A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Thursday, January 6, 2011

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!



  1. What a trooper!!! Both you and him! Ugh, I can't believe you guys are going through this. I can't tell you how much my heart sunk when I read your FB status yesterday. I'm praying and sending any good everything I can that this surgery is so smooth and you both get to sleep it off tonight.

    FWIW - when Kingsley was in for his decompression, he went 3 or 4 days without PEG and did just fine. I think it was the combination of drugs and not eating. He ended up with the newborn SB baby issues instead. Hopefully that will all work out for Nickolas as well.

    What a sweetheart. He looks so good in those pictures, it's crazy to think that he's got all that going on. :(

  2. Oh, yikes, what a MESS! Poor baby and poor you! I pray the surgery is simple and quick (Madi's shunt revision was the easiest of all of her shunt issues) and that you are home to catch up on sleep quickly!

  3. I'm so sorry friend! I'm keeping up with FB for updates but I wanted to write on here and say we are sending our prayers and "get better" wishes to little Nickolas and our strength and peace prayers to you and your husband. Jet had his original shunt placement at 6 months and it feels like yesterday. No sleep, lots of worry, and so many unknowns - but we are all okay now and I know you will be too. What a trooper for going through all this and not going crazy-baby on you. :) He's amazing!

  4. Oh I am so sorry you are all going through this! Can't wait to hear he is recovering well. Thinking of you and praying for Nick. I feel you on the poop worry, it would concern me too in spite of all else that is going on. Those nurses just don't know.