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Monday, February 7, 2011

Monday Morning

Ramsey upgraded to a crib last night! He was getting a bit too long for his bed; he is now 20". Also, we started giving him a pacifier. He really seemed to like it, but it wouldn't stay in unless it was held there.

Ramsey in his new crib


Ramsey was really uncomfortable last night. We attributed it to withdrawal. He just looked so miserable, and he couldn't sleep. He only seemed comforted when the binky was in his mouth. He was given a little sedative to relax him, but even that wasn't helping. Around 4AM, he threw up again. They checked his tubes to make sure they were positioned properly...they thought maybe the one they put in yesterday needed adjusted (The one in his nose, that they put directly into his intestines, hoping to prevent the vomiting). It was still positioned properly. Amidst all of this, they gave him some morphine to relax him. He continued to vomit, and he threw up the tube that was in his mouth. (While the tube was out, they heard his cries for the first time; the tubes had kept him silent until then). They re-intubated him. They have determined that he is suffering from some major reflux. They will start him on Pepcid to treat it, and will continue his feeds once the meds take effect.

Reflux is common with CDH babies, since their intestines need some help to get working. They will start him on a small dose of Pepcid and increase as needed. I hope and pray that it helps him. I hate to see him in pain, and the morphine apparently wasn't much help. If the meds don't help the issue, they would need to insert a G-tube (feeding tube directly into his stomach).

Amidst the feeding setbacks, one plus is that his CO2 was better than it has been in days. This allowed them to lower the vent to 26. I am hoping that he can be extubated soon. He may need steroids in order to beef up his lungs in order to to do so.  The tube in his mouth is affecting his palate, which could affect how well he takes a bottle, as well as cause issues when his teeth come in.

Praying that the reflux can be treated, that he can be extubated soon, and that he rests well today!

6 comments:

  1. Praying for him. Don't be too upset, as you know God has him in his arms. God Will take care of him.

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  2. Finding the right balance of what Ramsey needs will be trial and error for some time. Our Charlie was on the vent for over a month once it was all said and done and had his fair share of puking issues. He had the regular NG tube for well over a month then the NJ tube into his intestines for almost another month, was on a variety of different meds to treat his reflux over the weeks and months (and is still on medication now). One day after weeks and weeks of puking regardless of what we tried and trouble taking the bottle the surgeon said it was time to make plans for a g-tube and that was the day he stopped having problems. Have faith and know that Ramsey will tell you what he needs! Sending prayers for continued progress!

    Much love and prayers,
    Patty D'Angelo
    mom to Charlie, 2/4/09, LCDH survivor

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  3. Is room oxygen still at 17? If so then he is so close to being extubated. Praying that the reflux calms down with some medicine.
    :) Stacy

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  4. Stacy, I think they said it is 18, so yes, we are getting close :)

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  5. Hey there,

    Jax went on this throwing up roller coaster as well and because they were weaning him off of morphine it was hard to tell whether the vomiting was due to withdrawal or reflux. It's a delicate balance eating and weaning meds on these kiddos. Jax was on Zantac from the moment they started feeds until he was 18 months old. Also, I was under the impression room air was 21 or at least that is what I was told at CHOP. Hang in there...

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  6. I be the Pepcid works! My 9 year old had issues from birth with acid reflex. He currently takes 75 mg of Zantac. Helps him immensly with his nervous stomach. Will pray for Ramsey to stop with the vomit issues and be able to get off the vent.
    Paige

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