Suprisingly, we are now home with Jack. It all started on Wednesday. He fell asleep in my lap and had a very hard time getting a full breath in. Luckily, our nurse was with us and she went with us to take Jack to the doctor. By the time we got there he was ok. His sats were fine and he was breathing ok. The dr. suggested more xoponex. That night I stayed up to listen to him. He did have a hard time. The next morning he was still having trouble so I took him into the Dr. and they called an ambulance to take him directly to the hospital. Once there they set him up with oxygen, xoponex, and blood work. He was working so hard to breathe that he couldn't even open his eyes. He layed there limp in our arms not being able to breathe. this hospital is awful. There is never a doctor on the floor, just nurses and the dr is on call. We did not see a doctor once even after repeatedly demanding. The dr. was in 3 back to back c-sections and couldn't come ot assess the situation! I started to throw a HUGE fit and they called a different doctor and I could only speak with her on the phone. I asked for Jack to br transferred to Rochester because we didn't feel comfortable with his treatment there and she denied the request. She told us the Dr. on call would have to make that determination. Once he finally came in Jack was doing worse than ever. His o2 sats were fine with the oxygen but his breathing had slowed and he was retracting horribly. I was terrified. I thought I was going to lose him. I started to take deep breaths in his hair to remember how he smelled. To say I was terrified was putting it lightly. The doctor called rochester for a life-flight but we had to wait for them to assemble their team and then fly to us. They told us that once the team was there they'd intubate and take him to the PICU. Once the transport team arrived you could see the looks on their faces. They were upset they hadn't been called sooner. One guy did an arterial blood gas and checked his IV to give a sedative and the other gave an inhaled medication called Racemic epinepherine (sp?). He did two treatments back to back. within 2 minutes Jack was opening his eyes, not retracting as much, and wanting to read a book! The respiratory therapist at the hospital quietly mentioned to us that the last shifts therapist had been trying to get the doctor to order that same medication all day and he refused. They took him without intubating but couldn't make any promises about what would happen during the flight. We were not allowed to ride along with him. It was so incredibly hard! They also had some severe weather to deal with and didn't know how the flight was going to go. We had to get in the car and drive 2 hours to Rochester. It was 11:30 p.m. by the time they took him and so we didn't get to the hospital until well after 1 am. To our suprise Jack was not intubated when we saw him! He had high flow o2 and they were doing breathing treatments every 30 minutes. There were lots of different drugs and the combination of them worked. He was still retracting and had stridor but it was not nearly as bad as it was before and they were able to control it with the Racemic. They weren't able to tell us what was wrong. They said it was probabl some sort of virus and the best they could say is acute respiratory distress and reactive airway disease. He progressively got better and by yesterday he was completely restless. They had him hooked up to all the monitors and he had an IV in his foot so he couldn't get down to try to walk. they finally started him back on his food at full feeds and he tolerated it so we were able to d/c iv fluids and they removed the foot board so he could walk. He felt so good to get up! He ran around the PICU unit! During rounds that morning they decided that if we had lived in Rochester they'd let us go home but since we had a long drive they wanted to keep him another day. When we found out that we were like "what does a 2 hour drive have anything to do with going home???" they said they wanted him to be spaced out on the xoponex a little more. Ummmm...he's getting xoponex every 4 hours and it only takes 2 hours to get home! Plus, we had our portable neb in the car! After we explained the logic to the doc he agreed to let us go home. Jack had a great night! It has been a long long time since he had breathed that quietly at night. Today he was running around outside and going down his slide. He's back to his normal no nap self! We are so incredibly thankful for the way everything turned out. It could have been so much worse!! Jack has incredible resilliance. He's just a true miracle!
Thank you all for your thoughts and prayers. It was a scary time in our lives. So many of you have been there and know what it is like. Thanks for all the support!!!!!!!!!