Sunday, August 23, 2009

No Improvement

Jimmie has not eaten much to speak of today by mouth. He's been puking after every meal. Rachael is VERY discouraged. She feels like nothing they are doing is working and that they could be struggling like this at home. She talked to the Dr. about leaving tomorrow. She would learn how to use the pump and Jimmie would go home with the tube. They may end up leaving. However if someone on the medical staff has any ideas to do something different for Jimmie Rachael may decide to stay.

We are interested to try oxygen, enzymes, go back to mostly breast milk or try an amino based formula in case he has allergies. If the hospital is willing to experiment with these things . . . they may stay.

The continuous feed at night is making Jimmie miserable. Rachael feels it never gives his tummy a break. The Dr. feels perhaps he should be tolerating it better and suggested that Jimmie drink a radio active isotope so they could do a lower GI to see if Jimmie has a problem with his peristalsis (the way his food moves out of his stomach and through his lower bowel). If he did have slow or weak peristalsis they would do more Erythromycin. That's not a good option. They actually took him off of that today because they are very suspicious that it is causing him a lot of tummy pain. The other thing they would do was Reglan which now comes with a HUGE warning about how it can cause neurological damage. So that drug is not an option to us. So Rachael refused the test because even if it did show some small problems she wouldn't use either drug for it.

She asked the Dr. to talk her into it if they felt it was really necessary. The Dr. said she understood Rachael's reasoning and she would let that test go for now.

So I don't know if they will stay at the hospital or go. I don't know where they will go from here with his treatment.

Please keep praying. Rachael is so exhausted she can hardly think straight. I am feeling really really badly for Justin, Rachael and Jimmie right now.



  1. that sucks. i can't even begin to imagine how frustrating this is for all of them. i will pray that God give the doctors wisdom about what step to take next, and that SOMETHING can be done to help Jimmie feel better. I am sure they don't just want to "wait till he grows out of it!" jason and i will be praying for all of you! we love you and are sorry that you are having to go through this.

  2. Lots of prayers from a long-time lurker, first time poster. My DD was born IUGR and had severe reflux for most of her first year. She is still on meds for it. Apologies if this has been mentioned and discounted before, but has domperidone been considered? Like the erythromycin it is a pro-kinetic, but as far as I know it is less likely to cause stomach cramps. In addition to domperidone, we used a simple feed thickener added to DD's breastmilk (over here in the UK it is branded Infant Gaviscon). It must be immensely frustrating for Rachel and Justin to feel like nothing is changing - I can understand that the doctors just want to give some time to see whether changes to the drug regimen etc. work one variable at a time but it can be torture when you see your little one. So prayers for God's grace for Rachel and Justin and the rest of your family, God's wisdom for Jimmie's medical team and lots of peristaltic prayers for Jimmie.
    Liz, United Kingdom x x

  3. Been thinking about and praying for you guys. Hope some answers will come soon.

    Take care,

  4. We're praying for everybody!! There are so many prayers being lifted up on Jimmie's behalf from so many people.

    "...pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much." -James 5:16

    We're still praying for a complete healing!!

    Lots and lots of love,
    Adrian and Janelle

  5. "Be of good courage." The Lord has been there every step of the way and He will continue to be with you. May you feel His presence and be guided by Him. We love you dearly and are still praying for all of you.
    Amber, thanks for continually updating the blog for us.

  6. Amber,

    I cry sometimes when I read your posts. I am in love with Jimmie. I have directed many people to your blog. I know that prayer works, even if we don't have answers. Our church has Jimmie in their hands, so many people praying.

    Andrea, thanks for giving them strength. You are an awesome mom, and grandmother. Jay. I can only hold him up in prayer.


  7. SO HARD. My son was born full-term, but had a TERRIBLE digestive system. I was so frustrated so much of the time. No one knew how to help. I know this is totally different, but I'm just relating.

    What a trooper Jimmie is!

    Prayers for peace to each of you,

  8. Prayers for a FAST, COMPLETE recovery. My son also had reflux his first year and breast milk was always better for him.
    Prayers for Jimmie, Justin and Rachael. PEACE to all of you.

  9. I am so very sorry for all of you, I really had hoped this was the best thing to do for Jimmie. I hate to see him go home with this same problem. I can't believe no one can is ridiculous!! Rachael PLEASE get some rest or you will be in the hospital next...Justin you too take care of your self's!

    Kathy Barnes

  10. Praying for little Jimmie!! I hope they find a feeding system that works :( Also praying for Rachel. *hugs*