BENNY

Ben still sleeping this morning after an exhausting night...

Last night was one of those nights that you hope you never have to live through again. It all started when we were finishing up Family Home Evening and trying to get our children into their beds. Steve was helping me with Ben because he is the most time consuming when it comes to bedtime routines. Just to give you an idea, here is a quick run down of our routine with him. First we make his feeding (he eats all his meals through the night) and hook his feeding pump up to his g-tube. Next we mix up his medication for the night. He is on Clonodine (to help him sleep), ditropan (for bladder spasms) and baclofen (for contractures). After meds and feedings are running we hook him up to his pulse oximeter - it's a machine that reads the oxygen levels in his blood and tells us what his heart rate is. This machine has an alarm on it to let us know (while we are sleeping) if his oxygen goes too low or if his heart rate drops too low or rises too high. It's our peace of mind while sleeping. He has a suction machine next to him for the times that he needs to be suctioned. Because of his trach, he doesn't have the ability to humidify the air he breathes in like we d0 via our nose, so we have him hooked up to a "trach collar" that you can see in the picture above. This is connected to a heated humidifier and compressor so that through the night his air is humidified. Lastly we have to catheter him and leave it in all night to drain his urine. This is when the problem happened. As Steve advanced the cathetar through his urethra into his bladder, Ben started bleeding profusely. We immediately took the cath out and noticed that he was still bleeding pretty good. It took about 5 or so minutes for the bleeding to slow to an ooze. We called the ambulance and they came and took him to the local ED. Unfortuanately my youngest daughter Stevie was watching the whole event transpire and was so traumatized by all the blood. Anyway, the night was beyond frustration because on the way to the hospital, the EMT took a poor reading of his blood oxygen (83%) which made everyone go into panic mode at the hospital. They initially ignored our whole reason for being there and spent over an hour trying to get a blood oxygen level. When they finally got one it read 100% - duh! It would seem to me that if you had a patient that was bleeding, you would atleast want to take a blood pressure - they never did. Instead they spent over an hour looking for a foley catheter that would be the correct size. When they finally did find one, they were almost ready to insert it when (thankfully) one of the nurses noticed from the wrapper that it had latex in it - Ben's allergic to latex. Potential disaster averted. So...we waited another hour or so for them to locate a cath that was latex free. Meanwhile Ben's belly became more and more distended. They finally came back telling me they didn't have one and could Steve drive one of our cathetars over to the ED. (Sure, he'll just leave three sleeping children to drive 30 minutes roundtrip to bring you one of our catheters because your hospital isn't suitably equipped to handle my son) Finally Steve arrived and the cathetar was inserted and he drained a lot of blood/urine. They took a culture of the urine and sent us home with a diagnosis of "blood in the urine". (you think???) We didn't get home until after 1am - 5 hours it took them to put 1 catheter in and take a sample of urine. Both of us were exhausted that I decided to wait to call his urologist in the morning. After getting the kids off to school I called the doctors up at Dartmouth. Many phone calls later it was determined that I didn't have to drive Ben all the way up there at this point (thank goodness) because the bleeding has pretty much stopped. According to his doctor - this bleeding episode isn't too unusual for kids that have to be cathed regularly. Sometimes there can be an irritation to the lining and cause that much bleeding - it was pretty alarming for us amatuers. Anyway, the plan is that we have to keep this cath in for 10 whole days so that it will allow enough time for whatever happened to heal and to prevent any clots (which we are still seeing) to block his ability to pee. The nice thing is that he emphasized the fact that Steve did nothing wrong, it just happens. (that will make him feel better) The down side is that whenever we move Ben from room to room or take him anywhere in the car, his bag will go with him. UGH! It will be a long ten days...in the meantime, I've earned a nap, I'm off to go take one.

This picture was taken today around 10am. You can see that his urine still has blood in it. We will continue to monitor it.