kidkennelly philip: 2018

Wednesday, August 1, 2018

“This is the Worst!”

I get the feeling sometimes that there’s some force out there that sees me get comfortable in our quietness and good health and says No, No, No, wait a minute. Check yourself. Don’t you be thinking you can get all comfortable in your new normalness.
This summer has been full of swim lessons, Family festivals, friends houses and we were loving it!
Yesterday, we headed out to our first LI Duck’s game but Philip started getting bad stomach pains while there and I decided to take him home. He definitely didn’t look good and he could barely walk upright. So I took him to PM pediatrics thinking maybe it was just gas and they referred us to go to the ER. So I called his team and they agreed, so off we went to Cohen’s because it is closer than Mt. Sinai. He vomited once we got there and they took some X-rays and labs and were concerned he had another bowel obstruction. So they inserted the NG tube again in hopes it would relieve some pressure and possibly fix the obstruction. Philip looked at me and said “This is the worst ever!” With tears running down his face. Heart. Broken. This shit just does not get any easier. I had let myself slip Into some fantasy that maybe since it had been a year since he was hospitalized that maybe we could go years without any. Maybe it can still happen but I have to be more realistic in my thinking. This is going to be a life long battle. Transplant is not a cure. It trades one set of issues for another.
They also wanted to transfer us to Mt. Sinai. So deja-vu almost exactly a year apart, me and Philip took a ride in the ambulette to Mt. Sinai. They did some more x rays but slowly Philip started feeling better and no more belly pains. The thought is that it could have been a partial block and the NG tube relieved the pressure and it was able to fix itself or it could have been just a virus. I am not convinced it was a virus because of how much pain he was in and how he looked. So we are Inpatient now for observation and hopefully they will let him start drinking and eating soon. He is not happy at all with the NG tube and wants it out NOW!! Please pray he stays well and we can come home soon!

Thursday, May 10, 2018

2 Years

Today is Philip and Dan's 2 year Liversary! I can't believe its been 2 years already.
And I can hardly believe it's been almost 6 months since my last post. And that's basically because life's been pretty quiet on the health front for Philip. Actually, Things have been pretty great. Its been 9 months since Philip has had a hospital visit; the longest stretch since he was born. It's pretty incredible. I'm getting used to being able to watch him at home instead of running to the hospital. I am waiting for the day when I will feel like I can completely relax and just worry about regular kid illnesses with him. But the truth is, I'm pretty sure it may never come and I'm ok with that. I still catch myself checking his eyes everyday to see if their yellow. Or if maybe his skin looks yellow. I'm afraid I might get complacent in this new life and miss the signs of rejection or something else. Health wise, His labs have been great the last 6 months. Unfortunately because he's been on antibiotics so many times, he recently had a bout of C-DIFF that resolved quickly. I hope that never comes back but he is more susceptible because he has been on antibiotics so many times.
We are enjoying expanding Philip's world and taking him more and more places. He's experienced so much the last 2 years that I always wonder if he would have been able to if he didn't have transplant. How sick would he have gotten? I shake that thought off often. I thank God everyday for living donation and Dan for giving Philips such a precious gift. And I continue to thank family and friends who continue to offer prayers and all kinds of support, 2 years later.
Here are some of Philips adventures over the last 6 months. He is such a fun kid. He has a great personality and just loves living life to the fullest!