less than a week to go…

In less than one week this perfect little tummy will be changed.  I still cannot get over it…that I have a baby that needs assistance with a basic life function. I can’t stop staring at his naked little belly and forcing back tears…even though I know that this is the right decision.

Yesterday we headed back down to Baltimore to have another GI consult and a regular checkup with his genetics doctor.

Everything looks good. Ammonia was 44. I guessed 32. Wrong again!

Corrigan grew and inch but did not gain the expected amount since his last visit. Again.  He has been slowly slipping out of the 90th percentile for awhile but little Tank is leaning out…even the needle that they use to access his port has to be changed because his baby “boobies” are disappearing.  A long time ago our local hospital special ordered 1/2 inch needles for his port. A giant box of them specifically in stock for Corrigan…and then he went and got chunky and they had to use the regular 3/4 inch ones. Now, those 1/2 inchers are going to be useful again!

I don’t know, looking at the above photos I am still seeing a beautiful pudgy boy, with lots of “extra” on-board in case he gets sick. I know that the team likes him to have that “extra” and because his diet is higher in calories and fat than most kids that little tummy is a good thing (wish I could say the same for my “little” tummy. ha!)

His g-tube surgery is next Monday, May 3rd at a yet undetermined time.  Originally, we were going to waltz over from Children’s House around 6am for pre-op stuff but now the team has informed me that they want Corrigan to be admitted the night before surgery to make sure that he is properly hydrated and that his meds are flowing well through his port.  The GI Team does not want him to take a single thing, by mouth, for at least 8 hours prior to the procedure but Corrigan has to take his meds by mouth and he HAS to have fluids to whisk out the byproducts of the Urea Cycle.  *sigh* I cannot fathom how I will be able to keep this very active toddler happy, in the hospital, for four nights. In fact, it stresses me out so much that when I do allow myself to think about it I have a hard time breathing…so who wants to talk about unicorns and rainbows?

Anyone?

I know that some people are having a hard time understanding why we are taking a chubby, perfectly healthy looking boy and puncturing his tummy with a tube and I had planned on typing out a really long (*yawn*) informative post about the reasons that we are going this direction with Corrigan’s journey but the more I think about it…the more I am far to exhausted to explain myself and really, why should I?

If this were just my idea and it was not a good one, his team at John’s Hopkins would laugh me out of the building. They are not real big on unnecessary procedures…especially if they are just for a tired Mama’s benefit.  When the doctor knew I was serious (and ready) she had the entire thing scheduled in, like, .751834 seconds.  I think that she is happy about this. I mean, she did tell us, ominously, last February that we should go ahead and have the g-tube done when his port was implanted but we said he didn’t need it…yet. Her words, “Oh trust me, he will.”

Pffft…what? You think you know everything? Oh wait, you were right? Oh, my bad. sorry.

Suffice it to say that we feel that this is something that will enhance Corrigan’s life, who knows…it might prolong it for all that we know. All I know is that I have a toddler that is like every other toddler under the sun. He only likes about 3 kinds of food, eats randomly and, left to his own devices, could go days without a single bite of anything except candy. Or sweet tea. If only sweet tea had optimal nutrition! ha.

Corrigan has to eat. He has to eat and drink consistently and precisely.  At this point in his life he is more interested in the tactile science of dog hair and how quickly he can climb out of the window than the very important 109 grams of banana that Mommy is begging him to eat.

There is a lot more to it than that…but basically it comes down to the fact that he is not a good eater/drinker and it is detrimental to his health. Very seriously detrimental…and a tube in his tummy is going to free him up to wiggle under the porch rails and race his little red jammied butt down the driveway towards the backyard and the trampoline ( not that that has ever happened, nope…ignore those scrapes on the side of his face, nothing to see here) unchaperoned.

Corrigan has a very life to live…a long one dag nabbit!…and it is our job to do the things that, while they may make us sad and scared,  will allow him to do that.

Now we just have to find lots of one-piece outfits in size 2-3T so that he will not yank out his tube and use it to rappel off of the back porch towards freedom.  Seriously, does anyone else have a child that acts like escaping from the house is like an Alcatraz movie? Sheesh, who made the backyard so darn appealing?


11 thoughts on “less than a week to go…

  1. –as for the “toddler in the hospital” dilemma….been there!!! 😦 ask for a play mat from child life!! that way they can be on the floor and play with toys and not get all gross! sophie and i sat on the playmat everyday when she was in last july for a week.
    — about the “onepiece outfits for toddlers”….when sophie got her surgery (at wvu) they gave me these “mesh-like” things that you can slide down over their head and around their tummy and back..kind of like a mini-mesh-tube top. that way she wouldnt pull at the catheter that was in place before the button. i know this is hard, and the kids have different circumstances but it was one of the best (definatley not the easiest) decision that i made for sophies over all health!!! please call me if you have any question! or need anything!! i have replaced so many popped out catheters and mickey buttons, etc. etc. its like second nature now! i even had sophie almost choke herself with her feeding tube one night…so if corrigan is a “mover” in his bed and you have to do it overnight..i have tips for that too! 🙂

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    • Thank you Jessica, it would be a wonderful relief to know that more are praying!

      Ricki, I will be utilizing your knowledge for sure. I am scared, worried, anxious and excited all at once. I am excited for the new life he will have and the freedom to get out from the beanbag/bottle drinking for hours and have adventures and experiences….but you know the reasons I am scared too. *sigh* It isnt easy, is it? We shouldnt need to night feed with pump unless he is sick and need to keep him hydrated but they are teaching us the pump and sending us home with it and the little backpack thingy too. We are going to gravity feed most of the time though. Thank you guys again…I need your prayers prob. more than anyone because I am a mess!

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  2. I understand how you feel with the begging your child to eat bit. Two different diseases with many similarities. G tubes are often utilized in CF and the nutritionist keeps reassuring us that it is not a threat but just another tool in the box to fight the disease. Many parents are so extremely happy with their decision to place a G tube. Your little guy is going to do great!! Prayers are with you.

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    • Thanks Christina, you are so right, our boys are so similar despite their medical differences. Ugh it just kills me that we are all part of this “family” in the first place…Nathan and Corrigan and Sophie and Lynlee…we fight so hard for our babies and experience so much joy and sadness at the same time. It is a hard path, isn’t it? Sometimes.

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  3. I knew you were going to go this way. I am sorry it was such a hard decision to make. I do agree that it is a tool in your arsenal and the more of those the better. Good luck to all of you. I cannot imagine the trial that awaits you but you are prayed for and loved. Daily. xoxox

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  4. I just ran across your blog. I have a 2-year old little boy as well and when I saw the adorable picture of your son and your comment about looking at his little tummy emotion hit me like a wave. I can’t imagine the horrible feeling of knowing you have to inflict any pain (if to even cause good in the future) on your child.

    I will be thinking about your family and hope that your hospital stay goes well and your little man stays comfortable and entertained while a patient. Pediatric wards are SWAMPED with toys and games, don’t be shy about asking for a new one when he needs something.

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  5. Okay, so I think I might use this blog post to forward to our family and friends because you did a great job of explaining … Thanks for the support and information. If I could have hugged you over the phone last night, I would have 🙂

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  6. Pingback: A boy, a ball and a backpack. (a g-tube update of sorts) | Mooney=MC2

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