Saturday, September 14, 2013

Here we go!

It's hard to believe it's been nearly 2 years since Preston was born and that we've been inside of this cyclone of emotions.  This last month has been especially challenging with Preston's recent hospitalization for an infections, having the doctors pushing us to make the next step in scheduling the nephrectomy, and still undergoing testing on candidates for living donors.

We are now at ease in knowing that we have a DONOR!!!  After several weeks of testing, labs, scans and many visits with doctors, Preston's Uncle Cody is giving him the ultimate gift.  Words are not enough to express our thankfulness for Cody, the sacrifices that he and his family will have in helping Preston though this bump in the road. We will all be forever thankful.  I've been a blubbering idiot the last few days waiting for the approval from the transplant team.  It's such a hard thing for us to even ask this of anyone, especially when we for so long knew that it would be Tyler or me that would donate our own kidneys to our son.  When we found out that neither of us were a candidate, we felt like we had let Preston down, and that we blew it for our family, although it was purely an anatomy issue that could not be corrected. 

Additionally, I would like to thank all of the generous individuals for stepping forward to be tested to be donor candidates.  The transplant coordinator was very excited that we had a receiving line of individuals that were willing to give this gift for Preston and that this is very rare.  We appreciate each and ever person that has considered this gift, has prayed for our family, that has donated time in raising funds, that has prepared us a meal, sent us a card, paid us a visit.  You're all amazing, and I'm pretty sure that we couldn't have made it this far without everyone's support.

I'm sorry if I've caused you to need a tissue.....Heaven only knows how much tissue I've used.  I should own some stock in P&G for all of the Kleenex this family has used in the last year.  This is all a hugely emotional time.  I feel thankful, scared, excited, frustrated, proud, and every other emotion all wrapped into one big ball of wax.  Another stress-er we've had this last month is with Preston's weight gain, or lack of weight gain.  He's developed a huge aversion to food, but will drink his formula still so we've been pushing to give him enough calories throughout the day, with enough fat and proteins to hopefully help him thrive.  The doctors have warned us that at some point, with his kidneys in place, he will not be able to thrive, and I think we have finally hit that wall.  He can't possibly drink enough calories in a day, and he's not been able to tolerate the high caloric formulas and protein supplements so he's been throwing up his milk.  It's a constant battle to get the calories in him and keep it all down.

So, now that we have a likely donor canidate (still waiting for final approval this week after the transplant team meets), and because we feel it's time and the doctors are pushing us really hard, we've scheduled an OR for 9/24 for Preston's double nephrectomy. At that time he will have a peritoneal dialysis catheter placed in his abdomen and he will undergo about 12-18 hours of daily dialysis.  And we though 4 hours of Albumin 3x a week was hard...  I'm not quite sure how we will manage it all, but we will have extensive training for several weeks inpatient.  At some point, we will be able to come home and perform dialysis at home.

The best part about being the time that P will be on dialysis is that we will hopefully be able to get out and about a little.  During this time he will hopefully have a little recovery in his immune system, so we hope to experience a little more pre-transplant.  I'm not sure how much we'll break out of our little bubble, and I'm sure that we will always live in fear of germs, but I hope that we can maybe have just a little bit of "normal"....whatever that may be.

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