Sunday, July 31, 2011

Shunt Surgery - July 19, 2011

Emma's shunt surgery went really well. The hardest part for Shawn and I was as she was comming out of surgery, She was really disoriented still from the anesthesia. She looked so confused and when she started to cry her voice was really hoarse from the breathing tube that had made her throat raw. Hardly any sound came out at all and it was heart wrenching. She had a brief allergic reaction to either the Betadine or Lortab, but the recovery went well otherwise. I was able to stay in her room overnight and we were home by 12:30 the next afternoon. The only pain medication she had been on was Tylenol and she was doing great... Until about an hour after we got home. Then the crying (screaming) began. We finally were able to get her some Percocet at 11:00pm and she was finally able to get some rest. The surgery involved two incisions on her head and one on her tummy (the fluid drains down a tube into her abdomen where it is absorbed). She will need the shunt for the rest of her life. Unfortunately they tend to plug up and malfunction and she may need to have it replaced anywhere from 5 times in the first year to once in 5 years, we'll hope for the latter. She is doing great now, almost two weeks later. We have noticed a big improvement in her hand/eye coordination and overall development, she smiles a lot more and has even started to laugh! :)

Ok, It's just sad that they have hospital gowns that small.

With G-ma and G-pa Vernon post surgery.

Emma and Grandpa are now "shunt buddies". You can see the drainage tube under her skin running down the right side of her head.

Luckily they only needed to shave a small section of hair.

Daddy is funny!

Monday, July 18, 2011

An Eventful Day

We met with Emma's Neurosurgeon today at Primary Children's. She hasn't thrown up for a few days... but she is in pain. She has serious crying (screaming) fits through out the day for anywhere from 20 min to 2 and a half hours. At night she either sleeps for eight hours straight from exhaustion or fusses every hour. It's so hard to know what the problem is with any baby who cries so we have been trying everything under the sun from different formulas to gas medication with no success but were still confused since she hasn't been showing some of the "classic" signs of hydrocephalus (being unable to look up, rapid increase of head circumference, etc.). The neurosurgeon ordered another CT scan to compare with the one we had done in April and I took a picture of the computer screen comparing the two (see below).

Her second CT scan at almost 4 months old.

Looking at a cross section of Emma's brain from above, the dark shapes in the center are the ventricals that have spinal fluid built up in them. The image on the right was on April 23rd and on the left July 18th (today).
She is scheduled for surgery to get a shunt at 8:15 tomorrow morning. I'm nervous about her having to go through the surgery, but can't handle another minute of seeing her in pain and not being able to comfort her. I just hope it helps.

Tuesday, July 12, 2011

The Journey Continues

Emma is doing so well overall. I can't believe she'll be 4 months old in a week and a half! She still hasn't needed to get a shunt and the hole in her heart continues to close on its own. Also, her kidneys are completely better and we only have to give her one medicine once a day for her heart rather than four medicines multiple times a day. Unfortunately she has been sick for the last five days with an upset stomach, the poor thing. :( We're going to the doctor again this afternoon.

Our little skittle.

That frown absolutely KILLS me!

Getting fed by cousin Christsia at Snowbird.

Just a small sample of the never ending things I get to wash all day long. :)

Who knew that it could be so bright outside even when you're in the shade? We had her feeding tube out for six days but she didn't gain enough weight so we had to put it back in. :(

Apparently her Uncle Justin can speak her language really well!