Wednesday, April 9, 2008

Wed. Update

I'm sorry for the late post but I have been holding Coop since the Dr's assessed him at 7.

Charlie had to have his feeds turned off 3 times last night due to not emptying his stomach. Dr. Such-Neibar came in today to give me the plan. We are going to place another NJ tube (a tube from his nose to his intestines that bypasses the stomach-what he originally started out with in the PICU). We will leave the g-tube in place and start feeding though the NJ to see if it makes any difference. If he tolerates it well, then we know the stomach is the problem (reflux or not empying) and we could convert the g-tube (directly into his stomach) to go to a GJ- tube (a tube that would go from the stomach to the intestines). If bypassing his stomach doesn't make a difference then we have bigger problems (like the intestines may not be working right).

I have a theory on this whole gut issue but I haven't verified it with the doc's so I may be dreaming but here it is. We were explained the "storming" as a automatic fight/flight response (like when you encounter a very stressful situation-adrenaline release) where your heart rate, blood pressure and breathing all increase, you sweat to cool the body to prepare for flight, and your body stops digesting. We have been thinking that Charlie gets mad/agitated because he his food is not digesting and is full but I'm wondering if it is the other way around and he is not digesting because he is mad/agitiated (storming). It probably doesn't matter either way because it still isn't digesting but they say that the storms will go away eventually so if this is right the stomach problems should go away too.


Anonymous said...

Makes sense to me, Angel. You are a great intuitive mom and Charlie is lucky to have such wonderful parents!

Ginny said...

Makes sense to me. I think you should get some honorary letters after your name for all you do and have learned!!

Tammy said...

I agree with you. I have been there done that with the stomach thing. Good Luck and I think this is a good thing for Charlie. We had the GJ for almost a year and we did great on it. It worked great for us. At least you get to visit Darin! Tell him HI from the Gales.

Hang in there.

Anonymous said...

A mutual friend of mine told me about your blog, and I have been following along to see how Charlie and the rest of your family are doing. Although he has had setbacks, I am happy to see he is continuing with his 'Charlie steps,' and I have a developed tremendous admiration for you and your family as you continue on this journey.

I had two thoughts that may be worth batting around. First, if Charlie is storming due to a fully belly, I worry that he may also find an NJ tube irritating or annoying (I needed one once after a major round of surgery and tolerated it, but did not enjoy it.)

Instead of trying an NJ tube, the docs may want to consider exchanging his G tube for a G/J tube. This is a double-lumen tube, with one tube ending in his stomach, and the other in his jejunum. Switching to a G/J is a straight-forward procedure, and would avoid the possibility of Charlie being aggravated by an NJ tube.

Second, from what I've read Charlie receives some of his meds thru his G tube. However, he's had so many large residuals, how can the docs know for certain exactly what medications are actually being absorbed? If Charlie still has a PICC line or stable IV, switching his meds over to the IV route temporarily will at least ensure that he is receiving the meds he needs to receive. I know that's a step back, but it might help clarify whether or not Charlie is getting the full benefit of his meds.

I hope my thoughts are of some use to you. Thank you for sharing Charlie's journey with all of us. He -- and the rest of your family -- have certainly become an inspiration for me, and probably for many, many others whom you will never know. Take care.

Roxey said...

When will they put in the NJ tube? Does this push back the homecoming? How is the new holding position working out? Lots of question, and much love and prayers

The Woolstenhulme Family said...

Mom's always know best. Hang in there Charlie. You are fighting like a super hero. I am so amazed at your ongoing strength. I hope the rest of the day goes better and you have a great night. Love & Prayers from the Woolstenhulmes

The Woolstenhulme Family said...
This comment has been removed by the author.
whitney said...

It's always interesting to me to hear all the theories that people share with you. Ang, listen to your intuition, Mom's have it for a reason. I hope you have lots of happy holding hours today.


hi - i came across your blog in a very round about sort of way. wont go into it. but just wanted to say your in my prayers. i read and read for a while and never did get to the beginning of the story and what charlie's actual condition is. i would be curious to know. i have an angel child as well, she has spina bifida and also was 13 weeks early. she will be 5 on april 28th. she has had 11 sugeries and needless to say we frequent PCMC! we have had a good break latley though. we are gearing up for a difficult fall filled with a series of surgeries to correct bladder & bowell deformities. anyhow enough of that your in my prayers and i sort of understand. wish i could give you a hug!

Roxey said...

I just wanted to check in before bed. I hope the NJ placement went well. I just love you guys so much and couldn't admire you more.
Praying for a peaceful night.

linds said...

angel, you amaze me. we are blessed with these little people to care for and as mothers its up to us to do what is best for them. you know what is best for charlie. we are praying for a restful night.