Monday, May 23, 2011

Waiting for a rainbow and sunshine..

After what feel's like so many dark days for this baby girl. As a Mother I am so use to being able to make it better, but everything that has been going on with her has left me to feel so helpless and frustrated.

I apologize I haven't updated my blog but I have barely been able to keep up with everything. So they found that the tubing going to the left ventricle was very short and at a 90 degree angle. So he replaced the tubing and added extra holes in the tubing so it will drain more.After her shunt surgery we had gone home on Friday afternoon and then that night at 10 she woke up and Nick got her gave her to me and she just started puking every where. So of course I called the neurosurgeon and she is still throwing up and he said ER and off we went. They did a series of scans and it showed her shunt draining on the right side instead of flowing more threw the shunt and she also had a little blood on her brain, and she was very close to being em-packed. So the doctor thought that all these things had contributed to her being sick. We ended up staying in the hospital until Monday. Then Wednesday and "HERE WE GO AGAIN"! She is throwing up and I called the neurosurgeon he said I wonder if its a GI problem. I will get in touch with a G.I doctor and get her seen because it doesnt sound shunt related since her scan on Sunday was good and her head was nice a sunken. She was very ill until Saturday and she was doing good. Ok things are better but then Monday she is not really eating or drinking, then the same thing on Tuesday. Wednesday we see the G.I doctor and she says its acid reflex. So ok if you say so, this kid has an iron stomach. I mean I could eat anything while breast feeding and she had no problems. Payton was a completely different story and the complete opposite. So give her med's the same day and then Thursday and then that Thursday night she wakes up at 3am throws up and is dry heaving and then finally I get her to go back to bed. Friday I call her G.I doctor and neurosurgeon and they say take her to the ER if she throws up again and if she doesn't urinate in 8 hours. Luckily I didnt have to take her in and got liquids down her. Saturday got her to eat a little bit and drinking more, same thing Sunday and Monday.

Then Tuesday which is now yesterday was just a nightmare. I was in tears, I just felt like I have hit the breaking point of stress and consent crying through the weeks. She was so miserable and just seemed to be in allot of pain. I started really thinking about everything that she was doing and was seriously concerned that it has become more serious. She has been having gagging problems, grabbing at her neck crying in pain, also she has this reflex thing going on where it sounds like she is throwing up but swallows it back down and then way more hick ups then normal. I have been wondering if the throwing up is also related.

So today we had our MRI the scan showed her ventricles to been very small on both sides. Which is great BUT her shunt is dialed to the lowest setting so it is possible this is causing her to have head aches and make her sick. So the solution was to dial her shunt up a little to see if it helps her feel better. The new and scary concern is the chairi and is it causing all these new problems for her and if she doesnt get better and more back to her self then we will have to seriously look at having to do surgery on it. So she is now down to 20lbs and she was almost at 24lbs so she has lost allot of weight after all this and I am so worried for her right now.


  1. Well good grief, your little one has been through a lot recently. I hope that she gets to feeling better and that you can get to the bottom of whatever is causing all the trouble.

  2. So sorry to hear all that you guys are going through! I hope she gets better soon!

  3. Oh, wow, that's such a lot of heartache to have gone through in such a short time. How scary!! I hope that things resolve themselves soon and that she doesn't have surgery in her future. Lots of hugs.

  4. I know a girl who puts the sunshine in my world!

    Lexi, Be good to yourself today - take time to laugh and play.