Over the past few days we have had a bit of a scare with Kaden. Miki and I have been noticing that the pump Kaden had installed looks like it’s sticking out further than in previous weeks. We chalked it up to reduced swelling after surgery and thought we would ask the doctor at today’s appointment. However, on Tuesday when I picked Kaden up from school his physical therapist was waiting for me and said that the pump was really sticking out when Kaden sat down. When I saw it I thought, that just doesn’t look right.
The pump was inserted below Kade’s rib cage on the right side of his abdomen. There isn’t a lot of room between his ribs and the top of his hip. And, he’s kinda scrawny. Don’t get me wrong Kade is a big 5 year old. He eats like a horse, but also burns way more calories than the average 5 year old. His muscles are contracting sometimes all day, every day. That’s one heck of a workout.
Anyways, I took Kaden to therapy straight from school. When we arrived, there was a physical therapist who Kaden has seen before at the front desk. She and I have talked about the baclofen pump several times before as she has worked with several kids that have had one. She took one look and said, “Yeah, that’s doesn’t look normal. The pump should stay flush with his body and it’s almost at a 45 degree angle pushing out from the top.” When Kaden is sitting, the top of the pump pushes out far enough that you could put a couple fingers behind it. Needless to say, I am now completely freaked out. I put Kaden back in the car and we are about to head off to Children’s Hospital. Before we make it out of the parking lot Ann (the therapist) comes out to catch us because she has called Kaden’s doctor on her cell phone and the doctor wants to talk to me. Kaden’s doctor calms me down and says there is no emergency, they sometimes see this in smaller kids. She tells me to wrap him with an ace bandage and she would take a look at it on Thursday. I cannot say enough about how grateful we are to have such a great therapy place. Thank you, Ann!
So Miki and I were biting our nails until his appointment today and I was sure that we would go to the appointment and they would end up admitting Kade for a surgical repair(our worst nightmare). The doctor came in, took a look and said the pump has definitely loosened in the pocket. While she didn’t throw the neurosurgeon under the bus I could tell she wasn’t overly thrilled with the job he did with the insertion of the pump. Kaden’s incision is right at the top of the pump. That is also where they cut the muscle to make the pocket. If you can imagine, think of a hockey puck in a small zip lock bag that it barely fits into. When you move that hockey puck back and forth the top pops open. The doctor said that generally the surgeon puts the incision an inch or two above where the pump sits. Hence, it would be like a hockey puck in a taller bag that doesn’t put pressure on the enclosure. At this point I am NOT happy.
The doctor called neurosurgery and they came down and took a look. First they assured me that he wasn’t in any danger or anything and that they would likely not do anything surgical unless we started to have complications. You know, like the pump flipping over. WHAT?! Flipping over!….. I didn’t know that was even an option. I guess I should be happy he didn’t say a complication like, “the pump popping out”. Unbelievable!
So, what we have decided to do is keep Kaden’s abdomen wrapped for at least 4-6 weeks and see if the muscle will form some scar tissue to help hold it down. We now have an appointment with the neurosurgeon in December for a recheck. He better have a good reason for the incision position or I may strangle him. The guy supposedly does these all the time. Now Kade has to suffer through a wearing a wrap for who knows how long.
Well, at least the pump is working! He has loosened a bit more and the doctor did increase his dose again today. It will be interesting to see how this increase effects him. I should say that even though I am not happy about recent events I am ecstatic that we are not in the hospital awaiting another surgery and that Kade is still experiencing some good results from the medicine. Have to try to see the bright side, right? And, yes, I will try to restrain myself when we meet with the surgeon next month.
Hope everyone has a great weekend. Thanks for letting me vent.
i agree – how scary! it sounds like you handled it well. i can't imagine being in your position and what i would do if in the same situation. we feel so helpless at times and trust in the medical staff to take care of our loved ones. all we want is what's best for our children – we fight for them more than we would fight for ourselves. keep up the good fight – sounds like you're handling it well and it really sounds likes Kaden is just rolling with the punches – good job, Kaden! : )