Home!

We got the 'GO' to be discharged home! So then Kyle and Katheryn came to pick us up! Katheryn hadn't visited at all and was asking about us all the time!

I stayed the whole stay and I didn't want Katheryn to come to the hospital and have to leave without us. Also we were in the observation room until the last couple of hours of our stay - so we had a little corner with the crib, a table and an oversized chair. And so did the other 3 kids in the room. It was for kids who needed that extra level of care, so there were always 2 nurses in the room too.

I think that Nickolas missed her too!

There were lots of kisses and hugs (Nick wasn't THAT excited) but she got him laughing - something we hadn't heard for a couple of days!

She's telling him about everything  he's missed at home!

And trying to make him laugh!

We got our discharge papers, packed the car (how did we collect so many bags in just a couple of days) and were on our way home!
One question they kept asking - is he back to his normal self? Well... not really, and that is the question that drove me crazy, I did want to go home, but he was more tired than normal, more cranky than normal. But he finally had something to eat (and kept it down). He was only 36 hours after anesthetic, and had just had BRAIN SURGERY!!! Who wouldn't be cranky and tired after that. Oh yeah and 72 hours in the hospital being woken up every couple of hours, poken and prodded.
How is he supposed to be back to his normal stuff! What if I say yes, and we get home and need to come back? But they seemed to be satisfied with my answers and what they saw.

After an ok night (Nick threw up his milk once we got home and didn't eat much for dinner). Oh oh, is this a symptom, is this an upset stomach, do we call, do we wait?! I think milk was just a little heavy for him.

Nick was more bright-eyed and ate breakfast and his milk. Still very, very cuddly but his old stuff was starting to emerge. And I got a couple of posts off to ask opinions of other moms.

It's so hard when I'm the one who is supposed to know everything. And to watch out for symptoms that may or may not be there, may have an alternate explanation or be the thing you are supposed to be looking for. AND from our experience the symptoms for the revision and the UTI were not the ones that I was originally told to look for!

I was very happy when Nick wanted to start playing. Yup there is my boy!

After surgery

Here is Nick in the recovery room. I am sure the nurses thought I was crazy when I pulled out my camera (I know Kyle does). But it took a while for him to wake up. At first he would open his eyes a bit of a flutter when I called his name. But he was just really out of it.

We were in the recovery for over 2 hours, letting him sleep, watching him sleep, touching him, praying for him, thankful for him.

Something that really gave me a kick and made me laugh... Pink highlights! Yeah Nick got his first dye job! Looks like something I tried to do when I was 15!

The next morning Nick was allowed to have something to drink. After trying different sippy cups (we didn't bring the ones that he liked) I decided to give him his milk in a bottle. I think this is the first bottle Nick has had (we went straight from breast to sippy cup). He thought it was great and kept moving it around in his mouth - no hands!

He wasn't really bright eyed until about 4pm Saturday afternoon. Right around the time Kyle came to visit. I gave him a cookie and he just devoured it!!! Look how bright eyed he is!

When Nick gets tired he sucks his thumb in one hand, and twiddles his hair with his other hand. Well, his hair is up in the bandage. Boy did he destroy that bandage! he kept tearing it apart. We ended up running tape around the whole thing trying to keep in intact for one more day!

We did order dinner for Nick, but he only ate 2 french fries - probably not the best mommy-idea for the first meal. But he kept what he ate down.

This is breakfast the next morning. Nick did make an effort to eat, but he really only ate about 1/2 of this hashbrown. One of his favorite  foods. Not the appetite that he usually has. I guess just time will tell. But his appetite has to be back before we can be discharged.

Katheryn did not visit (I didn't want her to) but we did bring a picture for Nickolas to look at. he liked looking and touching the picture.

We moved to another room and were able to get some more mommy cuddles in a nice quiet room. And had some sleep at the same time.

After some quiet time, some rest and some tylenol we decided to try again for a meal. Something light and something he'll like. Yogurt and PB&J.

Success! He INHALED a giant thing of yogurt - he kept chasing the spoon - a very good sign. And then just tore apart his sandwich himself!

So it was a GO FOR DISCHARGE!!!!

I got so much support for everyone on facebook, and my blog and my family and friends through blackberry (yes we are totally plugged in), and of course people we actually talked to in person. It was very nice reading comments and knowing that there were so many people thinking and praying for us. People who had been there, done that and knew how hard it is.

At such a tough time, just a couple of words really helped.

It's working!!!

Nick's shunt surgery was very successful yesterday. I am on the computer on the unit right now - so no pictures.
They were able to just fix the proximal part of the shunt (the shunt on his head) and the distal part (the part going into his belly) was fine and they didn't need to change anything. The surgeon was very happy with the results. Nickolas was in the OR for about 1 1/2 hours, but then was a little slow waking up from the anesthetic, so we didn't get back to our floor until midnight (we left a shift change - 7pm for the surgery).
Last night I was able to get a little bit of sleep, again in the chair next to the bed. We are staying in the observation room, not quite sure why, I think staffing or room issues, not Nickolas issues. The nurses are super nice, so we are fine with that.

Nickolas slept all last night - very, very soundly. A little too soundly for my taste but I think it was the last 2 days catching up to him, and the anesthetic wearing off. Today when he wasn't sleeping he was busy being grouchy.
He did get to eat a little bit in the morning, but then he had to be npo (nothing to eat/drink) in case he needed to be sedated for the CT. The cat scan that was supposed to be done around noon. Which turned into 3pm, which turned into 5pm when Nickolas would not settle and sleep. Finally they did it with him fussing and little bit, but they were able to get the shots they needed.
I swear the surgeon almost beat us to the room. To tell us the good news! The shunt is perfectly placed! Yes, he used the word perfect!

So as of this minute Nickolas is busy munching on a cookie, finished his milk and is once again showing his pearly whites off to everyone with his super-duper smiles.

Thank you for EVERYONE for their thoughts and prayers. They really mean alot to me.
I don't know how I've made it through the last couple of days, but I think that when I get home I am laying down in bed and not getting up for ANYTHING for at least a couple of days!

Hopefully tomorrow I will post some pictures so you can see Nick's smiling face for yourself!

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!