Wednesday, March 26, 2008

Wed Night :-o

Today Charlie had a couple adjustments. His clonadine has been stretched out to every 6 hours and he has tried to go back on to formula. He had a pretty good morning and then in the afternoon started to get fussy. Aunt Susan asked the nurse to vent his tube and when they did there was a lot of pressure and some backed up formula in his stomach. The nurse turned off his feeds for one hour and he calmed down. Then the feeds were resumed at 1/2 speed (20). The chest X-ray came back great! So that is a relief. I am starting to learn how to care for his g-tube with daily dressing changes and how to give medication and formula through the tube so I am proficient when we go home. Tonight about 9:00 the nurse checked what was in his stomach again (called checking residuals) and there was backed up formula so she turned off the feeding and consulted the resident. The resident said to go back to IV fluids and Dr. Such-Neibar would come by first thing in the morning. Now an hour and a half later, the nurse checked the contents of his stomach again and it is finally empty.

The audiologist came by today to go over the different options of cochlear implants. He is recommending 2 different kinds because of their ability for feedback that doesn't require patient cooperation. It is so incredible that this is even possible. I'm so amazed! The operation takes about 2 hours and the biggest risk for Charlie will be going under anesthesia again due to his decreased mental capacity. He has had 3 surgeries so far while at PCMC, but this one is more elective so it is a harder decision. The last surgery was a little more difficult to come out of anesthesia (that is when his BP started to go low) so it something that Rob and I had to carefully consider. We feel that his quality of life would be increased even by partial hearing so right now we feel it is worth the risk. The doctors also feel he is medically stable enough and have been great advocates for the best possible outcome. I think the surgeon, Dr. Warren, will by soon but it is the audiologist that does all of the programing of the implant and all the hearing training afterwards. The device will not be activated for a month after the implant and then Jason said it is usually up to 6 months before parents report that the child can hear.

Sweet dreams everyone...

12 comments:

Anonymous said...

Thanks for the update! I always check on Charlie just before I go to bed! I am glad that you are learning how to care for Charlie when you go home. I'm sure there is a lot to learn, but I am confident you will handle it just fine. I continue to pray for your health as well as Charlie. Take care of yourself whenever you have the opportunity. I know your family tries to help a lot. the implants sound incredible. It is hard to believe that medicine is so advanced. I know you are trying to give Charlie every opportunity you can. Sweet dreams! I hope your night is calm and Charlie can rest.

Anonymous said...

Good news for Charlie! His little journey through life may be long and difficult, but he is a SURVIVOR, and he will be so blessed to have parents like you, ROb and Ang, who will love him and take care of him and who will do ALL you can to help him be able to accomplish the most he can in this life. Our prayers are continually with you, day and night, for little Charlie to be well.

Anonymous said...

Sleep well baby Charlie!

Meghan said...

is the doctor frank warren? i am excited about his implants. yahoo! and i think you are right ang, he is just not a kid who wants to eat all the time. have you talked to them about his previous eating habits?

Anonymous said...

Great news on the chest x-ray. We are so happy to hear he is doing better. We are praying for great luck with the cochlear implants. Keep up the good fight Charlie, we are all pulling for you. And keep up the great work mom and dad. You are an inspiration to us all.

whitney said...

Once again I am in awe of the way you and Rob have been making tough decisions and learning so much in order to help Charlie - you two are amazing. I hope Coop has a better tummy experience today and they can work out all the kinks. That cochlear information is incredible, the things that little device can do and what it will do for Coop.

Roxey said...

You two are not only the epitome of faith, but of patience. I pray the day is better with the feedings and that Coop remains healthy enough for surgery Monday. Does everyone wear masks in the room? Just wondered for pre-surgery precautions.....

Amanda said...

You don't know me but I've been following Charlie's updates and your strength since about mid February. A friend of mine is related to somebody whose related to you, I think, anyway I found your blog in round about way.

Anyway, you guys are amazing. You've been through so much and still have a lot to endure to make your "new norm" seem normal. Your faith, strength, humor, attitude, smiles, tears, patience, and so on are all so real and so positive and inspirational to all.

It's taken me a while to write anything but I decided to because I think you two are awesome and, why not. Your little Charlie resembles both of my boys. Blonde hair, blue eyes, and just the sweetest little guy ever. The first time I read about Charlie and what you guys are going through each day, it brought back a flood of memories of a few days we spent at PCMC in the ICU. I just started bawling looking at some of the pictures because they reminded me of my little guy. Get comfy, this might be kinda long.

A little over 3 years ago we had a tragic accident with our 15 month old son, Payton. He was backed over by a car in our driveway while we were in the middle of moving into a new home. To make a long story short, he lived for three days at Primary Children's (they're amazing aren't they)? He never regained consciousness after the accident. All the damage occurred to his brain and there was just too much pressure for his little body to handle.

Our three days at PCMC was for us, what we needed to have that time with him. It was a huge rollercoaster ride but we had many spiritual experiences, came to accept our Heavenly Father's will, and we're able to "by coincidence" meet the family of the little girl that was able to receive our little boy's heart. (another story for another day)
By no means was it easy, (no trial is easy, but I do believe that with every trial comes many blessings) it was the hardest thing I've ever gone through in my life. Now, three years later, it's still hard but in the same sense I know my little boy still lives, watches over us as our guardian angel, and has blessed another family with more years with they're little girl. (we are still able to keep in touch with her)

I could go on and on forever, especially about my little boy or my awesome husband, family, and support we had and still have, but I won't. Aren’t family and friends great, they help out so much, especially when it’s needed most.

My main reason to write is to say I'm so glad for the progress Charlie is making, he is a little fighter. I am so glad that you (Rob and Angel) are leaning on each other and are allowing other people to serve you and help out. (by the way your house if beautiful from the pictures). I feel like I know you two from reading all about, well everything. I will continue to keep Charlie and the rest of you in my prayers. Maybe we’ll meet one day.

Feel free to check out our family at petersonfamily15.blogspot.com To see some pictures of Payton there’s a post in September 2007, October 2007, and the one in Feb. 2008 where I mentioned you guys.
And for Rob, my husband was a little jealous about Bronco coming to visit. (Sorry Angel), but Go COOGS!
Jeremy and Amanda Peterson

Roxey said...

wow, thank you for sharing, Amanda. You are such a great example....

Anonymous said...

My daughter called me to tell me to read Amanda's comments. I am really touched by the outpouring of love and sympathy, empathy and caring that is going on as a result of sweet little Charlie. I know all my kids are dropping in on this site at least once a day and they, too, have been inspired and impacted by the love and support that Charlie, Britty, Rob and Angel are getting. It is really wonderful to be able to hear these stories and be inspired by such amazing people all around the United States. It just goes to show how "small a world it really is." I thank you all for being a part of this and for inspiring me and my children and grandchildren with your love.

Thanks, Jill B... and thanks, Nikki, from bringing this to my attention today..
Love you.
Angel and Rob, you will make the right decisions, I think you have been brilliant so far and besides who would ever turn Suzy down? Or who would dare?

Anonymous said...

My dearest girlfriend first child and only son was diagnosed with a heart defect at 21 weeks gestation. Doctors advised that a heart transplant was impossible. An infant with the same blood type and same size of heart would have to be available the instant he was delivered, then he would have to endure and survive the surgery. He passed away at PCMC the day after he was born. Your son being able to give life to another is a miracle in itself. I believe he is one of his father in heavens special soldiers.
Thank you for sharing your beautiful story.

Anonymous said...

I am a 31 year old former cage-fighter sitting at my office bawling my eyes out. Thank you to Charlie and Payton for changing my life and inspiring me. Two very special warriors that have affected and changed people for the better and have inspired more people in the matter of months than I could ever hope to accomplish in my lifetime. Thank You, Thank You