Surgery #7, Brain surgery #6

This morning Jacob worked on painting a big banner for Tyler to see when he comes home tomorrow. It took him more than an hour probably to paint all this.

What a sweet brother. He has been worried about Tyler.

My sweet friend Marla brought the most delicious dinner. And gave me a big tight hug just like Mom Freeman gives. We are getting taken care of really well by sweet friends in our ward.

After dinner we packed up and headed to the hospital to see Tyler. I was dying to see him all day, especially this afternoon when he was crying and in pain and sad. This afternoon has been a hard one for me for that reason. Jacob took off running when he saw Tyler and Brian come through the doors (they wouldn't let kids on the pediatrics floor, but they were so nice to let Tyler come and see us in the waiting room for a little while). Seeing him tonight broke my heart. His face and arms and legs were so swollen. He was in some pain--though he would never admit it. As soon as he saw me he cried. Still wanted Daddy to stay the night with him--he is a Daddy's boy--but he was so happy to see his Mommy. And I was so very happy to see him!

Walking around in his cute little hospital gown--that would not stay on his hips no matter how many times we rolled them down and sinched them up.

A sidenote--a few weeks ago during his anesthesiology rotation, Brian got to see a shunt replacement surgery (the same surgery as Tyler's) from start to finish. It was on an adult, but the process is basically the same. Really interesting to hear in more detail how they do it all.

Tyler with his feeding tubing, IV, heart leads and O2 sat monitor. Is that not the cutest little boy. He told me when I talked to him just before surgery, "I am being very brave!" And he is and always has been. Didn't even cry when they put in his IV (though that is not typical for him)--the nurse did an excellent job. Plus I think he tries to be tougher with his Dad than when he's with me, which is so so cute.

We loved hanging out as a family, even if it was in a room in the hospital. We'll take what we can get. Can't wait to have Tyler home with us hopefully tomorrow!

The incision site. Looks much better than last time. Tyler's regular neurosurgeon did the operation this time. We really like him, he does a great job and takes good care of Tyler.

Jacob came home and drew some more hearts to add to his poster.

And at Aldi's Jacob picked out two treats for Tyler. Wrapped them himself and put them under the table.

Shunt not working...again!

So Tyler had a shunt revision a week an a half ago (Oct 29). The swelling still wasn't gone when I took him to his follow up appt. with neurosurgery yesterday. But the swelling has been slowly decreasing. We weren't completely confidant that the valve was working properly, but hoping for the best. Well this morning his shunt looked like this:
Not quite as swollen as when we took him in on the 29th, but headed that way quickly. Took him back in (along with Jacob, who had woken up puking and had continued throwing up all morning, and Blake, who got 4 shots this morning) and they wanted to admit him on the spot. They were nice enough to let us go home and make arrangements for someone to watch Jacob and Blake and pack up before getting back to the hospital around 4:30/5:00 tonight. Brian (who was also nauseas all day) ended up being able to come home early from work (they had enough other residents on his ED shift to cover him), so he took Tyler in while I stayed home with my sick little Jacob and Blake.

Above you can see the swelling all around his valve (the largest section), and down around the tubing that goes just under the skin in his neck.

Darn it...headed for surgery again tomorrow.

One brave little boy. He always has a smile for you, even when he's not feeling so great or when he's scared.

For documenting's sake

Tyler's scar from his shunt surgery 10/29/10. The swollen part is where his valve is that controls how much brain fluid (CSF) drains out. We're still not sure it's draining right, because it's still pretty swollen around the valve. Hopefully it's not leaking out around the valve. Crossing our fingers...

Tyler's scar from surgery. I think this one is his ugliest yet.

Shunt malfunction and surgery

This morning on Brian's way out the door he noticed Tyler's neck was swollen alongside his shunt tubing going down inside his neck. One good look at it and we both got that sunken feeling--we knew that Tyler needed to go to the hospital very soon and that most likely by the end of the day he would need to have brain surgery to replace or clean out his valve (which keeps the CSF--ie brain fluid--draining correctly). Brian was supposed to be working in Cleveland Clinic's ED (he's on his emergency medicine rotation this month). Luckily, they were able to give him the day off. So he spent the day with Tyler and I in Metro's ED instead. Jamie was so sweet to take the other 2 boys all afternoon--a lifesaver! We got to Metro at about 11:45

A picture of the swelling:

Tyler spent most of the day watching videos in between CT scan, xray, getting an IV started, and Dr. exams.

One tough kid. Always says he's doing "good" no matter how scared or sick or sad or tired he is. Always can get a smile out of this little boy. Heavenly Father definitely gave him the determined and brave spirit that he would need to endure (and endure well) the trials he would be given in this life. We are so thankful for our sweet Tyler.

Brian left the ED around 5, picked up the boys from Jamie's (who fed him dinner as well!) and got them ready and went to the ward Halloween party, which Jacob and Tyler have been looking forward to for a long time now.

So by 8:00pm they wheeled Tyler off for surgery. He had the best pre-op nurse. He sang to Tyler and really warmed Tyler up to him, enough that Tyler didn't cry much at all during the few short minutes that he was away from us and awake (before they knocked him out). The surgery started at about 8:30, got done at 9:30/9:45. In the middle of surgery, Brian and I switched out. He brought the boys into the surgery waiting area, where I was. Here's a picture of them coming in the door:

It was so cute to have them in their costumes. Jacob had collected an extra bag of candy for Tyler--such a sweet brother--and had brought it with him to give to Tyler when he woke up from surgery.

Brian brought me a cupcake:

I was starving by then--hadn't eaten anything significant other than an apple since breakfast--didn't want to eat around Tyler, who was NPO (couldn't eat anything before his surgery).

And...the surgery went well!! This makes 6 surgeries total (1 GI surgery, 5 brain surgeries). More to come, but hopefully not for a long while!

1 Endoscopic Third Ventriculostomy (at 3 weeks old)--didn't work

1 VP Shunt placement surgery (at 3 months old)

1 GI surgery (to place Tyler's feeding tube/G-tube)

1 VP shunt revision surgery at 16 months

1 more VP shunt revision surgery two weeks later (16 months old)

and 1 more VP shunt revision surgery today (3 1/2 years old)

He is a trooper, and we are so thankful the surgery went well. Such a relief. I really felt at peace all day today, I know because of the prayers offered in ours and Tyler's behalf.