30 Mar Seriously??
I’m struggling to write this update because I really can’t believe we’re sitting here once again inpatient. Yes, inpatient, and I really don’t even want to put into writing why. We are waiting here overnight for Keegan to have an MRI and MRA tomorrow morning to make sure he didn’t have a stroke this afternoon or have a blood clot somewhere.
This afternoon, Keegan had a speech therapy appointment at Baylor Our Children’s House in Allen at 1:30pm. His TPN and lipids weren’t supposed to finish until almost 3pm. I was trying to get the kids out the door to therapy and grabbed Audrey’s diaper bag (without saline and heparin flushes), thinking what could possibly go wrong in the 45 minutes we would be gone. (Cue the suspenseful music now.) Halfway into his therapy appointment, the TPN pump started alarming. I open “monkey” to find that the pharmacy had underfilled it, and the bag had run dry a full hour and 15 minutes ahead of schedule. I was a little nervous but figured his lipids were running at just a high enough rate to keep the line open and not clot until I could get him home to properly disconnect him. But then the lipid pump started alarming that there was a problem on the patient side of the pump, which I still don’t understand what would have caused it. Anywho, this all means that I was about 15 minutes from home and 20 minutes from the Legacy campus with no way to keep Keegan’s port from clotting off.
I called the transplant coordinator once we were in the car and was told to go straight to the ER. Of course, let’s add insult to injury now…as I’m getting Keegan and Audrey out of the car in the rain, his g-tube extension gets caught on the carseat and pulls the whole thing clean out of his stomach. Now we have blood and stomach contents everywhere, getting rained on, Audrey’s crying, Keegan’s crying, yadda yadda. At least we were already at the ER!
(**Quick aside: Anyone who has ever had a child on a feeding pump will be amused to know that in my haste, I did not stop or clamp the pump. I just ran/shuffled into the ER carrying a 30lb child, a 16lb child in an infant carrier, a diaper bag, and the monkey roller bag full of pumps. It wasn’t until a good 10 minutes later that I realized the feeding pump was now covering my car floorboards in yummy, elecare formula. Yeah.)
Long story short, we got a new g-button in without having to dilate the stoma. His line wouldn’t draw back blood or flush, so we reaccessed his port with a new needle. It had blood return, so we thought all was well. Gray met us at the ER, was able to take Audrey to my mom, and we all breathed a sigh of relief.
The ER attending told us she was going to get our discharge papers ready and walked out. I handed Keegan’s clothes to Gray, asked him to get Keegan dressed, and stepped out to use the restroom. As I walk back in, Gray is telling Keegan, “come on, just put your arm in the shirt!” He then realizes that Keegan can’t move his left arm…at all. We ask him to clap, and he weakly slaps his right hand at his useless left hand. We ask him to do “touchdown”, and only the right arm goes up. At that point, I run out and call the attending doctor and nurses that we need help. They start testing him in different ways and still nothing. After about 6 minutes or so, he slowly started to regain use of his hand. No one bothered to look at his face or legs because we were too freaked out about his arm. After a few minutes, he seems to be perfectly fine again, but everyone in the room looking at him was clearly not ok. A quick portable chest x-ray shows his lungs are fine, so what the HECK just happened??
One phone call to the neurologist on-call, and we’re told that Keegan needs a full stroke work-up immediately, which includes a head CT and a full MRI. The CT can be done at Legacy, but because of Keegan’s cardiac history and the need for general anesthesia, he will need to be transfered downtown for the MRI. Again. The head CT was done quickly and seemed clear. We arrived downtown onto the neurology floor (seriously…I think this child has a secret agenda to test out every floor of this darn hospital!!) by 6pm. Other than being thoroughly exhausted, he seems pretty normal to us. We’ve finally gone over everything with everybody, and Keegan will have the MRI done tomorrow, along with an echo of his heart and a probably a bubble study of his line.
It’s pretty unlikely that he had a mini-stroke. It’s also pretty unlikely based on the anatomy of his line that he has a clot that broke off. HOWEVER, his donor heart did have a small hole called a PFO. It hasn’t been noted on his echos for the past year, but it may still be present intermittently. (Since Keegan’s heart is not his own, it’s REALLY unlikely that the PFO closed on its own.) Again, it’s all unlikely but still a possibility. And let’s be honest. If there is going to be a bad or rare complication, Keegan is going to get it.
We are truly just blessed and relieved that this happened in the ER with so many people around to witness it and act quickly. I was exhausted living through this afternoon and now, I’m even more exhausted typing it all back out. So if you could, we’d love for you to join us in praying for the following:
- Clean MRI results, and if anything, a clot that can be easily dissolved.
- A quiet, restful night for Keegan.
- Peace and resilience for Audrey. She was so confused being rushed into the ER, nurses descending on Keegan, him screaming, Gray rushing in and rushing her out, and once again, being shuffled off to my parents’ house. It’s just all a lot for a little girl to handle in the last 5 months.
- Strength and patience for Gray and me. I hate to even ask for it, but I don’t think I can deny it anymore. This afternoon was probably the scariest thing we’ve dealt with since seeing Keegan go from completely normal to complete kidney failure in 48 hours just 3 short months ago. It’s all just getting to be a bit too much.
We do not have a time for the MRI yet, but we will update throughout tomorrow to Twitter and Facebook. We just can’t thank you enough for your love, prayers, and support. We don’t know why Keegan is being tested once again, but we have faith that He will make it glorified in His time. Thank you for joining us in that prayer.