So we were home from the hospital full of optimism, prescription meds and lots of 'you'll be fine' assurances. Thaniel was a on a pretty strict regimen of rest, meds, rest, meds, sleep, meds, rest . . . you get the idea!
At this point Nathaniel could still not put weight on any of his joints and the Prednisone was making him giddy, hungry and cranky. I spent a lot of my time distracting him, feeding him and carrying him about. We had been home just 3-4 days when one night as I was tucking him into bed and noticed he felt quite warm. 'Don't worry about (from the sage husband) his body is just fighting this thing.' Little did we know the fight was far from over!
The next morning I got Hannah off to school and carried the boy down to the couch as had been our pattern for the past few days. He was hungry but almost immediately after eating brought everything right back up. Now being from the school of 'non-panicking' parenting I carried him back upstairs cleaned him up and put him in the bathroom. He vomited a few more times and I could see he was thoroughly wiped out. I tucked him into bed and re-viewed the HSP information. Call the doctor it warned. So I put in a call to Kaiser.
The advise nurse had NO IDEA what HSP was. And since a majority of the kids who have it manage to escape complications - she really had no idea how to help. "Its on the list of 'call the doctor for advise immediately' symptoms", I re-explained. She promised to send a message to our doctor and marked it urgent. I called Eric and told him "I dont like this - I don't feel good about this at all. Come home".
About this time I heard a feeble 'Mom!?' from upstairs. I went back to check on the boy-child and he was vomiting again. "I need the bathroom 'he told me, pale and shaky. A'nd Mom - I really messed the bed". "Not to worry" I replied, thinking he meant the vomit. I gathered him up and carried him to the bathroom - where I placed one end on the toilet and gave the other end a big bowl. He was now 'emitting' from both ends. It was violent and scary. Poor baby! Not wanting to stand there and watch I headed back to his bedroom to clean up the mess.
And here is where is went downhill very quickly. I pulled back the blanket on his bed to find his sheets soaked in blood. I ran back to check on him and his violent diarrhoea was blood!
I dialed the doctors office again - 'PLEASE HELP - I really, really need the doctor to call me back right now - I am scared'. About this time Eric came home so up stairs I went again. Thaniel was in a LOT of pain, complaining about his 'tummy' and begging to be allowed back into bed.
About then, the doctor's office finally called (2 full hours after my initial call). "Mrs. Toner? This is Dr. M's nurse - she told me to call you and tell you exactly this - hang up the phone, dial 911 and ask them to take him to Dorenbecher. It sounds like a bowel intussusception and it can be fatal." THAT IS WHAT I WAITED TWO HOURS TO HEAR!!!???
Eric took the phone from me and dialed 911. He quickly explained the situation and our doctors instructions. They refused to take us to Dorenbecher. 'You live a mile from SWMC, we can take you there if you like' - they told him. Forget that! Eric hung up. We wrapped Thaniel up in a blanket, grabbed a bowl and raced him up the street to SWMC.
The staff very quickly assessed him and the doctor let us know that if he needed emergency surgery he should be a Dorenbecher (grrrr) He ordered the ambulance, and they got an IV started. It was challenging because with the HSP all his blood vessels were breaking down and he bled out quite a bit just trying to get the line in. The doctors and nurses were quick efficient and calm. They also made no bones about how serious the situation was. We were sent via ambulance from SWMC to Dorenbecher at a code 3 (lights and sirens all the way)
Here are some photos of him being loaded up into the ambulance, smiling at the lights and sirens and being unloaded on the other end.