Not to be Outdone

Lodged in Charlie’s head is a very basic, but very necessary piece of engineering equipment: a pressure valve. After an extreme brain bleed on his second day of life, he developed scar tissue that prevented the fluid in his head from draining properly. The condition that resulted, hydrocephalus, used to be fatal, but these days is easily treated with a valve.

I almost never talk about the valve in Charlie’s head and to be honest, I only worry about it when he becomes horrible cranky and I have trouble detecting the reason. Charlie was shunted at four months of age and we were told that he would out-grow the small size valve at around age two. Well, he’ll be four next week and we’re still using that same one.

baby in a hospital gown, sucking his thumb

Right before his first shunt surgery

You can see where I’m going with this, right?

At his last CT Scan, which was in January, it’s unclear whether the shunt is even in the ventricle any more–the doctor thinks it’s not. At this point he isn’t having any dramatic effects as a result. It is possible, however, that his ventricles are slowly enlarging and that at some point it’ll bite us in the butt with reduced vision, extreme irritability, headaches, seizures and other fun side effects.

The doc recommends doing a CT in about a month and if the ventricles are enlarged, going ahead with a shunt revision before things get really bad. There is a tiny possibility that Charlie has outgrown the need for a shunt and his ventricles will be fine. In that case, we do nothing. Wouldn’t that be awesome?

baby with a bandage on his head

Recovering from shunt surgery

I agreed to the plan, but sometime in the afternoon I started actually thinking about it.

Surgery in July would mean me at home with two newborns and my son in the hospital–probably with his Dad. There are about a thousand things that are wrong with that scenario, but the big one is: my baby, in a hospital, without his mommy. I’m sorry, but it can’t go down that way. I am a lot of things, but I’m not near strong enough to let my child recover from brain surgery without me.

So tomorrow I will call the neurosurgeon and see if we can get on the CT schedule ASAP. If surgery needs to be done, we’ll aim for some time in the next three weeks. I cannot put into words how much this hurts me. It hurts me to think about bumping up surgery. It hurts to imagine that I have to calmly schedule this like it’s a tooth cleaning. This is a big deal and it deserves my full attention.

I feel like I’ve asked for a million prayers since Charlie was born, but I’m asking for a million and one. First, go ahead and pray that he doesn’t need the shunt any more–that would be a real miracle. Second, if he does end up needing surgery, please pray that it goes smoothly and that I am able to be there with him.

I love being Charlie’s mom, but I really could skip decisions like these.

baby with bandage on head smiling

On the road to recovery--happy to get rid of that headache!

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Comments

  1. alexandra says:

    what a hard situation to be in especially right now… thoughts and prayers for your whole family from mine.

    • Thank you, Alexandra. I am sure we will figure it out–I just thought I had things mostly settled and now this thrown into the mix. I hope your little one is doing well these days.

  2. Oh Sister, many prayers to you! This had to be a tough situation. But all will be fine. I know my God can easily do things like this. :)
    Love the pictures of Charlie.

    • God has done so much for my family–I feel horrible for asking for more. But I will. And if this isn’t his will, then I’ll figure out how to deal with that too.

  3. My prayers are yours.

  4. Prayers are coming from me too!

  5. Oh, this made me cry a little… it hurt my mom-heart to even think of being in the hospital, helping a child recover from any kind of surgery, much less NOT being able to help. You are absolutely right to try to bump it up if it does indeed need done, I think. But I am so sorry that you all even have to deal with this at all. Praying that the CT shows the best possible news, that nothing is needed anymore.

    • You know, Sarah, it would be wonderful if we could just skip surgery all together–I’m hoping for that too. I guess that once you have more than one child, you sometimes have to make tough decisions like this one. They probably don’t all involve brain surgery, but I bet they’re never really easy either.

  6. I would do the same thing Katy, as I would need to be in the hospital too. I’ll be praying that there will be no need. Sending prayers your way…

  7. I pray for you and the twinnies all the time so I’ll just add in a prayer for Charlie!

  8. Sending prayers and hugs! I don’t know how you do it momma! If you need anything just holler from across the lake :)

    • Thank you, Cara. If we do end up in surgery, we’ll be on your side of the lake, so I won’t have to yell nearly so loud.

  9. PinkieBling says:

    Poor, sweet, BEAUTIFUL little guy! My prayers are with you.

    • You know, I think he’ll handle the whole thing WAY better than I’m handling things. The kid’s a trooper–I cold take a few cues from him.

  10. I’ll pray five ways to Tuesday if it helps. I always like to add the “Whatever is best.” prayer for good measure, as I’ve learned that what I want is not always what we need. I’m also thinking of adding a “Really now, come on” prayer because you could use a break. Twins. Lordy.

    • Megan–that is a favorite prayer of mine too although I don’t think I word it quite as nicely as you do. I believe in God’s bigger plan, I just sometimes have trouble letting go of the idea that I have control over these things.

  11. Julia O'C says:

    I’m happy that, at the very least, he’s not symptomatic. That’s a very, very good sign. My little guy has a shunt for a large arachnoid cyst on his brain. His was placed when he was 2 days old but we were never told that he would outgrow it – only that “one day” it would just stop working and need to be replaced. I worry every time he’s sick that that day has come. So in a way, I **kind of** know how you feel (I say kind of because I don’t have the added pressure of two more babies on the way!).

    I will keep your son in my prayers.

    -Julia

    • Well, I guess the good thing is that I’m not surprised that he needs the revision–just stressed about the timing. I’m glad he’s not symptomatic as well–could mean very good things, or could give us a little more time to make a decision.

  12. One of my 3 year old twins has a vp shunt due to a IV degree brain bleed. He had a reservoir put in at one month, and the shunt at 3 months. We had a scare with seizures 2 months ago where we thought it might be shunt related, it wasn’t. But he had a CT scan at that time and it showed it’s no longer in the ventricles, but they aren’t enlarged so it’s either still working thru the scarring that formed around it, or he doesn’t need it anymore. We had the option of having it revised now, or keep watching the ventricles for growth. We chose to wait, and the neurosurgeon agreed that it would be riskier to revise now.

    So prayers for your family that all turns out in your favor.

    • Thank you, Elida. I would very much love it if we could put things off for a while longer. That would be nice. I guess all we can do it wait and see what the tests say.

  13. PRaying he doesn’t need the shunt surgery. Thanks for sharing his beautiful baby pictures. He looks like such a sweetie!

    • I like looking at those old pictures too–he was SUCH a happy baby. He’s a sweet kid now, but nothing compares to a giggly, smiling babe, right?

  14. Praying that Charlie doesn’t need the shunt anymore. ((Hugs))

  15. I keep forgetting that it’s already June. I will pray for Charlie; hopefully he won’t need the surgery at all.

  16. It breaks my own heart imagining you not being able to be there for Charlie! I am definitely adding Charlie to our prayers for some serious miracles. Such gorgeous photos of him as a little bub! Thinking of you guys.

    • Thank you, Kara. I love the pictures of baby Charlie too. I am still swallowing the idea of not being in the hospital with him–I’m starting to develop a plan at this point, which is better just freaking out.

  17. I have my all fingers and toes crossed that he won’t need the shunt anymore!

    • Thank you, Jenny. I would be so nice if we didn’t need it any more! If I can’t have that, then I’ll just have to work on figuring out how to be there in the hospital.

  18. Katy, my heart and prayers go out to you. Hopefully the shunt is no longer needed.

    • Thank you, Glenda. That would certainly be a wonderful blessing. If that’s not the case, though then I will just have to figure something out–we will make this work!

  19. I completely understand. I ain’t that strong either. Sorry you’re all having to deal with this right now.

    • Thanks. We’ll figure it out–I’m still trying to figure out all the details, but we’ll get it done.

  20. I will definitely be praying!!! I can’t imagine trying to make a decision like this, much less scheduling it around my childbirth & all! You are a strong woman, and I know God will provide all that you need!!

  21. It always bugs me when the one thing someone needs the most from me is the one thing I am the least capable of giving. I detest that about myself. Has it gotten THAT bad that I won’t even pick up the Bat-Phone and even try anymore? Man…how do you repair a relationship that has spiraled down the bowl like this?

    I want to, I really, really want to…and I’m telling you that only because I hope it counts for something, and if ‘wishes’ and ‘thoughts’ and ‘hopes’ count…you have those by the truckload in this house.

    As for the other? I have such a long, long way to go.

    • Ken: rest assured that we also take good thoughts, happy vibes, etc. I’m not picky when it comes to people putting goodness out into the Universe for my boy. I’m a prayer girl, but I know not everyone is.

  22. Kristen says:

    You’re in my prayers.

  23. I can’t even imagine how you do any of these things. You have all my prayers and then some.

  24. Fleurty Whitney says:

    Prayers and thoughts sent your way Katy – bring Charlie by one day or something, would love to meet the little man!!! Keep us updated!!

    Whitney

  25. Are we leading parallel lives??? Two pregnant mommas, due at the same time, faced with surgery for their first born? I feel like I’m ready my own blog. Granted, we were not faced with brain surgery but surgery, nonetheless. We are two days post op here and although Oia didn’t have an overnight stay in the hospital, we have a summer FULL of intense therapy as our road to recovery. The decision to take care of our first “baby” while the second was still cookin’ has been the best decision we’ve made. Not sure how settled things will be come birth day but I’m certain the worst will be behind us by then. Anyhow, just praying for you and Hubs and Charlie. I know just what this feels like….

    • Well, the good thing about brain surgery (not how I ever thought I’d start a sentence), is that the recovery is pretty easy. No muscles to cut through and in this case, the path is already created, so it really is just replacing hardware. Still, nerve-wracking.

      I’ve also got the added stress of having to convince our doc to move things up–so far all I’ve been able to do is leave a message. Gah!

  26. Praying for all you asked for. You are one strong Momma Katy. Hang in there, friend. xo

  27. I will be praying right along with you and to date God has only not given me what I wanted one time and even that turned out to be a blessing in disguise – I asked God if he could make me walk and he said no and now He is working through me and showing the world that anyone can make a difference :)

    • Well, Nisha, I thank you very much. I believe very much that God’s plan is wiser than ours–it’s just sometime hard to let go and give him the control.

  28. I will be praying for Charlie and you.

  29. Decisions like this just stink! Really, there is no other way to say it.

    I will pray that all goes well with the CT and surgery is not needed. No surgery sounds like a pretty good plan to me – just not sure if God agrees. If He has surgery in mind for Charlie, I will pray for you and your husband to work out the details and for peace during the process. And for a smooth, speedy recovery for Charlie too.

    Thanks for sharing those photos. He is so so so cute. He is such a cute kid, that I should have expected him to be an adorable baby, but man oh man – I could eat him with a spoon!

  30. A million and one on it’s way…not just for Charlie, but your whole family. What a beautiful child! Here’s hoping and praying it goes easily & smoothly.