Monday, February 28, 2011

Warning mad elephant...

My mom was watching TV the other day and saw this scene from Dumbo. She said it reminded her of you and I and I agree.

This is exactly how I feel.

Jailed. Locked away from my baby. Locked away from our lives.

I even think the "danger" and the "mad elephant" signs are very fitting. At least I think the Dr's, and nurses sometimes think so.

I know sometimes I feel like a "mad elephant" fighting to protect her child.

I'm tired. Tired of fighting, tired of being thought of as a bitch, or at least difficult, by the medical staff.

I'm hitting an emotional and physical wall more and more often and sometimes I just don't think I can do this another minute.

But it only last for a while. Usually till I'm with you.

It's amazing how my love for you fills me and heals me. I know I am where I am meant to be. You are far beyond worth everything this is costing.

I know your Dad and I will keep on going till we have you home and well. As long as it takes.

But I'm seriously wondering if someday, in the distant future, when we are back on even ground again if I won't go through some kind of post traumatic stress from all of this.

I might just have to take a mental break or something and deal with all these emotions I'm just pushing aside that I don't have the energy or time to deal with.

Ah well, I doubt I'll ever have the time.

I don't think I will ever be able to watch Dumbo again without having flashbacks though.


So anyway on to you....

Your breathing has improved a lot but I honestly can't say if it's better than before the surgery or not. We still have hope that you just need more time to heal and, with time, we might see a great improvement. But both your dad and I feel we haven't seen anything yet to make us think there has been any great change in your breathing.

Today Monday, the last day of February, your still on the vent through the nasal cannula. We are decreasing the support a little everyday and your labs have been pretty good but not great.

We are going to give it another week to see what happens. Maybe things will change. I has only been a week today since your surgery.

I just can't let my heart hope. It hurts too much to hope right now.

Since I haven't taken any pics lately. I'm posting some videos I took of you. The first two are ones I took on the longest night of our lives.

As bad as you look and sound in these the funny thing is they were taken in the early morning hours after you were starting to show improvement. I wanted to show you a bit of how you were breathing and what you went through. Notice on the second one how deep your chest is retracting as you try and breath and remember this is when you were doing a ton better.

I should have done some in the early evening when you were really struggling but I was too scared to think of pictures or video then.

This one was taken yesterday while you were awake and playing with me. While we don't know how good your vision is I now have no doubt now that you can see. Your personality is starting to come out and it's so much fun to be with you.

I'm too tired to give a blow by blow of the last few days, though someday I think I should, so I will give you the short version.

The Dr's wouldn't start your feeds. I fought them and got them to start them.

The Dr's wouldn't increase your feeds. I fought them and got them increased.

The Dr's wouldn't increase your feeds more. Yes, I fought them and well you know the rest.

The Dr's stopped your feeds. Nobody knows exactly why. Maybe 'cause you were a little gassy, or because your tummy was a little distended, or because it was Saturday, or because they are crazy food Nazi's or something but...of course I fought them and of course I got them started again.

So now it's Monday early evening. The Dr's are only increasing your feedings by 3cc's every 12 hours for no apparent reason. At this rate it will take 2.5 days to get you back to full feeds. Way too long for you to be without proper nutrition.

So your dad and I are going to go have dinner before he heads back for the week.

and I will go and fight them.

Because I am a mad elephant and I must protect my baby.


dxeechick said... Best Blogger Tips

I would have decorated the baby's room in Dumbo, but the merchandise is hard to find! True story with the mama being upset!

Melissa said... Best Blogger Tips

Keep Fighting! Keep doing what your doing! Your Mason's only hope.. Dr.'s nurses therapists etc.. all have more patients but you only have Mason. You know him the BEST.. Who cares if you are being a pain/bitch this is your child its your duty as far as I am concerned! The video's brought me to tears, I don't even know you but have been following you since Mason's birth and I wish I was close so I could give you a big hug You Amaze me with your Strength and Love! I am praying hard for your Mason everyday and for you also.. Keep Fighting Mason your a RockStar! And your absolutely Adorable!

Melissa (mommy to maccoy TOF)

sherthebear said... Best Blogger Tips

Hang in there mama elephant, you are an amazing mama. Mason is lucky to have mad elephant on his side to fight his fight. stay strong. love you!

Anonymous said... Best Blogger Tips

Oh how I remember being that mama elephant. Honestly 12 years later I am still her just for different reasons now. Keep fighting for your boy, you KNOW him. They know medicine but you know him and do not ever forget how important that piece of the puzzle is.

Justin and Victoria Nelson said... Best Blogger Tips

was wondering if i could email you, or if you could send me an email ( that i could respond to?
just wanted to share some personal experiences, and let you know that you should NOT be feeling like the bad guy! you are MAMA, and you are Mason's voice!
we are praying...

Ketcham22 said... Best Blogger Tips

Oh I know how you feel! I hate having to feel like I'm the bad person, I don't understand how it's so hard for people to listen to ARE his mother! Don't stop though, I know it's hard, we're in the same boat....well kinda :o)
We're thinking about you and sweet Mason and know that you are in our prayers as well.
By the way, thanks for your prayers too!

The Houston Family said... Best Blogger Tips

Hang in there girl. You probably will have some PTSD. I did! For about three years every time I drove by the hospital I would start to shake. I had to drive by it at least once a week for therapy. 9 years later I still hate to go by hospitals, but I don't shake any more. If Mason is not on medicaid yet start talking to other parents in California and get him on. There are medicaid waiver programs that are based on Mason's income and not yours. They are usually retroactive for 90 days. Go get a mani and a pedi. You will feel better and you deserve it. A good message would help too.

Sabrina Hull Photography said... Best Blogger Tips

Your story is both heart breaking and inspirational. You are being a mother and fighting for your child. Don't let anyone make you feel bad for that! I pray for your little Mason and your family. May God continue to bless you all, in the hard times and in the best of times. No one understands what its like when you have to walk out of the room and leave your child in someone elses care. You walk away praying that he/she maintains and gets better until you return. You try to get rest, but what is really rest during this trying time. Your mind is never at ease unless you are sitting at your childs side. As a nurse, a mom with the experience of a nicu baby and a wife it was so hard to maintain my emotions during my daughters nicu stay. I cannot begin to imagine the pain, agony, stress and anxiety that you and your family are experiencing. I pray for God's continued guidance and blessings!

Jessica said... Best Blogger Tips

Precious Mason has touched my heart and my 3 years olds heart too. We pray for him, I show her his pictures and videos. She is very moved and helps me pray for him. God has a plan for everything. I just wished sometimes that he would let us know the details of his plan ahead of time. Yes you will have some emotional ups and downs afterwards.

We had a different traumatic event take place with our kids last year. Watching dumbing also brought me to tears. I remember going into our church and just curling up on a pew bench just crying and crying asking God, Angels Saints, everyone to please be with our children and to help us. I truly believe God is with you, and we are with you too. Keep being a Mama Elephant, fight for your baby and most importantly keep praying...

Be your sons protector! Ask for second opinions and YES question anything you feel is necessary, You are his Mama and follow your instincts!

Doctors, nurses are just humans with only human limitations.. but God is limitless and loves Baby Mason and your family so very much.