My witty title game is a little off... sorry. LOL On Wednesday morning we headed to the Cities bright and early... the day was bright, I may not have been so much so. LOL As usual, Ki tried to throw a major fit when we put him in the van, but we were able to get on the road with enough time to arrive at Children's before our 9:30 appointment with the audiologist. His hearing aid fitting went great, and so far he seems to be adjusting to it quite well! He did cry when we first turned it on, but but after taking a little break and giving him a bit of time to get used to the head band (it's a bone-conduction aid, not an in-ear aid) we were able to turn it on again and have a much better response from him. He even got to do a quick FaceTime with Daddy at work and hear his voice. :) The trick at this point will be to keep the headband in the correct position on his head... he likes to lift his eyebrows/move his forehead and wriggle it down over his eyes. LOL At that point the hearing aid is no longer making contact with his head and doesn't allow for good reading. Happy to have this new "tool" in his arsenal! On the way to the Cities I made a call, once again, to the neurosurgery clinic to see if perhaps there were new openings/cancelations for MRI that we could make use of to save the early trip Thursday morning. Once again we were told no, but to check before leaving audiology. While meeting with the audiologist I got a call from the hospital regarding his Thursday appointments (screening for "the virus") and asked again. Sadly, we were once again left with news that we would need to come down in the morning as there were no openings in the schedule at either location. After leaving the appointment I was able to meet up with Brittany. She met Ki for the first time, and even held him for a little bit! It was nice to see her again, and hear about some improvements for Esther. She still has a long journey ahead of her, so please keep Esther and her family in your prayers! While visiting with Brittany I received ANOTHER call from the hospital regarding the MRI for the next morning. This time it was one of the coordinators asking for all the vent information they needed for the respiratory therapist (his home vent can not be used in MRI so they have to have an RT and a hospital/MRI-safe ventilator for his scans), and wondering if there was ANY way we could arrive earlier than 9am as they were concerned we wouldn't get through our scan in time to make it to our appointment with neurosurgery. I let her know that even 9am was pushing our threshold and then said I'd been calling off and on since Monday trying/hoping for a cancellation so we could get in while we were already down there. She replied, "For a quick-brain!? Absolutely!" I was beyond relieved!! We got an appointment in St. Paul for early afternoon. We still needed to plan to drive down for the 10am neurosurgeon visit, but it gave us an extra hour of cushion in the morning to deal with anything Ki might decide to throw into the mix. What an answer to prayer! The MRI went well for our little superhero... he cooperated and they were able to complete the scans quickly. On our way home from our day that had suddenly become far fuller than anticipated, I received a phone call from Amber, one of the members of the neurosurgical team. She asked if we'd left MRI yet... at that point I had a feeling about the direction of the conversation... The radiologist had called and let her know that his ventricles are significantly larger than his previous scans which were done in October. Bummer! There were other info-gathering questions, and then she informed me that a revision was needed and we could skip our Thursday appointment, if we were comfortable with that, and look at scheduling surgery for Friday or early next week.
Logistically, waiting until next week is SO much better... school is out, so no need to find rides for school kids or sitters for younger kids, and more time to plan/pack. So, currently we are looking at a VERY early arrival at Mpls. Children's on Monday morning (I am NOT a morning person, so 6am may as well be the middle of the night -- especially when it means a 4am wake up call!), with surgery at 8am. If I remember correctly, his previous surgery - even though they replaced the entire shunt - did not take a terribly long time, so I imagine this will be fairly quick. He will be required to stay at least one night for observation. Praying this overnight is far less eventful than the last and we can head home Tuesday afternoon. Obviously, we appreciate prayers for safe travel, safe surgery, and fast recovery! If I'm lame and don't update again before Christmas... Merry Christmas to all of you!
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AuthorHi. My name is Kristin. I am wife, mom, friend, Christ-lover. Thanks for stopping by and sharing in our story! ArchivesCategories
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