Monday, March 03, 2008

A lot to process

This weekend has been a rough on for Gabe. Friday he fell 2 times landing on his shunt reservoir and valve. He scrapped up his side pretty nicely and shifted his valve to the left. Being that the reseroir and valve just sort of plug into each other, I was a little concerned that he could have broken the connector piece or completely disconnected the shunt. He had a squishy spot around the valve and it could not tell if it was swelling from the trama or a CSF leak. He was in considerable discomfort. The third time he fell was out in my mom and pops driveway but he only landed on his bottom and his back was a little sore. His shunt catheter goes between 2 vertebra into his dura (spinal column) so his tubing could have been crimped a bit. Dose of pain meds and I allowed him to stay at Gramma and Grampa's house. We discussed the falls and he said, "MY vision was blurry and the room was spinning and my legs and arms were tingling. Then I was on the floor".

Saturday I go to pick up Hannah from my mom and pops for rehearsal and Hannah tells me, "Gabe fell". Gabe comes up and tells me I fell down the stairs.
Me: How many stairs? Where did you hit? Do you have pain? What was happening before you fell?"
Gabe" I fell down 4 stairs on the spiral staircase, I hit my back on the backs of all the stairs. My back hurts, my side hurts and my head, neck, legs and arms hurt. My vision was blurry the room was spinning and my legs were nailing".

I get home from dance, talk to my mom, Gabe is doing well. He wants to spend another night and play pool. I let him.

Sunday morning my mom drops them off on her way to work. "Gabe's legs were bothering him so much last night, especially the right one, that he would not walk on it. He scooted around the house on his bottom. (On a side note Lindsay also lost her 3rd tooth there Saturday night---Hint Hint Gramma, A PHONE CALL Would have been nice ;) )

Thing 1, 2 and 3 get ready for dance and we leave. We arrive at 10:45am to prep for costume fittings. Rehearsals are not until 1pm & 2:30pm. The kids play with the other seamstresses kids and all of the kids are awesome. Go to lunch at 12:20 and everything is wonderful. 1pm Hannah and Luci go upstairs to the studio and 1,2 Brandi (Luci's Mom and my Co-Backstage coordinator) finish our lunch. 2:20 1 & 2 go up stairs for rehearsal. Brandi and I pay the bill. Upstairs we go. Brandi leaves to run a few errands, I chat with some of the other moms. Jennifer brings me Gabe. He is pale and clutching his head. I know what this is but I ask him. "He head is killing me, My head is going to collapse in on my brain". He lies flat and feels better. He decides he is going to go back up for rehearsal and within minutes he is back on the ground in the studio. I go into studio and he does his best to participate. By 3:30 he is not able to sit up without wanting to throw up. 4pm we leave to come home. The ride on the way home was torture for him. Being upright makes his head hurt worse because he is having low pressure issues. He needs to lie to bring his pressure up. He finally falls asleep from exhaustion from crying.

The rest of the night is rough. Gabe is up and down. Finally he is excited to go to bed because he knows he can lie flat. He sleeps the entire night. Which for us is a sign that his pressure is low. When it is high...he is up throughout the night because lying down causes his pressure to get too high.

Around 11pm while I am all snuggled up in my bed on my lap top reading caringbridge pages/carepages/blogs I get an email from Frim. I had emailed updates to hi over the weekend to try and figure out what we can do for him. His email really put me in a bad place. His email went to a place where I did not want to go back to again...

"...I think that one thing we need to do is repeat his brain/C-spine MRI to make sure that the new drainage dynamics have not caused his cerebellar tonsils to be pulled down into his cervical spine again.

Please try as best as possible to keep him from hitting the shunt stuff . .."

If he has again herniated we have to do to the discussion of another decompression vs a re-expansion of his head. I am not sure what that means for his shunt. If we would have to move where his shunt is placed or what. One of my worst fears was actually written. Visible to my own 2 eyes.

A little while later we again emailed and decided in the AM to reset Gabe's shunt up to 5 and email him Wednesday.

This morning Gabe crawled into my room and climbed on my bed. Everything aches, everything hurts. He would not even prop his head up on a pillow. He crawled out to the living room so that I could re-program him. Flat on the couch. Noon, I fed him while he was lying on the couch because he was still having symptoms of low pressure. By around 3:30 he was able to get up and move around for a small amount of time before needing to lie down. He ate dinner at the table with the family. By bedtime he was happy to be in bed. Pillow on the floor. Happy but hurting.

This is where we are at. MRIs for the kids being scheduled. Concern of the unknown.

On a side note I would like to add, I have very few bad days. Or, when I do I do not always share them with but a few people. I do not post them to our playgroup board. I post NOTHING about my kids health issues on the board anymore.

You know, not many people can understand what is going on. Some people know because they are walking this journey with their children. Some are family and are walking this journey with us. There are a very few special people in my life who have taken the time to google chiari, google PTC, google Cranio. They have developed a working knowledge of neuroscience. They understand the amount of pain that is involved in these children's lives.

They allow me my dark moments. They allow me to vent and be mad at God. These are all OK for me to do. I am allowed to say that sometimes I feel like I am being punished for "things" I did. Do I honestly believe it? No. But I am allowed to admit that sometimes that I feel that way. I do not need lectures on how I should feel. I do not need lectures on God. I get on my knees every day and pray. Every time they take my child back to surgery I turn it all over to God. HE knows I have my moments. I am not perfect. He allows to me have these feelings and He gives me the strength to get through the next day, hour, minute or second.

I have been on this journey for over 5 years now. He has gotten me through every surgery, every recovery every day. For the most part I have weathered it well. I am allowed to have a breakdown every so often.

This is my blog. This is the only place that I can write my feelings on how I feel. The caringbridge page is about Gabe, Lindsay, Hannah and Fayeth. This blog is about our family or whomever needs an entry. This is the place I come to put my feelings out there. If you want to comment, that is fine, that is your choice. But if you cannot be supportive and uplifting, DO NOT POST A COMMENT. Just leave. I will be authorizing comments that way I do not have to go back and delete comments.

6 comments:

Anonymous said...

::pokes head in...looks side to side:: Michelle? You in here?? I'm here, supporting and uplifting you!!! xoxo :D

Anonymous said...

Michelle,
You are one tough Momma, and I personally am so glad to call you my friend!!
Shelly

Kristen said...

((((HUGE HUGS))) You're an amazing mom Michelle!! Don't let anyone tell you any different. You know, and God knows it. Nothing and nobody elses opinion matters.

Lynn said...

Huge hugs, you have every right to vent and say how you feel.

Anonymous said...

All the best to you. I have never wished you anything but the best. I too drop to my knees to pray and you and your family are ALWAYS in my prayers. You are truly an amazing woman- truly! God bless you and the family, Michelle. I not only respect you but admire you :D NOt only do you tend to your own family but when I needed some support you were right there and I will always be thankful.
Hats off to you, Tammy

Brenda said...

Hi Michelle, I just found your blog through Kristen's Blog (Snips Snails and Pigtails) and I have had a chance to read some of what you and your family are going through and I just have to say my heart goes out to you. I personally have not gone through what you have gone through but I have gone through other things in my life that have been tough for me (infertility being the big one). My husband decided to do Foster to Adopt to help build our family after being told that we could not have our own children with out the help of doctors. That was a tough decision and one that was a long 20 months and still continues to be tough with dealing with Birth Relatives since we have an Open Adoption.

Sorry, I didn't want this to be about me...I just wanted to let you know that I too have been in that place wondering if God is punishing me for something I have done. It is normal and God understands. He knows us better than we know our selves. And he loves us more than we can ever imagin.

You vent all you want...and don't listen to what anyone else says. I am so glad to find your blog and get to know you better.