All I can say is WOW! I can't believe we have been in the hospital for 12 days. I thought for sure the way things were heading on Friday and Saturday that we would have got released on Sunday. Sunday, Monday, Tuesday and Wednesday he took dips. His afternoons were great which gave us hope of recovery, we'd come back in the mornings with not great news. It truly has been an emotional roller coaster ride.
So a short recap. Jordan has been in the hospital for Adenovirus and metopneumovirus. Both bad on their own. Basically an attack on the respiratory system. Not a good thing for my trach baby! As of Thursday of last week his fever went down, he was handling his feeds, he no longer needed his IV. He was looking good. So good that when I went to the hospital on Sunday I was planning on bringing him home. As of Sunday he started to desat. Which means his oxygen levels were low and that he was not getting enough air. They put him back on oxygen and kept him on the vent for longer hours at a time. When I left Sunday he was doing well again. If he could stay that way then he could be released Tuesday. Well Monday rolled around and he was doing great! My sister in law came to visit and bring me food. She held him for a while. When she was ready to trade me he got his trach bumped which made him cry a little. He had so many chords that I detached the vent to detangle them and put him back in bed. Any other day that would not have mattered. But Monday it did. He went down to 54 saturation level (should be 100) and was turning blue. I plopped him in bed and was getting oxygen back on him and the medical team rushed in and helped recover him by bagging him. His oxygen returned and he was back to normal. In fact I held him and played with him the rest of the afternoon. He was so interactive and pleasant that once again I thought we were recovering. Tuesday morning when I arrived he was completely lethargic and looked past me. He had another episode like Monday earlier that morning. By the afternoon again he was back to his playful self. I called in for the night report and he was still doing well. Came in this morning and the doctor put him on what they call a "Drager."
The Drager is a vent that breathes for you. Just so you know the difference, the regular LTV Vent that he was on would just force more air in his lungs but he did the breathing on his own. The doctors decided to take the proactive approach and give him a couple of days that he wouldn't have to labor so hard to breath. The thinking behind this is that he is under some post traumatic symptoms from his viruses. His poor little lungs are inflamed. Which doesn't give him much of an airway to breath. So instead of struggling give him a little help. That way he is not working so hard and can get the strength to recover. They are going to put him on that machine for 2 to 3 days. Then depending on how he is doing, they will put him back on his vent full time. Give him a couple of days on that, then slowly see if we can wing him off. If he handles all this OK, then we can finish winging him off the vent during the day time hours here at home. As the doctor puts it, Jordan is in then driver seat. He is in control. So, if he handles our plan and this gives him the time he needs to heal than we should be home in 1 to 2 weeks. The doctor also said that what he has going on right now, will take him 4 to 6 weeks to recover.
Needless to say, I was full of tears this morning. Knowing what the Drager was, I was so sad that he had gone down hill that much to need it. It scared me. I was however relieved to know that it would not be long term thing and that he didn't have to have the Drager that it was a choice to help him move along quicker to being well. These doctors, nurses and respiratory therapists are wonderful and so amazingly smart. They take the time to explain absolutely everything to me. They make sure that I not only understand but are OK with the decisions they have made. I love that they listen to me and I feel like I am part of their team in deciding what is best for my little boy.
To top it off today, Ryan left for his business trip to Albuquerque, NM and Mikey came home from school with pink eye. The doctor called us in a prescription and didn't make us come in because of our circumstances. Thank goodness. A little pity was appreciated. It puts a slight wrench in my daily plans but we have it worked out that I can still spend a good chunk of the day with Jordan.
So, now that I have had a good cry and have explained to my kids our plan of attack, we are ready to tackle the next couple of weeks that lie ahead of us.
Ryan and I call Jordan our miracle baby. Each day he just keeps on fighting. If it wasn't for the advancement of the medical world we wouldn't have him. We are so thankful for the many doctors, nurses, respiratory therapists, all the specialist who took the time to understand medicine so well that they have blessed our lives. But most importantly I am thankful for a loving Heavenly Father who has blessed me with Jordan. I know that any time He wants to take him home He can. But I also know that for some reason Jordan needs to be here exactly as he is. He is perfect in my eyes and I love him dearly. I thank the Lord daily for blessing us with him. He has touched so many people in his short little existence. I am honored and feel privileged to be his Mom.
Thanks again to some wonderful friends. Angela Grossnickle, Carrie Johnson, Kim Janeway, Loretta Smith, Kaitlin Selfiason, Lorraine Janeway for watching my dear children these last 12 days. To Tanya who has brought food to the hospital so I will eat well. To Amy who is teaching my Boot Camp class still after all this time. For the meals brought in by the Wilson's, Shurts, Nelson's, Templeton's, Couch's, and Wolfe's. I hope I didn't leave anybody out. I am so thankful for all the help and love you have shown to us.
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