It's been a whirlwind of activity the past 24+ hours, including 3+ hours at Primary Children's ER last night. Short story...Travis fell off the bottom step to the basement and fractured his left tibia (the side with the tumor) just above the ankle on Sunday evening. We're waiting to hear from the docs at Shriners what day they can work him in to their schedule. He will not bear weight on his left leg and not too much on his right. We are carrying him from room to room and he's content to stay stationary. Thank you for all your prayers and support. More details below...
Travis was on the last step at the bottom of the stairs and stepped back to get a picture, not realizing/forgetting that he wasn't on the floor. He fell and started crying like any kid would. Typically he would settle down after 15 minutes or so the times he fell on his tumor. We watched him for a while and grandma gave him a bath. He was still pretty shaken 30+ minutes after the fall and while he was pretty tired, he wouldn't even try to bear weight on his left leg. When we would hold him up and lower him to put his feet on the floor to see if he could walk, he would draw both legs up.
Shortly before 10p, Travis and I headed to the ER at Primary Children's (where he has his MRIs). We got checked in pretty quick and back to a room. With each nurse and doctor that we encountered, I explained how his left thigh and knee is bigger than the right...normal and not a result of his fall. We saw a resident doc around 11p and she ordered the x-rays. Travis tolerated the exam, but didn't want her to touch his left leg too much. She was able to ask him to do some things so she could get a better look without having to touch the sore part of his leg. He would answer "down low" when asked where it hurt and sometimes say on my big leg.
Getting the x-rays was another challenge since he didn't want to be prodded anymore, and rightly so. Unfortunately, to get the picture needed for the radiologist, they had to move his left leg around some. While I wanted to be there to hold his hand, it was easier for the techs to get the picture with mom not right there. (When he has regular x-rays, I'm able to help out...naturally ER x-rays are different.)
Around midnight the resident returned and said that the x-ray didn't show any big things that would require surgery that night. However, due to Travis' medical issues, the radiologist was going over the x-rays in great detail. A little while later (~12:30a) the attending came in and she started to do her exam on Travis. By that time, he was really tired and didn't want her to look at him at all. Fortunately she has think skin. He was really fussing when it came to his hip and she ordered more x-rays to check out his hip. I don't think it was too long later and we got the results from the radiologist's thorough reading...fracture of the tibia...a buckle fracture...just above the ankle. They handed me a printout of the x-ray and showed me where the fracture was.
My heart sank...tibial fracture. :( Typically the bones in people with NF don't heal like normal bones and there may be incomplete healing that could lead to amputation. While the likelihood of this happening may be very, very small, it's now a concern on the table. The attending and I opted to not do the x-rays of the hip since he tolerated a hip exam from the resident. The docs at Shriners will do x-rays to see if anything else has fractured...let's avoid additional x-ray exposure.
The ER doc said that his boot/brace would do the same thing a splint they would put on and probably less traumatic than the splint since that's what he's used to. He's to follow up with an orthopedist in 7-10 days, we'll do Shriners since they are so familiar with T and NF issues. Travis and I got home around 1:45a and got his "boot" on and he wanted to sleep with mom (and dad). It was an up and down night for us with little sleep. It was medicine time at 8a and get the day going for phone calls to his local docs.
I left messages with his team at Shriners and informed the research coordinator of what happened. Travis didn't say he was in pain while he was sitting or laying down, so we didn't give him medicine. He's one very tough cookie with a high tolerance for pain. The research coordinator passed along what happened to the geneticist and was able to get in touch with T's team at Shriners. The PA Travis sees at Shriners was in a complicated surgery all day, so the care coordinator wasn't able to see the PA today. However, the care coordinator called and I was very reassured to be able to speak with him and ask questions we had for the immediate future.
Travis will be seen at Shriners this week, we don't know the day yet. The care coordinator will get back with us once he's able to speak with the PA. Travis is to wear his "boot" 24/7, except for a short time at bath time and we have to be careful. His foot is NOT dangling though. The research coordinator said it's okay for Travis to have Ibuprofen and Tylenol as needed for pain management. We are not sure if he'll need a cast and IF he does need one, how long he will be in it. That plan will be devised (and maybe revised) once he sees the docs at Shriners. The care coordinator said that even in kids without NF, orthopedists typically see patients about 7-10 days after injury to let the swelling and tenderness go down...of course that's after being seen by the ER or doc office. There's very little swelling, but I didn't swell when I broke my arm many years ago.
At this point, he will continue on the drug trial since there is nothing from the fracture that would prohibit/interfere with his participation in the trial...based on what we know at this moment.
Travis took a HUGE nap this afternoon and even played trains after he woke up. While it's not like before, he was able to scoot himself to a comfortable sitting position or lay down to push his trains around the little track we made. Travis must have a very high tolerance for pain based on his reactions to different things.
While we wish this wouldn't have happened, God continues to look out for Travis and our family. I'm very thankful that this happened after we moved to Salt Lake City. If this would have been 2 weeks ago, I would have had to pull the kids out of school early and they would have missed the fun last days of school activities. God has Travis in the palm of his hand.
Thank you for your prayers, support and thoughts. I will try to post when I know more.
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