I'm not quite sure where to begin with all the medical stuff going on lately. I've had a lot of questions about Josie's surgery and next steps so this is the best way to update everyone:) I apologize in advance for the length but it is the best way to get all the information to family and friends. Josie had an endoscopic repair of her laryngeal cleft on Friday. A laryngeal cleft is a gap between the oesophagus and trachea, which allows food or fluid to pass into the airway.[3] (to quote Wikipedia:). This has allowed food, drink, and even saliva to get into Josie's lungs. We tested a temporary repair in December and she lost all symptoms of choking and began eating more. As the temporary repair went away we started seeing those symptoms again so the doctors determined that she was a good candidate for the permanent repair. They had been hesitant in the past because there was concern she may require a trach as a result of the surgery. In December they examined her airway and it was much more enflamed than they anticipated so it became critical that we find a permanent fix to the aspirations. The surgeon was very pleased with the surgery this time. He created scar tissue in either side of the gap and then stitched it together so as it heals it will close the gap. The stitches will dissolve over a 40 day period of time. The surgery was quicker than we anticipated and the surgeon only worked on her for about 90 minutes. When he came out the OR to visit with us he said he thought it was a life saving procedure. This caught us off guard because while we knew it was serious and needed to be done we didn't realize her airway health had progressed to this point. Josie did much better than we expected in the recovery room. She had an anesthesiologist that typically does the cardiac and organ transplant surgeries and he was amazing. He did a great job of managing her pain but not to the extent that it effected her breathing. We are always concerned about her pain management after surgery and he explained to us that it is a fine line with kiddos like Josie who have low muscle tone and abnormal airway. Narcotics typically cause them to become even more difficult to breath normally so sometimes they have to weigh breathing versus pain. Luckily she did pretty well with the breathing and was off oxygen by midnight.
This was our view pretty much the first night in the ICU. Josie had significant pain until about 11 that night so it was rough sledding for awhile. She has become quite a fighter which is good on most days, but on days like this where she is hooked up to a thousand and one different cords, IVs, and oxygen it is hard to restrain her. Chad often had to lay across her body and I would hold her head still or arm while the doctors gave her meds or took vitals. To be honest it was exhausting. Luckily they put us in one of the large ICU rooms so Chad could stay. He slept in a chair while I slept in the bed with Josie. If you've never been in a pediatric ICU when I say sleep it is not really sleep. It is very well lit even at night, lots of noise from Josie's monitors as well as other kiddos next door, nurses in and out every hour, and trying not to tangle our child's cords and lines while you lay with them. If I moved a muscle Josie would cry out and reach for me. We were so glad when they told us the next day that Josie had done well enough over night to move to a regular floor. That meant FREEDOM from most of the cords! We even got to go the kid's playroom and outdoor garden for awhile which was a nice break from the hospital room. We backed off the heavy duty pain medicine on Saturday too, but did it a little too soon. Josie was pretty uncomfortable until the evening but then she rested really well that night. The highlight of the day was Facetiming with Hank. That kid can make Josie smile through just about anything:) By Sunday morning we were ready to get home!
We are scheduled to see our airway specialist in KC in two weeks and then travel to St. Louis again in 4 weeks. I know many are wondering if this means Josie will eat. Well, of course, in Josie style that is a complicated answer:) This surgery, while initially was intended to help her eat, really turned into more of an airway health surgery. Our next steps are to begin feeding therapy again and see if we can modify her foods to get around her other cleft, her submucous cleft, on the roof of her mouth. This is allowing food to get into her sinuses while she eats are partly to blame for the constant sinus infections. Our hope is we can modify food and avoid a corrective surgery for this, but if not we do have another specialist in St. Louis that we will see to have it surgically repaired. Right now, we don't really want to discuss another surgery if we can avoid it. Soooo, in the meantime she is back to eating a little and hoping to find some solutions soon.
Finally, we could not have gotten through this latest surgery without our pit team which is incredible! Nana and Aunt Karen cleaned our house after we left, Hank was in good hands, and Nana restocked our fridge before we came home. There is something AMAZING about coming home to a clean house and stocked fridge after several long days at the hospital. Mammy is keeping us company this week which is keeping Josie busy:) Josie's classmates and teachers sent her get well videos which was so fun for her to watch. The prayer warriors who prayed for Josie, our family, and her medical team, some of which have never met her, are so greatly appreciated.
Disregard any typos or grammatical errors, I'm still a tad sleep deprived:)
