Hitting the Wall

Sorry, I didn't post yesterday.  When I went to last night I had no network connection...

In the morning they felt that her head was still too firm.  Early that morning Lauren had thrown up again.  Which is a huge sign that there is too much pressure in her little head.  It was obvious to me-The shunt is not working!

Neuro came by around noon and confirmed my thoughts.  After an MRI it indicated that the part in the head/brain area was good.  Therefor it had to be the tip of the catheter.  Two possibilities: 1) There are blood clots at the tip, which is sometimes common in surgery.  To fix this they would tap her shunt to relieve the pressure, then inject TPA, a blood thinner, to help break up the clots.  2) The tip of catheter is not exactly placed, which would require surgery to adjust.

They went with trying to inject TPA and pulling fluid first to see if this would help.  Lauren felt much better after they relieved that pressure.  But, later that night the pressure had built up again.  From midnight for a few hours all Lauren did was cry and get sick.  It was such a mess and heartbreaking to see her like that.  The neuro surgeon on duty came immediately and repeated the TPA, and tap procedure.  Which did feel better on her head, but she still continued to get sick until 3:30 am.

All morning she was very moody.  Was not getting sick but would scream and was hard to console.  Around noon I realized that her shunt site was very swollen, all concentrated to that side of her head.  Her ear was sticking way out, her neck, where the catheter was routed, was black and blue and her right side of chest, where catheter is, was swollen.  I wanted neuro now!! 

When he had gotten here, I had had it.  I was at my breaking point-HIT THE WALL!  He was just going to tap the shunt, inject TPA, and let it be.  I began to nicely, but very firmly in between hysterical crying demand that she get fixed now.  More x-rays... something to determine surgical route... We were not going to wait 36 more hours with her like this till Monday-like they wanted.  (They wanted to wait till Monday because Dr. Tulipan was off, and they want to preserve the original surgical team, making it the same).

Even though I was sobbing, he took me very seriously.  Said he would call the pediatric surgical team (they are the ones that insert the catheter-this is the part that would need to be revised) right away.  They did relieve her pressure and it made her feel tons better.  Swaddled her up and she was able to sleep for a few hours.  Unfortunately, when she woke up she was hysterical again.  Every time you barely move her...  Her right side of face, ears, head, chest, and neck are so swollen.  My poor poor baby.  Ummm, Neuro!!!

They ordered a STAT shunt series x-rays and another MRI.  Right when we were done with MRI, she threw up again.  But we swaddled her up and she slept a little bit.

Then she woke up about thirty minutes later and threw up again and turned ghostly pale.  Suddenly she has a bunch of nurses checking her out.  Her vital signs are all checking out...  Neuro surg is currently in the room (while I had to step out) and are tapping shunt again and giving her more TPA.  He did mention that the MRI and x-rays indicated that the shunt in the head is working correctly and their is a lot of fluid and swelling.  The catheter needs to be re-adjusted.  For whatever reason it just is not working. 

My heart is just being torn apart.  This is one of the worst moments through her hospital journey.  She is just so pitiful.  I ache for my little girl.  I am confident that she will pull through this with her incredible strength and she will be smiling again.

It looks like she will go into surgery tomorrow morning.

I'll let you know more later...

Below are some pics.  You will see the swelling.  It's hard to capture in the pictures and I took these earlier before it was more swollen.  

you can kind of see how her neck is black and blue.  It's dark purple now.

Do you see how her ear is so swollen it's sticking out?  Cheeks and neck are too and all behind era around shunt.