Friday, August 24, 2007

Blessings come in all shapes and sizes...

...and sometimes they even come disguised as setbacks, mistakes and bad news. As parents we have learned to wait and see, holding on to God's promises for John and us and enjoying each moment that we have be it at home or hospital.

The latest setback has been the PICC line, despite having had one in the past they were unable to place one this time. No fault of docs, just that John's little veins said 'enough' and clenched down and would not let them place the catheter. A nutritional set back to be sure as everyone was on board to start running TPN immediately, which would have given John some much needed calories and nutrients. But as in all things God works in ways that are mysterious and little understood by man and here we see yet again His hand at work.

Since there is no PICC line placed and John is such a difficult kid to get an IV in it seemed rather tragic when his little foot IV went bad, our favorite IV nurse wasn't on shift, and yet again miracles for John, the new IV nurse came in and with one stick we have a good IV that is so far holding up well. But since it is a peripheral IV and TPN is very hard on those they aren't giving him the TPN right now and are trying to use his gut to get him the calories and nutrition needed. This is going so so.

Actually it's going about as good as it did at home and the poor docs are running themselves and the nurses crazy changing the concentration of his formula and such every 4 hours trying to keep him balanced. Right now he is getting an IV bolus to catch up again, but all in all John is faring pretty well during all of this and spending a large amount of his time wandering the halls and touching peoples hearts. It's always amazing to me, with all the patients that the docs and nurses care for, that John is so well loved and remembered by nearly all who have spent time with him.

So far, this isn't sounding like such good news, we are in here indefinitely until John is able to tolerate feeds that can sustain him and let him grow, we are no where near that goal, actually at this moment that particular goal is not even glimmering on the horizon. But as with all things that are in God's hands here comes the good news, this has led the docs here to speak with the GI doc here and those in St. Louis and to recommend that we seek a 2nd opinion and maybe even a transfer to the Intestinal Rehab center in Omaha, Nebraska. We will be talking to those people on Monday and seeing what they have to say, but reading through their literature John is definitely a candidate for their program.

Meeting the GI doc here in Columbia, was a blessing in many ways, not the least of which is this recommendation for Omaha, but also heartening news of a little boy with half the amount of short-bowel that John has that is doing well thanks to the expertise of the Omaha treatment center. Actually this doc is thinking that John is a good candidate for two different types of bowel lengthining surgeries and holds out great hope for his future. No matter how much hope we hold ourselves it is always nice to hear that the medical professionals are hopeful too.

That brings me to the next thing that I wanted to say. I know that there are staff from Children's St. Louis that read this blog, and I want to say to them thank you, the docs and nurses and staff from SLCH are the first medical people that we talked to who held out hope for our little guy, who told us things like 'there is no reason he shouldn't make it into hood' and they have been supportive, kind, caring and knowledgable professionals to the nth degree, an invaluable resource in getting as far as we have. Going to Omaha for this 2nd opinion and possibly for treatment in no way shines a negative light on any of the medical professionals that we know and love, just sometimes it's time to take a further step, and this seems like the right time and the right step to take.

We have been teasing John that he will now get movie contracts as he is going to be going into Rehab, lol, I don't know that it works the same way for Intestinal Rehab as it does for rehab, but oh well. All in all we are all holding up well, learning to live in the hospital again is a bit of a stretch, but we're managing to do it and still have fun and play and such through the day, and I'm sure that in the end John will be glad to get back home but will be looking for where all the cool places to walk went too and all the cool grown ups to play with!

Thanks again for your prayers, they are much needed as we make big decisions on where to go and what to do for John, always we are motivated to do what is the very best for him, and thankful that God has given us so many excellent medical professionals to show us the options and reasons and ways to go. Please continue to pray for us, and for them, lol, they have a big job to do putting up with us 24/7.

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