It has been an extremely long time since I have posted anything on here or updated anyone besides my immediate family on what happened with Bradley back in January and February and what is currently going on with him. I am not to sure exactly why I kind of distanced myself from the blog but I just found myself with no drive to write anything and I just wanted to spend every moment I had with Bradley. Now as I write that out, it makes complete sense in my head of why I would want that because we truthfully went through a lot as a family in the months of December, January, and February. I thankfully got to enjoy some much needed time with baby B before I went back to work and now things are a lot more settled. Before I jump into filling you all in, I want to first start off by saying God is amazing and makes miracles happen! Since I have had Bradley my faith has grown so much deeper and stronger. Having a child opens your eyes so much and then when you are faced with hard trials that involve your child you start to see things a lot differently.
Well now to fill you all in I will first start with kind of an overview of what led to B's diagnosis. In December B woke up in the middle of the night gasping for air and coughing in between. I can't remember if I screamed for Ben or really what happened next but all I know is we were out the door within minutes. We got to Rady's and we were admitted immediately into the ER and told he had a severe case of croup. Bradley was given a steroid, followed by a breathing treatment and had to be watched for a couple of hours to make sure he didn't have any bad reactions and that his stridor was completely gone. Stridor was their main concern because it indicates that the airway is closing or is almost entirely closed, which is what was causing him to gasp for air. We were watched for two hours and we were given the ok to go home and we began to get ready to leave. As soon as I stood up while holding very sleepy B he began to gasp for air again. We were then admitted into the hospital to be watched and Bradley was given another breathing treatment. We were sent home that night and it was the beginning of a very tiresome next couple of months. He was admitted into the hospital two other times that week and we even spent a few days in the ICU because they had very rarely seen a case of croup this severe. The week before Christmas we were finally sent home with a week regimen of steroids to give him and we finally started to see improvement and had our little active boy back again. Two days after Christmas B got sick again and that began our long wait to see the ENT in January. It started with him having high fevers for days followed by croup and stridor again and this became B's new normal. Just writing this makes me exhausted because we never got more then 3-5 hours of sleep a night for those two months. Our holidays were spent in and out of the hospital and our planned trips to see christmas lights were made into drives to get cold air into B's airway so it wouldn't close. We would constantly have to be up in the middle of night doing steamed baths and then going outside into the cool air and would do this about 2-4 times a night.
Now fast forward to the middle of January and we no longer have our giggly, adventurous, and happy baby. B could very rarely go outside since even just being out for a bit would make him worse. I became the most worried and stressed out I think I have ever been when he stopped wanting to eat or when he tried he would choke on the smallest pieces of food. Then he started to sleep 3-5 hours and only be awake for at most two hours and crash again for the rest of the day. That's where I couldn't take it any longer and I felt like I was losing my mind because this was no longer normal and I knew it was so much more then the same excuse I would get over and over by Drs that it was just croup or that it wasn't possible that he had a case of croup like this. I begged for an urgent appointment with ENT for about two weeks and finally was given an appointment. Going into the ENT appointment we were expecting to just get a consultation and to be going home that same day but that changed probably 10 minutes into the appointment. I think I got halfway through telling the Dr. what had been going on and he stood up, looked concerned and said he would be right back. He came back in and said we are admitting you in the hospital and B is going to go into emergency surgery that day to have a laryngoscopy and bronchoscopy procedure done. Finally, a Dr. that didn't just say wait it out or have a confused look on his face and just send us home but someone who said clearly something is wrong and something needs to happen now to fix it. Waiting for B to be done with the scope was one of the hardest moments. Its hard to not think of all the horrible scenarios that could have been going on with him. The surgeon came into our meeting room and we were given the news (one that were praying against) that B had a very rare congenital airway defect called Subglottic Stenosis. They were not exactly sure how severe it was yet because on top of that he had croup still which was causing a lot of inflammation. He was instantly put on new breathing treatments, reflux medicine to help with inflammation, and a very strong antibiotic that was given through his IV. The next day we met our new team of ENT doctors and we were given the hard reality of B's diagnosis. They said that currently B was at a grade 3 out of 4 which meant his airway was between 70% - 99% closed and his currently was 90% closed. We were told that they were going to wait on doing any surgery and wait a couple days to see if the new medications help and reduce the swelling. They however told us what our future most likely would look like. Bradley would most likely need to get a dilation (where the try to expand the airway with a balloon) and that he would probably need to have a tracheostomy for no less then 2-3 months. They would then need to do a very big reconstructive surgery and it would be a minimum of 2 weeks in the ICU and a total of 9 months in recovery. Our lives were turned upside down within just one day and the future we had for B all of a sudden looked much differently. We spent the rest of the week making sure B got better and he was closely monitored. We finally were able to be released to go home but we were sent with a new set of medications that he had to take daily which also included breathing treatments.
We were given orders to stay home and limit visitors and to not have him around more then one child at a time because it was crucial that he did not get sick again before his next scope. Two weeks later we went back in for his follow up scope to see the true grade of his stenosis and he was most likely was going to have a tracheostomy put in that day. Instead things took a turn for the better and the first thing the doctor said when he walked in after surgery was "is this the same boy I saw two weeks ago" and even said "I very rarely have ever seen this happen before". Bradley's airway went from a grade 4 to barely being a grade 1!!!! Praise God! B's airway had improved so much that no other surgery was needed. We seriously were all in shock including the doctor and we were able to leave that same day with the plan for B to stay on his medications, breathing treatments, and to be seen in a month or two again to keep an eye on his airway.
Now after that huge novel hopefully you are all still with me (haha)! Present day B is doing very well and we are back to a much more normal life again. B hasn't been sick again since January and is still currently on his breathing treatments. We are still very cautious and only let him be around so many people and stay very clear of anyone that is sick. The reality of all of this is B still currently has the diagnosis of a very rare congenital airway defect and although he isn't gasping for air anymore we still have to do breathing treatments every day and we constantly hear either minor labored breathing when he plays or like how some people explain it as congestion in his chest when the treatments wear off. We are scheduled for his next scope in April and I believe we will have a better idea if his airway will need any intervention or if they think he will grow out of it. After all of this craziness we have dealt with I am just so grateful to have my little boy running around and enjoying life again. I am so grateful for all the love and support we are surrounded by and I could not thank our families enough, especially my mom and Ben's mom for all their help while we were in the hospital. Like I said God is amazing and truly showed us a miracle and showed us just how strong prayer really is! B's journey isn't over and we may have some bumps down the road but we are ready to face that each day at a time but most of all we are enjoying each day and surrounding our little one with all the love he deserves. I just want to thank everyone again for all your love, support, and prayers. You will be seeing a lot more of us again and I have a lot of new exciting things planned for the blog and some surprises to come!