Thursday, June 12, 2008

Post-Op Day 20

Yes, we're into the twenties now.

I am feeling really weary. This is taking too long, I am just tired of everything. I'm tired of being here, I just want my normal life back. I want to sleep in my bed, with my whole family at home. I want to feel like I am in control of something.

Drew is in the playroom right now and one of the child life people is playing with him so I can have a break. Dan is having lunch with a friend so he can have a break. The only one who doesn't get a break is Drew.

They said they want to do 14 days of IV antibiotics, and we are on day 11. That would make day 14 Father's Day. This will be Dan's second Father's Day in the hospital. He also spent his first Father's Day with Drew recovering from his Glenn at UCSF.

Today they tried lortab with ativan for the dressing change. It makes him crazy. At least he is happy, but he is so hyper. He's throwing things, trying to climb out of bed (while he's connected to his IV and his oxygen), running when he's supposed to be walking slowly so we can keep up with him and all his lines, and generally acting like a crazy boy.

I tried to the dressing change last night and I don't think I'll do it the same way again. I had to be the "sterile person" which meant I could touch nothing and basically do nothing to comfort Drew. Since he was still agitated it required three nurses to come in and help hold him down while I did the sterile dressing change. I think this time I will be the "dirty hands" so that I can help with the dressing change but still be able to calm Drew.

What else is going on? Drew seems to have somewhat of a cough, but no one seems concerned about it. Except me. I am telling you, it's my mother's instinct, I know this child has some sort of respiratory thing going on and that is why his O2 sats are low, and why he had a fever and why he is now coughing and why he is still on oxygen. I guess it doesn't matter if I'm right, it would just make me feel better to know what is going on.

I haven't talked with Dan yet, but I'm feeling like I might want to transfer back to UCD if that's an option. At least we can be followed by our own team of cardiologists and we have nurses who know and love Drew and will take good care of him. We can be in our own home and Ava could have more of a normal routine.

OK, that's the end of my pity party for today. Maybe I will have a happy post tomorrow...

Drew cautiously checking out the magician

Watching the magic show from the safety of Daddy's lap

Drew playing games with Kristen, Shae, Daddy & Bekah

Visiting with Baby Chloe

Drew & Shae watching a movie in his bed

Mommy helping the nurse take the tape off

Mommy has sterile hands

Drew getting a prize at the gift shop after his dressing change this morning

Playing with trains (again!) in the playroom

Making music with the musician this morning

24 comments:

Amber said...

Pitty Party...uh...I think you're more than entitled! Hang in there. We're all still praying hard! Transfering sounds like a good idea. I've been secretly wondering about that option.

Hugs to you!
Amber

UbrStrBksMom said...

yes...come back to UCD... then i can come rub your feet and feed you good meals and give you breaks. I clocked it and I can walk to UCD in 7 minutes.... faster than driving by th time I park.

Sending you hugs...hope you can feel them! maybe now that oscar is home I can sneak away and come visit!

Paige

Lexi said...

I agree with Amber you are more than entitled to be having a hard time, no one I know (except you of course!) would have lasted as long as you have!!! You are doing GREAT, according to me!!!! Hang in there girl I'm praying big time for you guys! Much love and hugs to you guys!!!

Anonymous said...

You are not having a pity party and if you were you deserve one. You should even have cake and ice cream and presents to go along with it!

Drew looks soooooo cute playing his little drums. I miss him and all of you so much.

Love, Mom

Kathy said...

oh...I'm sorry you're having a stinky day...I suppose TWENTY days in a hospital will do that to you! I can't even believe that you're talking about transferring when I'm THIS close to coming up...
Hey..what hotel are you guys staying in?? They called yesterday and the RMH is full:(...so, it's the "sky ranch inn" at a discounted rate, or the Hilton at Four times that rate per night...hhmmmmm...decisions, decisions!~

I wish I was there to be your roommate, to talk about the docs and nurses...and to watch cartoons with the kids.

If you want to transfer to UCD...I'll understand...I'll just dream about meeting you one day!!!
(you know I'm just messing with you...just trying to make you crack a smile!!!)

Hey..it's FRIDAY the 13th tomorrow...you guys have any special plans?? Maybe you should find halloween costumes and let Drew run (ok, walk slowly) and scare everyone!!!

Just thinking about you all the time...
Lots of love,
Kathy

Anonymous said...

I looked it up and Lortab is another name for Vicodin, so maybe he was just feeling good and able to feel like running around and acting like a little boy for a while, do you think?

Love, Mom

Our Family said...

I was hoping you would think of coming back to UCD...even if it's only for a few more days. It would feel so good to have Ava sleep at home, take a shower in your own home, and knowing where the closest Jamba and Starbucks are! Not to mention, if he really does have a respiratory virus thing going on, the entire rest of his medical history is already there...and maybe they will be more willing to listen to you!
I know it's been too long, but you don't want to get discharged, and have to be readmitted for the virus. Come HOME!!!!

Colin's Blog said...

Saw Drew's blog through Isaac-just checking in and wanted to say hi and say hang in there. My son also has a CHD and we have spent endless days, nights and holidays in the hospital. It's so draining. No one would blame you for your pity party!! Hopefully, tomorrow is a better day.

Sending prayers your way for a speedy recovery for Drew and for your entire family to be home soon.

By the way-Drew and Ava are both cuties!!

Take care,

Melanie & Colin

Molly said...

I love your pictures today. They are such a reminder that although Drew is going through a ton of crap, he's still able to play, smile, run (I mean walk slowly), and be a kid. There WILL be an end to this. There WILL be an end to this. There WILL be an end to this! Cling to that!
Amy

Nana Cindy said...

We're praying for you here in Texas. I've write Drew's name in the prayer book each time I go to the Blessed Sacrament and I pray for ALL of you. You are doing an AMAZING job.
Hang in there and just know there are many people praying for you...

PS. Mother's intuition is right. Listen to it.

Sincerely,
Barry and Cindy Hampson

Katie Scott said...

I agree with all the other commenters that you are allowed to vent and complain and be unhappy. I think that a transfer to UCD is a great idea!! Then we could love on all of you so much easier! As much as I love the drive to Palo Alto, Chloe was not such a fan! She really misses you and is sitting on my lap as I type. She is trying to use the mouse, but just keeps highlighting random stuff!!

Isabelle & Calista's Mommy said...

I agree you are entitled to have a pitty party or whatever you want to call it. I will bring the cake!! Hang in there friend!!!

Lori C. said...

Dear Andrea: bless your sweet heart -- you are such a great mommy and I honestly can't fathom what you're going through -- you're amazing! But, everyone's right -- you deserve a pity party and I say "don't forget the rice krispie treats, girl!"

Praying for you through this, and I think you need to trust your mommy instinct, which are totally right! I hope you can get back up here soon so that we can visit in person and support you even more.

I love you, 8 )

Lori

Carl said...

My expression yesterday was one empathy and compassion. Unfortunately it was selfish in wanting you guys closer. Sounds like many of us have the same wish, only because we want to help to relieve ourselves of our helplessness.

You truely are still in the best place you can be. Good nurses, as well as lesser ones exhist here as well as there. Drew still needs the full backing and knowledge that exhists there. On the rare chance that anything further should go on, you absolutely need the quickest access to their level of intervention.

Control. That's probably best sums it up. Awknowledging it is a great step further in dealing with your time there. Lack of control is exactly where you are and definitely where Drew is. Looking at situations with this in mind will definitely explain many behaviors you see in him (as well as yourselves).

For him, try to set up as much a routine in his day as possible. Let him make as many choices as possible. Phrase things so he can make a choice (even little things). [child life can help with this if you have questions] This does NOT mean let him run the show. Structure and discipline are the boundaries that will give him the safety and security he needs. Things that cannot be changed are just the way life is --treat them matter of factly; don't dwell. It's o.k. to let him feel your emotions as well --with explanations as needed so he won't misinterpret. Adult frustrations --like those with dealing with a hospital--need to be kept separate.

Knowledge of your lack of control and it's resulting frustration may also allow you to temper some of your responses. A knowledgable nurse should also realize reactions of family members in such a situation.

Now is the time to start engaging is some long haul stress relieving maneuvers. Discuss with Dan what each of you feel you need. Make plans. Stick with them. Extended "relief" time away is o.k. Drew need you both to both to be at your best. If your basket cases--he will be too.

The first part of the Serenity Prayer is always one of my favorites.

GOD, grant me the serenity to accept the things I cannot change, Courage to change the things I can, and the wisdom to know the difference.

carl

Mandy said...

Hi. I'm Kathy's sister that lives in Elk Grove. I keep telling her that Drew is waiting for her and Isaac to get there so they can hang out and then he'll be ready to leave. If you go to UCD, see if they have room for Isaac. I tried telling her the other day that their docs would take care of Isaac also but at least I get Eli and Chris while she is there.

I hope you get to come back home soon, but then agin, it's going to be in the 100's here this weekend so the weather there is a lot nicer.

Anne Marie said...

Hey guys-
We've been checking in daily and are still thinking of you all and praying. I can't imagine how beyond exhausted you have got to be feeling. I can't even tell you to hang in there- because I honestly don't know if I could keep my sanity for that long. Keep on posting and venting everything that you are feeling- you need to let it out, and we are all ready to listen. We love you guys- Drew's sweet little smile through all of this continues to inspire me.
Anne Marie and Family

The Portas said...

Musicians and magicians...wow! Lots of cool stuff!

Andrea, you are entitled to your feelings, that is for sure. You guys have been through a lot emotionally. I cannot imagine what 20 consecutive days in the hospital must feel like. You're doing such an amazing job and you are so strong and you WILL all get through this. It's such a minor blip on the radar screen. I know it feels long and stretched out now, but soon it will all be over and you'll be enjoying your own cozy bed and you'll have your whole family right there with you.

Hang in there. Every day Drew's body continues to heal a little bit more. Things are heading in the right direction.

Saying lots of prayers for you ALL!!! XOXOXOXxooxox

Taria M. said...

Andrea - how could one not grow weary and want normalcy back after 20 days in the hospital, watching your baby go through something so tough? God bless you for your strength and openness!! I will be praying for some changes to happen very soon for you guys, and for God to give you what you need to carry on until those changes happen. You are a strong tower! All of you are. Not only are you being used as an example to many of us, and to your children, but you are all going to come out of this loving God more deeply. You will come out of it with a stronger relationship because you came to Him during those most difficult times, and He was there.

I'm sending a lot of love and (((HUGS))) your way. God bless you all.

With love,
Taria

Beth W said...

Andrea-
We've been offline for a few days, so i've been out of the loop. We are still praying for you! I don't think what you are having is called a pity party. It is called dealing with your child in the hospital for days! Give yourself some grace!!

Love you and praying for your decision about transferring!
Beth

Baker Family said...

I have to believe that what you are experiencing is the worst case scenario. (for my own peace of mind) You really are handling it beautifully, I know the feeling of "living" at the hospital, but to not have your physicians that know and care about Drew, I hadn't thought of that aspect. (yet more information to help with my journey) As I experienced my chaotic evening of putting 3-2year olds to bed, dealt with the hormones of a pre-teen girl, video-gaming 12 year old and an active 8 year old. Giving Meds, breathing treatments, dishes and laundry, I thought of you. (I'm praying) I remembered to be thankful I am in my home dealing with "everyday" life. In my own experience, a hospital can feel like a prison and I am praying specifically for joy, peace and a renewal of your spirit!
amber

Samantha said...

Andrea, I am so sorry you guys are still stuck there and you are allowed to have as many pity parties as you want...you are going through so much and this is not easy. I am so sorry. I know that you want everything back to normal and it will be soon. Hang in there!

Heart Hugs,
Samantha

Amy said...

Hey guys hang in there, easier said than done. Taylor and I sit and go through the blogs, he ejoys seeing Drew and askes to pray for him every night! Your family is amazing and very strong even though it doesn't seem like it sometimes. Keep your heads up it will all be over soon and you will be able to be home as a family again.
Amy and Taylor

Carrie said...

You are amazing! Just know that! You are intelligent, strong, capable, intuitive, and loving (just to name a few). I think sometimes it just gets hard not to be able to control the situation (and I know you well enough to know that you like to have control so hang in there and use that for Drew's advocacy). You have been immensely strong and courageous through all of this.

While it stinks that Drew is in the hospital on Father's Day, just know that Father's Day can be ANY DAY!

Sometimes we don't understand the purpose of the journeys we have in our lives...but I truly believe that God has a plan! (Drew looks so adorable in these pictures.)

Anonymous said...

Hi,
I can totally relate to wanting to come back to UCD, they are awesome if that is an option that would be great. If Drew ever needs a budy to play trains with, I know I have two boys that would love to play, please let us know. Take care and I hope and pray once the antibiotics are done you can come home or atleast tranfer, trust your mommy instincts you know your baby better than anyone else.

Love,
Rebecca Myers