See Christian and Lola's ISR video!

Tuesday, July 21, 2009
Christian made it through his surgeries without a bump. He has a tracheostomy in his airway for breathing and a gtube in his stomach for eating. I was expecting him to be groggy for half the day but when he came up from surgery, his eyes were wide open and he was moving his arms and hands around like he was ready to go. It was so great to see my baby's face again. Absolutely nothing was taped to it. His mouth and tongue are swollen from the intubation tube, the taping and retaping, and his mouth never being shut for two weeks. But I love my little fishy face. When his swelling comes down, I'll post before and after pictures so you guys can see his progress.

I feel good about our decision. And the funny thing is, Christian's been coughing and showing gag signals today. So we know it's there, he just has to work on getting them strong enough to substantially clear his airways and we can remove the trach. I know he'll do it in time. He's also breathing through his nose, which is funny because he snorts a little. I really think just getting that tube out of his throat has made him so comfortable. I also think it limited him with his progress. Now that it's gone, he can move on.

An Occupational Therapist came by yesterday to teach us some range of motion exercises and those are fun because they help him stretch. There is so much we have to learn about taking care of trachs and gtubes. Gtubes are simple enough but we'll need to take 6 hours of training for the trach. That starts Thursday. Because his flexing and posturing actually point his feet, in order to encourage his foot to move back into a right angle for walking, the doctors suggested high tops. So Daddy is going out to buy Christian his first pair of Chuck's Converse high tops. Not sure this is what the doctors had in mind.

So what's next? CPAP trials start again tomorrow. We wanted to give him a break today and leave him on a low level of oxygen during his surgery recovery. But we'll start weaning him off the vent tomorrow. I have no doubt he'll be fine. He seems ready to move on to the next phase and so are we!

Thank you for all of the prayers today! They continue to lift us up and move us through.


Pippa said...

Great news! I am glad that you have accepted the surgery and moved on. Sometimes when we don't want something so much we can fight the wrong battle and that takes time and energy. But as ever Shauna you have chosen to be positive and work with what you have =)

So pleased that Christian face is not covered up. I bet you want to kiss his swollen face all over =) I would love to see photos of the lil guy, I miss seeing him in your siggie.

I hope you all have a good day and that Christian continues to shine through!

gavman306 said...

Great news on all the progress, surgery, and getting to see his cute face! I believe he is getting through all of this so smoothly because of matter what is thrown at you, you take it as it comes and remain so positive. You are the bestest mommy Christian could have gotten!!!! I will continue to pray for the cough and gag reflex, although it sounds like he is't too far from that! Keep going Christian you are awesome! I hope today is a wonderful day...and those sneakers....adorable!! So cute!
God Belss You!!!

maz said...

I'm so glad Christian has come through the surgery with flying colours...and seems to be working on his cough! Yet more yeas for Christian!!! I bet there's been a lot of loving for his 'little fishy face' from you and your family! I'm so glad you feel happy with the decision you took too - sometimes you just have to take a leap of faith. And you do it with such courage and strength of mind. Can't wait to see his new pics and hope they include his new cool shoes! (((hugs))) xxx

Amy said...

Hello I have been following your story since it was posted on a MB I am on. I hope and pray that everyday brings improvement in his journey!

The reason I wanted to post today is to let you know that I was praying for your son. Also I am a part of another board that I think you might find helpful, the gals are great if not for anything else for information. I have been on this board since my son had a NG placed at 9months, and then a Gtube at 1yr, its now been 3+years of Gtube feedings and I don't think we'd be where we are without the wonderful group at P2P. If you'd like you can read a little about my son on my blog ( My prayers are with you and your family.

Amy mom to Tyler

E ♥ said...

Hi Shauna,

I am a fellow FF mommy that heard about your story from another FF mommy. I've been reading through your blog and Christian's journey, and want you to know that I am praying for Christian! I am so pleased to read that his surgeries went well this morning and that he is progressing so well. He is such a fighter! And you are such a strong Mommy for him. Please know that there is so much support, love, and prayers pouring out for Christian and you! I will continue to keep you all in my prayers!

God bless you!

ferfischer said...

Great news! Onward and upward Christian! Your whole family is doing terrific! Have fun in the training sessions, and don't feel scared to do all of the stuff with him! Hugs to all of you!
Jenny (Cici's mom)

Citrienen said...

I'm so happy for you Shauna! Christian seems to be making substantial improvement - things are really starting to look good! Thinking about you all the time.
~suzanne~ from the August mums

mrsdeiser said...

Glad to hear that the surgery went well and that your getting cough and gag signals! :)

Dora said...

So glad everything went well today, that baby of yours is a true Leo. Also relived to hear that you are happy with the decision and it certainly seems to be the right one. Can't wait to see pictures of his beautiful little face again! Love and off to pray for tomorrow to go smoothly.

Jendioguardi said...

Awesome!!!!! I am so happy that he did well during and after his surgery. This little guy is a true inspiration. What a doll. We are still praying and will continue to pray for his continued recovery. Much love!!!

Jen said...

Glad everything went well!! Every little step forward is a step closer, and as you can see even in this short time, those little steps look like something pretty big when you add them up, just from pictures alone!

As for the Chuck Taylors, we have 3 people in our life with Cerebral Palsy, and all of them swear by Chucks (with and with out their braces)! Also, Chucks withstand being washed in the washing machine very well, just in case! My oldest son was reading with me today, and he wants to see them when he has them on, as I am sure most do.

Keep up the good fight!!!

Candi said...

I have some Chucks that I would be more than happy to send if you haven't already purchased some. I bought them on clearance (for less than $2 at Toys R Us!!) and just haven't had anyone to give them to. I think I have a pair of 5, 6, and 7 if any of those will work. They are all black.

Please let me know. Praying for your precious boy!

Karin said...

Complete stranger here just letting you know that I am praying hard for your beautiful boy. He will thrive with a wonderful mama like you. Hugs.

Norma said...


You dont know me but I am a friend of Brookes and have been keeping up on Christian's progress. I am so pleased to hear of every milestone the little guy crosses. My boyfriend and I currently reside in England. We attended Church today and we both prayed for Christian's recovery and strength for you, Manny and Gabe. Just wanted to let you know that prayers ARE truly coming from around the Globe. God Bless you and yours.

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