No News, Is Good News

No news, is good news.

Ryan came home from his extensive stay at the hospital on October 6, 2012. Since then, he has not been sick enough to be re-admitted. Aside from one small cold, he made it through the severe flu season unscathed. Several doctor appointments have proven that his lungs are progressively growing and healing. The pressure settings on his ventilator have been reduced to very respectable levels and we can see that his calories are being used for full body growth and not just trying to breathe. The level of oxygen that he is requiring is still at 3 L/min, 24 h/day. But at this point weaning on the oxygen is second to weaning the necessity of the vent.

June 11, Ryan's doctors have him scheduled for his yearly tune up on his vent. The is a 3 day, 2 night stay at the hospital . The reason for this admission is not because he is in any way sick, but to monitor different levels in his blood over a period of time. There are only two outcomes that mom and I anticipate. Either, they will keep the vent settings the same or reduce some of the settings. We don't foresee them raising pressures, but anything can happen.

Even with all of the good things happening lately, we did have one scare. Ryan had a routine chest X-ray about 2 weeks ago, followed by a visit to his Pulmonologist at the Home Vent Clinic. He Was lying on the table waiting for the doctor to come in, when he started coughing. Right away his Oxygen sats started dropping rapidly, getting lower and lower. His eyes starting rolling back and he started turning blue. Immediately we hooked up his resuscitation bag to his oxygen tank and proceeded to give him hand ventilated breathes. We increased his Oxygen as high as it would go, this did not help. As mom was bagging him, she felt a lot of tight resistance when hand ventilating. After we tried this, we decided we should change his trach. So right there on the exam table, mom and I did an emergency trach change. And at last, the answer. Ryan had a large mucus plug at the end of his trach which was restricting him from receiving O2. Once we got the new trach in, his Oxygen sats started coming back up. Moments like this are rare and terrifying, but a reminder that these things can happen and panicking is not an option. It feels really good knowing that we basically saved his life right then and there thanks to the proper training we received prior to  Ryan coming home from the hospital.

Since the weather is starting to get warmer and there are not nearly as many bugs for him to catch. We have been walking Ryan on a weekly journey to our local yogurt shop. Round trip, it is only 1.3 miles, but he seems to do really well. He enjoys the small things in life, like watching the trees move in the wind. Something we often take for granted.

Over the last seven months, not much has changed in the way of Ryan's health. Growing out of the condition he has is a slow, slow process that takes years. We don't see daily or even weekly changes. But if we look back over the last seven months, things are progressing forward.

New Year / New Start

We made it. We missed Christmas at home in 2011, but 2012 was a different story. Ryan successfully stayed home.

Ryan did very well with all of the visitors we had on Christmas day. We took him out of his room and set up everything in the living room where all of the people would be. He did decide to take a nap in the middle of everything, but we can't really blame him. It was a big day. Every year our city escorts THE Santa up and down every street on the city fire truck. They drive by slow with sirens in full volume. Ryan didn't get to see them this year, and actually slept through all of the noise. I decided to take a video of them passing with my phone so I could show him when he woke up. He was mesmerized by the sound and appears to be in a trance when watching the video. Next year we are hoping that he is strong enough to wait in the front yard when they come by.

Even though Ryan did not spend this Christmas in the hospital. It did come close. We were fortunate to only visit the local Urgent Care. We noticed a day or two after the 25th that he was more irritable than normal. His body temperature was going up and he was grabbing the back of his head a lot. We came to the conclusion that a visit to the doctors was needed. On our visit to the Urgent Care on 12/28 it turned out that Ryan had a double ear infection. His right ear was more infected than his left according to the doctor that looked him over. Antibiotics were prescribed and we were sent home. Sunday morning, 12/30, we noticed a  blood tinged fluid draining from Ryan's right ear. We didn't want to take any chances, so back to Urgent Care we went. This time we had to go to a different office due to the first one not being open on Sunday. The doctor there changed his antibiotic to a different one and increased the dosage to really hit the infection hard. It took a few days for his ear to stop draining, but for several days now there has been no fluid. He appears to be back to his old self again. We think Ryan's ears were jealous that they were not getting medical attention like the rest of his body.

Other than that, the past two weeks have been pretty uneventful.

Ryan has had some visitors the past few weeks that work with him on learning and functionality. Occupational Therapy and Infant Play Therapy stop by once a week each for an hour and work with him and teach us what they are doing so that we can work with Ryan during the week while waiting for their next appointment. It is an extremely slow process that will take time to show results. It's a little like watching grass grow.

Old Car Seat

New Car Seat

This Friday Ryan has an appointment with the home vent clinic that he sees. We are going to see if they are are brave enough to go down on some of his vent pressures and get Ryan one step closer to getting off of his vent. But in order to get to his appointment, Ryan will get to ride in his new, big boy car seat. He was just too squished in his infant seat. We tried out a test run on the floor in his room to get the straps adjusted properly. We think he likes it.

For more photos of Ryan, follow us on Instagram @hopeniccolle & @j_tatar.