Friday, April 29, 2011

Just hanging on...

I feel like I have been jerked around this way and that way with in the last 24 hours. Thursday afternoon I took Emma to the ER and Nick meet me. She started to display problems like previously with her head that wouldn't go away so I felt someone needed to see her. Turned out our doctor wasn't there and everyone was just to busy to see her and wanted us to just take her to the ER. I was PISSED and I LET THEM KNOW! I was really hoping she would get better then we wouldn't have to take her in. She just got worse so at that point there was no choice. check Emma out!
They did a CT scan and a shunt series of x-rays to see what was going on. There was a minimal difference but with the pattern she has been displaying they decided to keep her over night and see her doctor in the morning. So then it was explained to me that it really isn't the shunt but her ventricle has clasped so much on the right it has caused a suction on the left ventricle that it is causing a blockage. So the solution is to go in and make a tunnel and connect the tubing from the right ventricle to the left. The risk of this is the suction can then end up happening on both sides or alternate between each side. Now he said that he wanted to wait to do surgery since it wasn't an immediate situation. If she has problems this weekend then we can expect her to have surgery Tuesday, if we see it happen this week then Thursday. If nothing happens then we just wait until it does and when it does then he will go ahead and do surgery. That is pretty much most of it in a small nutshell. I am hoping that it will just end up happening this week. So once again we shall see what happens, all eyes on Emma.

Monday, April 18, 2011

Just relax!

So after adding everything up that has happened with Emma this week, I truly felt that these issues had to do with her shunt and not teething. She had been super cranky, sleeping more, couldn't feel her soft spot, and her forehead looked a little larger. So.. Sunday morning she woke up and it was like it was just all better, but still concerned thinking I should let the neuro surgeon know and see what he thought. Which turned into us coming in, and of course she is FINE which I knew that when we went. But geeze how many time's is she going to have to go through this before something actually happens. I think this is the most stressful part of it, because I feel just so bad that she has to go through this. We also got the same answers as the last and unfortunately no way to really know what is causing this to happen.

Part of me feel's like an idiot for not having someone see her last week and the other part of me is glad I didn't over react because she is fine again. Which is really crazy because her behavior today is totally different then it has been all week. I really want to be optimistic about this situation but my gut tells me other wise. I just feel like something bad is around the corner. I try to just breath and relax and at this point nothing left to do but pray and hope for the best.

Saturday, April 16, 2011

What fun..

Nick has been on vacation this week, and boy have we all had fun. For not going any where we have managed to stay very busy.Payton has been Dad's right hand man or you can say Nick's shadow every where he went Payton was right there with him. I know when Monday comes Payton is going to be one sad "dude".

We have been doing allot of stuff with the garage and cars so we had spent allot of time outside and I decided to stick Emma in Payton's power wheel and I had never seen her so happy. So the next day we decided to take the kids to the park and let Emma ride with Payton and She was LOVING IT! She has not been her self so it was nice to see her happy and having fun!

I know I can be paranoid and over react sometimes and after the information we got from the neuro surgeon I have been trying to just pray and tell my self that everything is ok, she will be ok. Her behavior has been strange the last week. Now I am pretty sure she is teething so again its so hard to figure out if it teething or something else is going on. I have noticed that she deals with pain by sleeping more, and this week she has slept way more then she normally does. which of course Nick thought it was less but I know its more because she is starting to have less naps and not as long. Tuesday she was so cranky and put her down around 5pm because she was so cranky and acting very tired which is very unusual for her to do that at that time of the day and she didnt wake up until 5 am the next morning. Last night she seemed clearly uncomfortable and I noticed she was rubbing her head. I think it was Wednesday when I thought to my self is her head bigger? I thought ehh maybe I am just being pariniod and I havent said anything to anyone about I figured I would just watch it and her head, so then Thursday the kids stayed the night at my Moms and Friday morning we went and got them and my Mom says to me I think her head has gotten bigger. Her forhead is more firm. So now I know I am not the only one seeing this, I feel it in my gut something is just not right. So I pray and pray that I am wrong.

So I will be calling everyone on Monday to see if they can measure her head and see if they notice anything different. Say prayers for her please.

Monday, April 4, 2011

Good Ol "Wait and See"...

So we just got back from Emma's appointment for the results of her MRI. Thursday I received a message from the doctor's office saying we needed to come in for the results. I was concerned because in the previous appointment the doctor said they would give us a call with the results, so when they said we needed to come in I was immediately concerned I called back asked if it was bad the nurse said oh no we just ask all patients to come in for results. Which probably was a good thing she said that or I would have been worried all weekend.

Anyways he compared the MRI scan from 4 months and the recent scan she just had and it shows her ventricles have increased quite a bit from last year. The increase was on the left side opposite of the shunt. Now since she seems to be doing good we will not doing anything immediately. He will have her come back in 3 months and do another MRI to see where the ventricles are at. Now there are different scenarios that could play out. Best one would be what he previously said was that during that time debris was clogging the tube witch is the result of her behavior previously back on that Friday and when we did the scan it showed that and it has fixed it self. Other scenario would be the shunt is starting to shown signs that it will malfunction soon. The other scenario is quite possibly she might need two shunts because the left is just not draining enough witch would result in why the left side is so big. Then lastly is in the months time and the next scan shows that her last scan has show consistent with the new then it could just be how her brain is because as kids grow so do the ventricles but from what I have gathered it doesn't seem like this scenario is very likely because of the significant change.

So for the next three months we get to "Wait and See"! Of course this will have me on the edge of my seat worried that something could happen and her shunt could just fail. Out of everything with Spina Bifida I feel like I can handle but when it comes to her brain, chairi and the shunt I get so worried and freaked out.

At this point I will pray and let her be in gods hand's and know that in the end it will be okay.