Goodbye 2011

2011 Recap.

1st in February my Grandpa passed away.  My last grandparent.  He was ready to go be with Grandma.  He missed her more then any of us.

Then we enjoyed easter and the warming of the seasons.  Winter does not suit us very well.

Then there is always fishing on Daddy's boat.  Not the most thrilling thing for almost five year old to do.

Then you pick a hot day in the summer to hit the museums.

And camping!

And we put the boys in T-Ball they had fun!

And look who made it to 5 years old!!!  Didn't think that would happen...lol

 Matthew in his Kindergarten class room!

 David in his Kindergarten class room!  Putting him in Kindy instead of leaving him in the pre-school was the best decision we could have made.

First Day of School!!!

Then we welcomed a new family member into our home.  A 14lb cat we named Butters!

 

Then in October we found out David needed heart surgery again :(

There has been two surgery dates, both that have been canceled.  New surgery date for January.

Thoughts

It sometimes takes bad things in your life to make you realize all the good things you have going for you. I have family that I cannot see that I miss terribly, but I don’t have to deal with the stress. I have family that has passed away that I would give almost anything to have back, but they are no longer suffering. We have more bills then money but we have a two wonderful boys and a warm house to live in. Our house is way too small for us, but at least we have a warm place to live. David surgery has gotten canceled twice now, but at least we get those weeks to spend with him when he’s not in pain, and he’s happy.
The reality of this surgery hit’s you, there is a possibility he won’t make it. During surgery he’s put on a ‘heart lung bypass machine’. He’s basically dead during that time. I ‘think’ it basically keeps his organs going so they can stop his heart to work on it. This really freaks me out. I try not to think about it, I just pray my baby wakes up, normal. Normal as he was before surgery, no brain damage, nothing just the same kid but with a fixed heart.

As a mother of a special needs child you try not to think of the bad things, it’s not easy. We’ve had the discussion “What do we do with him if he doesn’t make it?” Not a fun subject to talk about but something you should talk about even briefly if you have a child that is facing a life threatening situation. It took us five maybe ten minutes to come up with an idea. That way if it does happen we are on the same page when we can’t even think straight.

Me, with my anxiety disorder, night time is the worst. I lay in bed in a quiet house and I can NOT shut my brain off no matter how hard I try. EVERYTHING runs through my mind and I try my hardest to keep a panic attack from taking over and making me really freak out. I tend to find comfort in my cat. If I have him snuggling with me, it calms me to stroke his soft silky fur. He’s a good cat and is usually not far from my side. Paul is a good source of comfort for me too, he doesn’t really understand my thoughts and feelings but he try’s his best. I think my anxiety frustrates him because he doesn’t know how to make it better for me. He also thinks I should just ‘get over it’ but he doesn’t understand, it’s not that easy.

But like this morning… I had a rough night. I didn’t sleep good. I’m battling this minor illness, trying not to get a cold. I get up and get ready for work. I have to wake the boys so they can go to work with me, where Paul will meet me to take the boys back home since they are still on winter break. They were both sleeping so sweetly. I HATED the fact that I had to wake them. They were so cute and snuggly in bed that I hunted down my camera and took a picture of them sleeping. I had to cover them with kisses, they deserve the kisses, they deserve a happy Mommy and dammit that’s what they are going to get.

I know how to keep my anxiety hidden (most of the time, sometimes it breaks through but not to often). David is going to have surgery, hopefully they won’t cancel it again. I need to be strong for David and strong for Matthew. He’s old enough now to know that something is going on, something bad and he’s going to need my support.

Mommy’s got support from Daddy, Grandma Barb and Grandpa Ray, Grandma Anne and Grandpa Denny will all be there. We will all support each other, and have Matthew to keep us entertained why we wait for news on our David.

New Surgery Date...

January 17th... which happens to be my 34th birthday.

I told Paul on the way home from Ann Arbor last night... "I bet his new surgery date will be my birthday". 

Today went like this...

• Got to work, went to talk to Human Resources about NOT canceling my family medical leave, why in her office my cell phone rang.  (I hadn't put it on silent yet).  I looked at is and said "It's Ann Arbor" she told me to answer it.  It was Kim, Dr. Bove's receptionist giving me a new surgery date of February 1st.  I not so politely told her that was not an acceptable date and she needed to call me back with a better date then that.  She tried to pull that "I understand" line.  I asked her "do you have a child with a heart defect? No?  Then no you don't understand".  I was PISSED.
• At 9am when Dr Goble's office opened (his cardiologist here in Lansing) and talked to her receptionist.  She got a hold of the Dr. T that Paul talked to last night and told him about the phone call I got. 
• Dr. T called Paul and said that the February 1st date is probably going to be the date and gave him various reasons as to why.  Again... not good enough for me.
• 3:45pm ish.  Kim (Dr. Bove's receptionist) called.  Surgery is January 17th.  I asked her what the chances is that this one will get canceled and she said they have no way of knowing but that Dr. Bove does set his own schedule and he usually only does surgery on Monday's and Wednesday's.  January 17th is a Tuesday.  David is 1st and only case that day.  Chances of it getting canceled are slim but I am not betting my money on it.
• I've called the Ronald McDonald house and asked them to keep us on the list but switch the date.  I called hotel and re-reserved out rooms.  Now I am home with a stress headache trying to calm my butt down.

CANCELED AGAIN

We are NOT happy. They canceled on us AGAIN. At least they had the decency to do it the night before so we could come home and I can go to work tomorrow. Something about two emergency's. I understand emergencies happen but when is a heart not an emergency? What happen to this new state of the art hospital. The caseworker Paul talked to let on to there may not be enough staff?

SERIOUSLY???

When does my son have to become an emergency to get surgery?

Paul talked to a cardiologist from our Lansing office. Dr. Goble has a cardiologist from Ann Arbor that works in her office once a week. Dr. T. He happens to be the doctor that did David's last echo in Lansing, AND Ann Arbor, he was the one that oversaw the heart Cath. He happened to be the one on call for the Lansing office tonight. Paul talked to him.

Luck would have it Dr. T is going to be in Ann Arbor meeting with the surgeons tomorrow. He is going to get to the bottom of this. Why has our son been canceled on twice? He told us that David will NOT wait six more weeks for surgery. We could have surgery Thursday, Friday, next week. We don't know right now. We should have an answer tomorrow.

But this really does change our opinion of Mott, and not in a good way. They have a lot of butt kissing to make up for this crap.

I will be at work tomorrow so I cannot guarantee a update until after I get out of work but I will keep everyone posted.

A little negativity then I move on

Ugh, My anxiety is bothering me today. The doctor up my meds from 10mg to 20mg. I took the first 20 this morning. My anxiety is focused on being sick. If someone is sick around me, I feel sick, or I hear someone is. I’m not talking a cold sick I’m talking the barfing sick. I cannot handle it. I am surprised I am not a germ-a-phobia. A co-worker was out yesterday sick because she had been up the night before barfing. She’s here today and I am scared shitless to walk by her. I sat at my desk all day trying not to go into a full fledge panic attack over it. This crap sucks.


Matthew was barfy a week ago, only barfed once but I had full out panic attacks. I cannot handle puke. I am constantly afraid they are going to wake in the night and barf all over. Why? It’s stupid, it happens. What do I do if it does? Deal with it and move on. I’ve done it before so why the hell am I panicky about it now?

Doctor told me not many people are ever on the lowest does of the Lexapro that I am on and he’s actually surprised I stayed on the low does this long. So… hopefully this dosage up will help.

Why do I think it bothers me???

1. I do think I need to up my mgs.

2. I don’t do barf… period.

3. Christmas is this weekend and I don’t want anyone sick.

4. I don’t want anyone sick… period.

5. David’s surgery is a week from today and he cannot be sick, thus we cannot be sick so he doesn’t get it and if I am sick and can’t be there for my baby’s surgery I think I’ll die.

6. David can’t get sick after… he needs to recover.

7. I don’t have ANY time left at work so if I get sick, then I don’t get paid for that day and I don’t get my time back until March.

This sucks… December sucks. I’ve never felt good and always been panicky in December. A week and a half from now the difficult stuff will be over and I’ll probably, hopefully calm my ass down.

Oh and currently, both Paul and I have the scratchy throat and are popping pills like crazy trying NOT to get a cold. That’s a no no for surgery too. Plus David is starting to show true signs of needing surgery. His appetite is down and he’s getting tired much easier and quicker.

ARGH

8 more sleeps until Chrismtas

Christmas is almost here.  The boys count the day's by sleeps.  Last night it was one more sleep until we see Santa.  We are going to see him tonight.  11 more sleeps until David's surgery.  I now wish I hadn't counted that.  Gave me a little panic attack.  I can NOT wait until this year is over.

Boys had little parties at school and made some stuff.

Christmas is Coming...

Paul had his concert with the Lansing Concert Band last night.  The Lakewood Choral Society sang too.  Paul's Aunt Bev sings in that.  But my mind was just racing as I sat there listen listening to the beautiful music both groups produced.  I just CANNOT shut my mind off.

This morning didn't help much as I was checking my facebook posts.  The UofM hospital and Mott Children's hospital pages both had pictures of the first ICU patient being moved from the old hospital to the new shortly after 7 this morning.  I cried real tears as I looked at the pictures.

Why???

Many reasons why.

1.  I am kinda excited about David's surgery because I am excited to see and be in the new hospital.  Surgery means they will fix my baby.

2.  What if something goes wrong and David doesn't make it?  What if this is our last Christmas with him?  What am I going to do without him?

This cannot be happening to me.  I cannot think these bad thoughts.  As I type this he's sitting on the floor in front of me with a HUGE pile of dinosaurs.  That kid LOVES dinosaurs.  He's so healthy, how could anything bad happen?

The good thing with a mind that doesn't shut off is there is always something else to think about and get my mind off the current bad thought. We will move on and enjoy Christmas.  Take David to his surgery... three days after Christmas, and pray for the best.