surgery number seven

“Everything in life is luck.” ~Donald Trump

Luck. Something that seems to always work against me & my family. As luck might have it…I find myself posting another update from the hospital as my baby boy has went through yet another surgery. Surgery number seven. Seven is thought to be a lucky number…for everyone except me. Knowing Chance was going to undergo a seventh surgery definitely left his superstitious Momma a little concerned.

Our first day home after his sixth surgery went well but by Saturday Chance began to let us know he wasn’t doing as well. He got sick in the morning, became more cranky throughout the day, his soft spot became “full” again, and by late afternoon he began to projectile vomit again. Yes, it all were indicators that something was going on again with his shunt. We called his neurosurgeon and she agreed we should take another trip to the E.R. Here he was an hour or two before we headed to the hospital when he was quite cranky. When he won’t settle when being held it’s obvious that something is wrong. I kept trying to tell myself not to overreact…but we’ve learned that a concern with his shunt is nothing to wait around and wait for it to “get better”.

Once we arrived at the ER Chance continued to be irritable and continued to let us know something was wrong. As I held him he fussed on and off the entire time we waited. The baby boy we’ve come to know the last few months typically loves to cuddle and rarely fusses unless something is wrong. This photo was taken shortly after his shunt was “tapped” to check the flow of fluid in his head.

If you want to see the difference in my baby boy once the fluid in his head is drained, this photo should help you see the difference. When they tapped his shunt they were able to drain fluid fairly easily. They removed about 8cc’s and for the next half hour he became a bit more happy and alert. However, within a half hour his soft spot filled right back up and he became fussy again. Due to all the symptoms we were already bracing ourselves for another surgery.

To help determine the full extent of what might have been going on Chance underwent an ultrasound of his abdomen to check on the tubing of his shunt. There were concerns that perhaps there might have been a blockage on the distill end of the shunt in the area where the fluid was being drained to his belly. The ultrasound was a breeze for my baby boy…he did great. Unfortunately, the results didn’t confirm any problems which only made it that much more challenging for his neurosurgeon to pinpoint any problems.

We knew going in with the symptoms he was experiencing that it was likely he’d have to undergo another surgery. I don’t know if anything can truly prepare you for the moment you have to let go and allow them to take your baby into surgery. With this surgery coming so close to the last one I felt more worried with how he’d do. My baby boy seemed weaker than the norm. I took this last photo before they took him away…a photo I looked back at many times in the hours we waited while he was in surgery.

We waited. And waited. And waited. Minutes became hours and before we knew it hours had passed. He was in the OR for around 3 hours. The first hour alone was spent trying to put in an IV. They resorted to an IV in the head because all the tests earlier this week and his previous surgery left them with no options on where to stick him with an IV. After his surgery the neurosurgeon came out and informed us that his shunt was clogged again. His entire shunt, including the tubing was replaced. Once again he has a programmable shunt like he had the very first time around. We weren’t able to see him until more than four hours later. He was a bit more challenged recovering this time around and experienced a bit of stridor (challenges breathing). Despite this, he still did quite well bouncing back and I was so relieved to finally see him again.

Once he was finally admitted into his own room he dozed off. Poor little guy was so beat.

I’ve learned that shunts are known to be finicky devices, but for my baby boy it’s not an option. He has to have one due to his spina bifida & hydrocephalus so this sucker needs to work properly. It’s been suggested that we should consider naming this bad boy…I suppose with the thoughts that if we create a connection with it that perhaps it’ll decide to work. I’m sure that sounds superstitious…but at this point I’ll do whatever it takes to make this one work for a long time.

Chance just underwent a CT scan early this morning to check out his head. I’m sure at some point today we’ll find out what’s next. It’s my understanding that if he continues to do well and tolerates feedings and recovery well that we may go home before the end of today. Because he’s had two surgeries he’s at more of a risk for infection and they don’t want to prolong our stay any longer than needed, knowing that he’ll receive great care from home too. So we wait…and pray. Thank you all for your kind words and sweet thoughts…somehow we’ll get through all of this.

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July 31, 2011 - 12:11 pm

Betsy - Amanda – just wanted you to know I’m praying for your little boy & you.

July 31, 2011 - 3:50 pm

Lora - I can only imagine how heartbreaking this has been for you. Chance is very lucky to have you as him mom and a family that loves him more than anything. Please know that we continue to pray for you guys.

July 31, 2011 - 4:07 pm

Randi Williams - Our Patricia has had only one shunt malfunction in her first 15 months, so I don’t know what you are going through, but my thoughts are with you. It sounds like you have a lot of people around you for support, but if you need to get in touch with another mom of a child with Spina Bifida, I am here.

July 31, 2011 - 4:37 pm

Lisa - Whatever you need, let us know.

August 1, 2011 - 9:36 pm

Elizabeth - What state are ya’ll from? I have SB and hydrocephales. My prayers are going up for you and your family. Stay strong God always has a plan! Jeremiah 29:11.

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