9.28.2012

Back to the OR

God sent an angel down from heaven to watch over our boys and his name is Dr. Mittler. 

Two days after A&R turned one, we wound up in the PICU with Ryan. It all started Wednesday morning when Ryan threw up before his morning bottle. He had a runny nose so I assumed it was just a virus.  He pretty much slept the entire day, and anything he ingested wound up on our floor.  By 4pm we took him to the pediatrician, who also thought it was viral, but she instructed us to go to the ER if his vomiting increased in frequency.  I brought him home, gave him some pedialyte, and he went back to sleep.  Three hours later he vomited again.  This cycle continued once more, until finally at 11pm, with some urging from Seamus, we took Ryan to the ER.

A couple of CT scans and X-rays later we were told that Ryan's shunt stopped working.  Apparently a growth spurt caused the tubing to shift, and the shunt device was no longer able to do it's job.  You know what that means...surgery.  I think this is #10 in our books.  At this point it was 3am and they were able to get him on the OR schedule for 10am. 

Dr. Mittler showed up around 9 to talk to us about what is going on.  He is Aiden & Ryan's neurosurgeon, and from the moment we heard the word Hydrocephalus, he was in the picture.  He is the sort of guy that walks into a room and instantly makes you feel at ease, even when your child is minutes away from having his head cut open and his brain being operated on.  I hope he knows what a huge weight he lifts off our shoulders every time we are faced with another surgery.  He truly was meant to do what he does, and I know for a fact that there are other parents out there who are as grateful to him as we are. 

By the time Dr. Mittler showed up, Ryan was acting much better.  He hadn't vomited in almost 12 hours, but that could've been because he was NPO in anticipation of surgery.  NPO means he was hooked up to an IV for nutrition, and wasn't allowed to take anything by mouth.  In addition to feeling better, Ryan was showing some other signs that his shunt may have started working again.  So in lieu of going straight to the operating table, Dr. Mittler suggested an MRI to take a look at his shunt once more.  This gave us a glimmer of hope that we would get away with no surgery, but the waiting resumed.  After another hour or so, Dr. Mittler told us that it appears that the shunt may have started working a little better, but that he still suggests surgery in order to make sure that it works perfectly so that we don't wind up back in the ER in another 24 hours.  When that man speaks, you listen.  So there we were again, warming up to the idea of yet another brain surgery. 

Ryan was wheeled in to the OR at around 11:30am.  It was a little more difficult this time.  He's older and more aware of what's going on around him.  The whole time we were waiting on our game plan, I kept saying how big he looks in the hospital bed.  But once I was told I had to leave his side, he became so tiny to me.  We told him we loved him and said a quick prayer, and that was it.  They took him.  I immediately thought of how unfair it was for him to have to be so brave at such a young age.

We went to the surgical waiting area and wound up falling asleep.  We were so exhausted, not having slept in over 24 hours.  An hour later, Dr. Mittler found us and after waking us he said that the surgery went well.  He swapped out the shunt tubing, tested the device, and sewed our little boy back up.  We would be able to see him in recovery, once he was settled.  About 30 minutes later, the nurse got us and took us to Ryan.  He was cranky and his voice was raspy from the breathing tube they inserted.  I held him and gave him some sugar water, which he happily sucked down.  He fell asleep and we were once again at peace.  Back to that place where we know that our child is comfortable and safe.  Back to normal.

Though we live with a condition that threatens our children each day, we have pretty normal lives.  We go to work, come home, spend time with our kids, and do it all over again every day.  It's when a sickness rears its ugly head that we are reminded of our situation.  When our kid starts vomiting, it could very well be just a virus.  But it's heavy load to bear knowing that it's your responsibility to make a judgment call every time.  To decide if it warrants a visit to the ER or not.  You don't want to be that crazy parent that takes their kid to the hospital for no reason.  But you also don't want to be that parent who didn't.

Last night Seamus took over at the hospital and sent me home to get some rest.  When he walked me out, we both expressed that we better get used to this, because this is our new normal.  It's a little scary, and downright tiring at times, but this is our life.  And we have each other to get through it. 


Ryan is still in the PICU being observed post-op.  He started eating again and is pretty much back to his normal self.  The doctors expressed that they will decide later on whether or not he can go home.  At this point there's no reason to keep him there, so I'm not really sure why they're stalling.  Hopefully we can welcome our son home today.  Thank you to everyone who sent well wishes and prayed for our son's successful surgery.  It is by the power of prayer and faith that we've been blessed with such a good outcome yet again.  We are reminded of this daily. 

3 comments:

  1. I have been following your blog for the last couple of months- I found it on the Hydrocephalus website. My grandson Oliver was born January 19, 2012 and was diagnosed with Hydrocephalus at 3 months and had his VP Shunt placed on May 9th. This is our first experience with Hydrocephalus and I must say your blog has helped me- reading about your experiences with not one but two children and all that you have gone through. I hope your son Ryan is recovering well from his recent surgery- what you have experienced this week is the biggest fear I have right now as Oliver is getting so big and growing so fast. I watch him 2 days a week and his other grandma watches him the other 3 days, and although we are watchful and aware of what to look for with a shunt failure, I am terrified. I know that future surgeries are inevitable at some point, I just don't like to think of it. You are very strong and loving and kind- thank you for sharing your story. It does make a difference, and helps ease the fear a little for a stranger far away.

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  3. You're welcome- and thank you for your prayers for our Ollie. He goes Monday for his next MRI to make sure all is well. He is an active, happy baby right now and I just want him to stay that way :). Your sons' birthday party sure looks like a happy day- may you have many more ahead.

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