Where to Begin?

For me, lack of sleep is directly correlated to my ability to view a bad day as a good one. I’m tired, therefore today kind of sucked.

The good news is that we are home. We were given our walking papers and so managed to escape the hospital’s clutches at around 3:00. We have been discharged many, many times before, so I knew that there was no way we were leaving before noon, so I mentally set my acceptable departure deadline to 3:00, and managed to achieve that goal.

Things were looking pretty good this morning. Gav woke up quite cheery after a 12-hour sleep, completely unfazed by the blood-curdling shrieks coming from our neighbour across the hall at intervals all night. I, on the other hand, had a harder time ignoring them. Of course, my heart goes out to him for whatever pain he was suffering, but it was so hard to deal with this additional disturbing noise in an environment of beeping IV pumps, an archaic overhead paging system, and extremely rattly carts rolling up and down the halls. Bean woke up at 6:30, which was great as I was actually awake when the doctors arrived for rounds. They were pretty happy with him, but couldn’t offer any other advice for Gavin’s situation apart from, “It will take a couple of days to resolve.”

I thought that maybe Gav was making strides, as he agreed to sit up in bed this morning after spending all day yesterday flat on his back. After he had eaten his breakfast, I convinced him to get in his stroller to go the playroom and check out the toys. He was happy to do this, but had waves where he clutched his head and sat back, clearly in pain. Finally, he said he wasn’t feeling well and so I took him back to lie down. Too late, though, as he promptly threw up his entire breakfast.

The rest of the day wasn’t much better. Even more disturbing than the positional nausea is Gav’s behaviour. He is just not himself. It is hard to describe, but he seems much more vague and unfocused than usual. He is having trouble remembering things he’s known his whole life, and keeps referencing things that happened a long time ago as if they happened yesterday. He is also incredibly irritable, and responds with shrieks if even remotely thwarted in any way. At other times, he is very silly, and will babble nonsense words for minutes on end. This is all very hard for me to handle for a couple of reasons. I am struggling to communicate with him as he seems to be not listening most of the time and will not answer straight questions put to him. I am also fearful that this will continue indefinitely, and my bright and observant boy will not come back to me at all. I have been told that this is temporary and that things will soon settle down, but I can’t help but feel terrified that some unknown and permanent damage has been done.

It is even harder to accept these changes, because he felt fine and was doing so well before the surgery. However, we know that the problem needed to be addressed, sooner rather than later, and now, thankfully, his brain is back in his skull where it should be. Perhaps things are just adjusting in there after being squeezed for so many months. Unfortunately, the possibility exists that his shunt is now draining him too quickly, and that he requires a lower flow shunt. The only way to find this out is to wait and see. If he doesn’t feel better in some weeks, then we may be returning to the OR sooner than expected.

For now, we are stuck at home with a toddler who can’t move. This has undone a good many things. Our patient efforts at toilet-training are now completely foiled, and his food consumption over the last few days has been patchy. I’m not quite sure how we will keep him entertained over the next little while, thoughts?

Gavin has finally, at 8:30, gone to sleep after putting up a horrendous fight with dear Daddy. Exuding heart-felt prayers for just a slightly better day tomorrow.

7 responses to “Where to Begin?”

  1. lisa

    I am so happy to hear that the surgery went well. I can’t imagine how scary it is for you to be getting these odd responses from him but be patient. I’m sure you’ll see your sweet baby back to his normal charming self before long. I’m sure between the drugs, lack of food and lack of sleep, he’s delirous. I remember being post surgery and puking for days! And whining a lot for that matter, and I was an adult! I don’t know where you find all the energy and patience but you are an amazing mother! You are all in my thoughts and prayers.

  2. Aunt Karen

    Erica.. have patience..Gavin is such an amazing little boy. Don’t let negative thoughts creep in. I predict you will see things back to normal within a week or two. Give it time and don’t worry unless you have to. Love you. You are fantastic parents!

    Aunt Karen

  3. pauline

    Dear Erica – I don’t have anything to offer to ease your distress, my heart goes out to you and Craig, you are both so tired.

    I just wrote so much to you, and then erased it all – It wouldn’t have helped at all – by now you two have figured out your best coping skills. Thinking positively Erica – Of course this personality change in the little trooper is only temporary,while he adjusts and gets his new inner balance.

    Sending positive thoughts and so much love and constant prayers. xoxo

  4. Amanda

    Dear Erica,

    Sending you lots of love and know that tomorrow is going to bring renewed hope and strength. Gavin never ceases to amaze all of us and I know that he will be back to feeling like himself soon. I hope that all of you get good rest tonight.
    We are thinking of you and sending you all our love
    Amanda, Drew and Leo xo

  5. sarah

    Thinking about you guys. Thoughts on activities- do you think gav would enjoy a little in house entertainment? I know a few childrens musicians and some (unscary) clowns and even know of a puppeteer. I could organize, just let me know. And what about making star galaxies on the ceiling or arts and crafts in bed?

  6. Auntie Melanie

    Erica, continue to believe in your son as I know you always do…I believe that this is a temporary set back as the doctors have said, and I will continue to pray for Gavin as I always have. I hope things get better soon and I love you, Craig and Gavin so much.


  7. Anonymous

    oh Erica, big hugs to you all…how hard this must be after some relative calm and hope that things had returned to “normal” to be back in uncertain territory…hang in friend, Gav has proved time & time again that he is strong an will rebound with “remarkable” imporvement & wonderous health!

    Keeping you all in our thoughts ~ love & light,


Leave a Reply