Dear Doctor.

We would never have gone to Chester County hosptial had the situation not been life threatening. As it was we tried to have him transferred to CHOP once he was stable, but as he was still critical it was not possible to do so safely, so we had no choice but to have the surgery there. After my "issues" surrounding my broken hip we had sworn that no one in our family would ever go there again. However, when your son is bleeding to death and the hospital is 4 minutes away? It seems like a beautiful choice. And I will say, we had a great experience, right up until the very end.

On Tuesday morning one of the EMT's from the night before showed up in our room while a couple of my girlfriends were there and Jake was in a morphine induced sleep. She said "I'm not supposed to be in here, but I begged the nurse to let me in. I couldn't sleep last night. I have to tell you that I'm a Mom and I've been an EMT for 5 years. That was the worst call I have ever been on. Walking into your kitchen was the most frightening scene I've ever witnessed and I couldn't sleep all night worrying about your son. After seeing all that blood I just couldn't believe that he could live, and I had to see him and you today. I'm so thrilled and relieved to hear everything will be okay". Which of course made me cry all over again. Right after that the surgeon called and told me that Jake's hemoglobin draw from that morning revealed his hemoglobin count to be at 7.4 normally they transfuse adults below 9, and children below 8. But because Jake was currently stable and they had successfully STOPPED the bleed, they felt okay with not giving him a transfusion. That was also when he told me that based on those numbers he estimated that he lost half of his blood volume in the night before. Again, tears. Anyway. Based on that I guess I assumed that they would continue to monitor his hemoglobin with continued blood checks. I also assumed, with the way that the morphine was working SO WELL to offer him sleep (good for building blood) and pain relief (which was the only way the child would eat or drink ~ critical for both not having another bleed, AND rebuilding his brutally diminished blood levels).

So imagine my surprise when some ENT who I've never seen before walks in at 7:30 AM on Wed morning, wakes us up as we sleep in the crib, and declares Jake ready for discharge.  I said "Hey say what? Without more blood tests? He was at 7.4 24 hours ago and you want to release him?"

And it he says "Yep he's good to go just keep him eating and drinking!" And I say....."well what are we going to give him to keep him eating and drinking to make sure he doesn't almost die and stuff again? I don't really want to leave, this is the first time in 10 days he has really eaten or drank and its because you are effectively managing his pain ~ it was the not eating and drinking that landed us here with a nearly dead baby.....I'm terrified of it happening again."

And he says "TYLENOL!"

And I says "Well, the only way he is eating and drinking is with the morphine!"

And he says "He's not on morphine!!" and laughs. LAUGHS!!! I'm laying in a freaking crib with my baby and this doctor is laughing at me. I get UP. Displeased. I hate, hate being talked down to.

I ask the nurse when the last time Jake had morphine was. She says 4:30 am. I ask her when the first time her had morphine was. She says Monday night at 1:30. I asked her the frequency in between. She said, to the Dr, and I, every three hours.

I told the Dr to please leave the room as he just tried to discharge a patient who he had obviously not even taken the time to look at the chart of and I didn't have anything further to say to him at this time.

I took the above video as it was at about the end of Jake's 3 hour stint before he was due for pain relief. This is exactly what he was like on tylenol ~ it simply didn't do enough to cover the sort of pain that he was in. You tell me, would you feel comfortable going home with a baby in extreme pain, who would NOT eat when in pain, with super low blood counts, and no effective pain relief?