Thursday, August 20, 2009

Eating, Tube Trauma, Names

Today has been encouraging! Jimmie has 3 times taken over 70mls by mouth! Please Lord- let this continue.

He has had a bad time with his feeding tube though, poor little guy. They put his morning dose of Prevacid in his tube and it clogged it up. They tried to unclog it by putting a little Coke in there! WHAT?? I know . . . I guess Coke eats through substances. That didn't work so they ended up having to take his tube out.

Putting that tube in is always very traumatic for Jimmie. It puts him in to hysterics. Jimmie is so brave so you know when he is hysterical that he's REALLY upset. The feeding tube going in his nose was most likely *one* of the contributing factors to his "crash and bleed" in the NICU when he was just over a month old. That has definitely crossed our minds more than once. Rachael advised them not to even try in his right nostril because of previous experience with that side in the NICU.

Today as they prepared to put it back in after they unclogged it Rachael said, "Alright lets try the right side to give his left side a break, but if you feel any resistance at all stop". They did feel resistance so they stopped pulled it back out and put it into his left side. The first time it didn't go in properly and came out of his mouth. Suffice it to say- not good times for our little "Jimmie Jim Jim" (that's what my mom calls him.) Sadly this afternoon he puked and the tube came up and out of his mouth so they had to take it out again! They are holding off putting it back because he ate so well at his last feeding he didn't have to be supplemented. They may have to torture him again before bed though if the Doctor wants him to stay on that continuous feed tonight.

All that to say- please keep praying he eats well. We would hate for the trials of his feeding tube to continue at home. To put it bluntly, that would SUCK!

The doctor did say that if Jimmie starts showing that he can increase his volume they will keep him in the hospital longer to make sure he can indeed go home without the tube. If he is inconsistent and doesn't do well taking enough by mouth they will send him home maybe in a couple of days with the NG tube. So as weird as it sounds pray that he'll be in the hospital longer proving he can eat enough.

But also continue to pray for his protection from anything infectious he may come into contact with at the hospital. It doesn't do your heart good to hear "the kid down the hall with Pertussis" come out of a nurses mouth. There are only a few kids being taken care of on Jimmie's floor and I've seen "contact precaution" signs on two doors. It is so not cool that Jimmie has to hang out in a place for sick kids when he is perfectly healthy.

So Jimmie has a few nicknames. As I said my mom calls him "Jimmie Jim Jim" inspired by Muppet Treasure Island I think. My brother- Jimmie's uncle Evan calls him "Little Reflux". 0-: Rachael calls him "Booba". I call him "Little Man" . . . And technically "Jimmie" is a nickname as his legal name is "James".

Speaking of which Rachael and Justin are *almost* regretting that scenario. The whole- his name is "James", but call him "Jimmie" thing. In the NICU after he was born Rachael and Justin introduced him to the NICU as "Jimmie". But then they filled out his insurance forms as "James". The NICU then submited their portion of his paper work as "Jimmie". And the confusion ensued. For a while their insurance company thought Rachael and Justin had twins- "James" and "Jimmie". They were trying to pay for 2 babies among other things. After many phone calls Rach and Justin thought it was sorted out until the Children's Mercy Financial Department called and said "James's" insurance was inactive! WHAT??? So Justin calls and the insurance company says make sure you are giving them Rachael's number plus -03. Justin's 01 Rachael is 02 and James is 03. Makes sense- so Rach looked at Jimmie's card and realized it has 04 on it, as if he's their 2nd insured child!!! So they'll be getting a new card for Jimmie under James with an 03 and hopefully this will be sorted out once and for all. Although we are not holding our breath because when they first arrived at Children's Dr. S. had pre-admitted them. Admissions said, "Um-- we don't have a James Gravitt." So Rach said, "Oh you have Jimmie Gravitt?" They said, "Nope, but we have a "JAMIE Gravitt." Oh FOR CRYING OUT LOUD! And laughing out loud if you have a sense of humor.

Go Jimmie go!!!

Thank you for your prayers! Keep them coming!

Love,
Amber

6 comments:

  1. oh geez!!! insurance companies are so stupid sometimes! hopefully the eating well continues! have they ANY idea why his food seems to be moving too slowly through his tummy yet? i will pray that he doesn't have to go home on the tube and that the docs don't have to torture him! we will keep the prayers coming!!!

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  2. Insurance companies are the bane of my existence. Katharine got listed by her nickname Kassie because some idiot doing the paperwork wouldn't read. It took over a year to straighten it out.

    As for food not moving through Jimmie's tummy, that happens to a lot of diabetics, too. Reglan, which has now been proven to cause some very specific problems, used to be given to "stimulate the stomach muscles to move food". But I am sure that there are older drugs with fewer potential side effects. Just thought.

    I also wonder if massaging his tummy after feeds would help...

    More prayers coming.

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  3. I will pray that Jimmie doesn't have to go home with that insufrable tube! Hope Jimmie's name get's straightened out, too! (:

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  4. Amber, I know this is almost as hard on you and your wonderful parents as it is on Rachael and Justin and Jimmie. But your ability to remain upbeat gies pause for great hope. Your faith is inspiring. And your knowledge, and Rachael's and your parents' about what is going on is profound. Jimmie made it this far becaause of the incredible faith so many have shown by praying and posting, and because his mom is simply incredible and charted so much that would enable the doctors to do a much better job of trying to help him heal and help him to thrive.

    You are all miracles too, not just Jimmie.

    And in keeping this blog, you are sharing your faith with many. Blessings to you!

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  5. Ha ha.... Jimmie-James-Jamie... this IS kinda funny....

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  6. I wonder if they have Cigna. Same scenario with our son "Chasen" whose first name is John. They are ridiculous. Miss seeing you all! chrystal

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