick whatever position he wanted to be in, we held him tight in whatever position we thought he should be in. We stayed still, we rocked, we rubbed his back, we rubbed his head, we rubbed his forehead.
At this point I have no idea what actually worked!
But it did. Oh and his shunt went back to normal and his fontanel was flat.

In the light of day I am expecting some little slivers of worry to show their ugly face in Nick's swollen gums any day now. In the meantime, I am very glad I'm working tonight! (Poor Kyle)

A potential other cause for the late night worries:

Notice the 2 layers of food - spaghetti and meatballs topped with chocolate cake and icing! Yummy during the day, maybe not so much from 1-3am!

How far we've come...

Our year in review.

1 year ago, at the beginning of 2010 I removed the last of Nickolas' back dressing and let him lay in his back. That was how long ago we were. We were still learning how to do everything. We had not met anyone else with spina bifida and were just waiting for everything. Nick had already had 2 surgeries and 2 hospital stays, we had no idea when the next would be (there is always a next one) and we had barely been home longer than we had been in the hospital.

I won't go through the year, I am sure I would miss so so much. There is a reason I keep a blog and a journal - so I can write everything down and not have to remember everything, especially in order!

It is hard to imagine that one year ago we still had not had our first spina bifida clinic, we were just beginning to learn. I was just at the beginning of my maternity leave and not even thinking about what to do when it was done. I was still working on my masters research project (that seems so far away). Katheryn was just learning about her baby brother (her Nii) and we were still cautious about her being too rough with him. Little did we know how much he could take.

Looking over the pictures I could almost date them by the amount of hair Nick and Katheryn have!

We went from Nickolas who didn't like toys or anything in May (at 6 months when we started weekly physio) to a child who is army crawling and in a standing frame, eating everything in sight, and has his own favorite toys and books. He is a rascal who will do lots as long as he's on his mommy, but doesn't want to do anything when he's on the floor.

We've met moms and babies and children, we've lost family and friends, we've gained family and friends and we've learned patience and the importance of making small steps as long as they are forward.

2010 is behind us, for good or for bad, and 2011 will bring us lots of new joys and challenges and miracles that I am excited to be there and witness. 2011 - we are ready!

Merry Christmas! Part 2!

Christmas morning!

The kids weren't quite sure what to think about it. Katheryn, who had already had time-outs for opening presents that were under the tree in the week before, wasn't quite sure what to make of a pile of presents in her stocking.

But they warmed up to the idea that these things were for THEM!

Katheryn liked  putting everything in her mouth - which made Nickolas laugh like mad! Nick just liked whatever he could look at that Katheryn didn't immediately claim as her own!

You probably can't tell from the photos - you can hardly tell in-person - but we have themed pj's. Katheryn and I go together (mint-green with reindeers) and Kyle and Nickolas go together - (blue-mint-green plaid). Maybe if you squint they go together?! I couldn't believe how hard it was to find something that went together and didn't cost alot of money! Next year I'll have a better plan!

After breakfast and presents we headed to my parents house for Christmas. Kyle and Katheryn (who weren't sick) were also able to visit his parents, but the rest of us will be there for back-up Christmas on New years!

 Nickolas had a long day, and passed out before dinner (he REFUSED to nap before that!)

Katheryn those the Christmas crackers with the hats and whistles and toys were the best thing EVER! She kept changing the colour of her hat.

 And once Nick got up, he got a hat too!

And because it was Christmas, we had to show off Nick's standing! Yes, that boy will let me put anything on his head! (Just long enough for a picture)

At the end of the day, what says Merry Christmas better than a reindeer underneath the tree?



Merry Christmas! Part 1

So somehow Christmas snuck up on us this year.

Not really sure how that happened.

Actually that's not true, I know exactly how that happened. Life happened. Unexpected things happened. My nice and orderly thought out plans did not happen. And time still ticked by.

But oh well, what can you do.

Except hold on and hope and pray for the best, and enjoy what you get.

In the meantime, I'm really glad we got our Christmas pictures done early. I'm glad we got everything done early, because things just stopped. So here is our family Christmas pictures - I'm still shocked that we did get some with both kids looking at the camera and showing something that could resemble a smile.

Let alone a picture where mom and dad AND kids are looking and smiling, and don't look like dorks!

Christmas did come and go, and I did have my camera, but not at the level we usually have pictures.

We celebrated a sicky Christmas. Not anything bad sicky, just normal sickness. But 3 weeks of various children and adults in the household having fevers and sniffles and coughs and aches and pains... well you get the picture.

But we were together. And family that we weren't able to see we can make up for when we are all better.

It wasn't the best Christmas ever, it wasn't the worst. I guess we will just have to keep celebrating until the next holiday season to make up for it. (Now that we have energy and are medication-free!)

More pictures to follow!