Hard Day

Today is the day that we hoped for great news, but unfortunately it's the opposite. We think somethings wrong inside Will: his heart rate is up, white blood cells are up (indicating the infection is still alive and strong).  Of course we are very worried. They also think the NG tube hasn't been working right. They are starting him on 3 new antibiotics, were extremely worried about the other part of his bowels being compromised. 

 

Danny:

Today has been very tough. William's condition didn't improve, indeed things don't seem to be going well. He has been in some pain, his heart rate is up, his tummy is distended again...a lot of the same things that happened before he went into surgery. The x-ray showed a lot of air in his stomach, so they've been trying to decompress him. 

For me, one of the toughest parts of the day was assisting the nurses when they changed his ostomy bag. Not only is it a terrible sight to your baby's insides on the outside, but they had to clean around the opening and it hurt him. Then they had to take out his NG tube, that runs into his stomach, and reinsert it. Although not necessarily dangerous, it was horrendous to watch him wince and writhe as I held him down and they shoved the length of the tube all the way down his nose into his body. Another really sad thing is that when he screams and cries he is completely silent due to the ventilator. Of course words don't do any of this justice of course compared to the feelings of panic and sadness we feel.

They started three new antibiotics, I'm not sure why other than he hasn't turned a corner in terms of improvement. He hasn't been extirpated yet and is still on dialysis. We've been worried about the infection causing more damage to his internal organs. When our nurse asked the surgeons to come take a look at Will's stoma, they said it looked good. I took the chance to ask them when we might know how the other portion of his lower intestine is doing, they said in a few days (Friday or Sat.?) they will do another CT scan which will give them a good idea how things are going inside.

For me, today has been really difficult. Watching Will suffer combined with the fact that I was listening to the wrong voice in my mind which was telling me to think about all the things I've done, or didn't do, which might have caused this or helped avoid it has made for a tough day. Thanks to Sarah and our nurse Tara, I let go of that thought, but these are the kinds of things that begin to happen when you're in the "gal of bitterness."

How much longer can this go on? How much more can William take? How much more can we take? Apparently HUS patients can be hospitalized for months and months.

It's impossible to express how we feel. Anyone who has gone through something similar to his knows the ups and downs of the emotional spectrum that are experienced. I thought I knew suffering and sadness, but watching my innocent son lying in bed confused and in pain is unimaginably difficult. I feel so blessed to know that this life is but a brief sojourn, that we are so much more than these bodies and that our pains and that our sufferings are for but a short season. In all of this there is still good, there is a reason for all things and while we simply cannot see clearly right now, someday we will. 

So many are doing so much to help ease our pain, but we hope everyone knows that all we really need is your love.

-Daniel