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Friday, July 17, 2009

Emotionally Exhausted

Today was frustrating and emotionally exhausting.

It started out fine. Christian had an okay night. Just yesterday I spoke with the doctor about taking it one day at a time and letting Christian lead the way. I told her I don't need nor do I want a timeline for his care. I'm going by Christian's timeline. She agreed and said she was on the same page. Now there has been rumblings about a tracheostomy procedure which will allow him to breath on his own (kind of). I believe that Christian won't need one but the rumblings come from him still having a poor gag reflex and cough. I think he needs just a few more days and then we can make that decision.

Then came rounds.

This is where the doctors discuss a patient's care and plan of action. Well this is where the doctor decided to let everyone know she thinks he needs a tracheostomy and a g-tube (for feeding) and she's going to send the pediatric surgeons to speak to us about it TODAY. Um, what happened to being on the same page, letting Christian lead the way, taking it day by day talk we had yesterday? Was that just small talk? And she also added that she was sad to say but she didn't know if he would ever be able to breath without one. That's right, you DON'T KNOW, SO DON'T SAY IT. And this is based on a weak cough and gag reflex not NO cough and gag reflex. And why are we rushing? Can't we wait a few more days? This just made me mad. Because I felt like they were really pushing this and pushing for it fast.

So the surgeons visited and I had stepped out so my husband spoke with them. Luckily, they can't get him in until Tuesday or Wednesday. I'm comfortable with that. He gets those few extra days so that if he's strong enough, he'll show them. If not, we'll do what we need to do to move on to the next stage in his recovery. The way the surgeons explained it, the breathing tube is actually slowing his recovery process and that's why we have to move on with either a trach or progress with his cough and gag. I understand that. If it means Christian healing faster, we'll do it.

Another thing that pissed me off was that I found a Hyperbaric chamber available at the other major hospital in town. So I called and the woman said, "Yes, we've treated another infant who was a victim of near drowning. I'll have the doctor return your call." So he returns my call like this...

"This kind of treatment has not been shown effective with your son's type of condition. We are unable to treat you here but you can call this neurologist (so and so, forgot her name) who may be able to help you with hyperbaric treatment....okay, bye." It was that cold and dry. Luckily, a friend who's gone through the same thing said the HBOT service a hospital can provide isn't sufficient and that I needed a private facility. It looks like Phoenix, here we come! The lady there said she'd be happy to treat him and to get him HBOT as soon as he can travel. Again, here we come!

So after that, I'm already upset. I stopped home for some clothes and started looking at our pictures from Key West taken a month ago. I keep thinking if I had only know what was to come, maybe I would have been more patient, I would have spent more time playing...I would have been better. Well you know where that leads. Buckets of uncontrollable tears.

I'm not done. I get back to the hospital and the resident comes in. She says they were discussing long term care and that when Christian is ready to leave the hospital, maybe it would be a good idea to consider a home for long term care as a transition back to home. Her reasoning...because I'm pregnant and it might be hard on me. Is she f---ing kidding me? I was in disbelief. First of all, this is OUT OF THE QUESTION. And second, how much faith do you have in my son? If you don't have faith that he will continue to get better, I want another doctor.

After my husband walked in the room, I lost it. I couldn't take anymore. I didn't want to see or talk to another damn doctor again. The nurse I had today couldn't be found for most of the day, which seriously pissed me off. It was one of those days.

But it's done. And we're on to the next one. I can't wait to wake up to a new day tomorrow.

10 comments:

sunflourchic said...

oh shauna, i'm so sorry to hear what a rottendtime you had. i really wish they would listen more. i hope the next couple days christian shows him what he's got and won't need the tracheostomy. love and prayers for both of you!

Pippa said...

Shauna, I'm sorry today was so hard but tomorrow is a new day! Keep looking forward until it's safe to look back with a smile.

You are doing great....I am sending you lots of hugs.

I hope that Christian will not need the trach next week but will give you lots of new hope instead.

maz said...

Shauna...So sorry you had such a hard day yesterday. There'll be good days and bad days - and I'm praying for each and every day to be good to you and Christian. Little man. We're all here for you...Maz xxx

Cindy said...

I'm so sorry you had such a rotten day yesterday, Shauna. It does seem a bit rushed for a tracheostomy (especially since they JUST started the CPAP trials just yesterday or the day before?) -- that was my first reaction -- but I guess if they feel it will help his recovery long-term, then it's a good option. They can always reverse it once he doesn't need it any longer.

It must be so difficult to not look back at those pictures and have those thoughts. I'm so sorry. Sometimes I really wish we could turn back time. A do-over, like in elementary school. HUGS.

I will continue to pray that Christian shows them in the coming days how strong he is and that these other interventions are not needed. Just know that you're the best mommy to Christian and he needs to feed off your strength to keep up his fighter spirit.

Brooke said...

I saw BLAH to the doctors!! I'm going to pray SO hard for his cough/gag reflex to kick in so the trach is NOT necessary! He's proven to be such a tough little guy I think he has more in them than they, or even we know!!
I hate that you had such a bad day......I guess those are inevitable.....just know that if each of us could take a little of your worries away and put them on ourselves....we would.......take care of yourself Shauna!! Much love and prayers to you and your family and especially for the healing of Christian!!

XOXOXOXOXOXOXO

Kristen said...

I am so sorry you had such a painful day. It seems like things just continued on a downward spiral. I agree it seems like they are rushing but if it is best for Christian long-term, I guess you will have to consider that too. You know your son better than anyone so you will do what is right.

I continue to pray that better days are ahead for all of you. XOXO

Eliisa said...

Oh Shauna, I'm so sorry you had such an awful day yesterday. Hopefully today is already much better. As for the negative doctors, nurses, and other staff? SCREW 'EM. Christian will show them all, and they'll have to eat their nay-saying words.

Caroline said...

Shauna, even if they DO a trach, does it mean it's permanent? I want to say I met someone once who had a scar on their neck from a previous trach. Perhaps that's an option? I don't like the way they are treating you. Follow your gut. You need good doctors and you have rights! Christian has rights!

Donna and Jim said...

Oh Shauna - I'm thinking of you all the time. and of little Christian of course. Hang in there. You guys have to fight for him and sometimes that means butting heads with the doctors.

Theresa said...

Shauna,the Irby's are praying for Christian's healing and we are praying for the lord to give you and Manny peace and strength to endure all the things you are going through. We are so sorry this has happened, but hold fast to your faith. God created the world, he created Christian and he still has the power to heal. God is a mighty, awesome God. And it sounds like he has given your son the heart of a fighter. I will be lifting you up in prayer. Please call if there is anything I can do to help you. (749-4183)
Much love to you all.
Theresa Irby

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