Note: I apologize in advance to those of you who haven't seen my Facebook posts and need to play catch up. I have copied and pasted my last 4 Facebook posts at the bottom of this post in case you need it!
Yesterday was fairly uneventful. But early this morning, Austin started to struggle and work even harder to breathe. They increased the amount of oxygen and changed it to a high flow (essentially adding warm moisture) in hopes to loosen some of his secretions. Yesterday his cough was fairly productive and although he didn't like it, he was coughing stuff up and clearing his lungs. Today it's a very dry and non-productive cough and all the secretions that need to move out, are stuck in his lungs. He started to struggle to keep his oxygen levels above 90% and they had to increase the amount of support he needed several times. Respiratory came in and gave him a treatment and some percussions (pounded on his chest to loosen things up) and he improved for a bit. They repeated his chest x-ray from Friday and it confirmed pneumonia. They started antibiotics right away. Unfortunately, Austin being comfortable was short lived.
Austin was moved to PICU around 3pm today and placed on a RAM machine. It was explained to us that it's similar to an adult CPAP machine and can provide him more support during both inhaling and exhaling. The intensivist (doctor who specializes in ICU care) came and and talked to us. We now have a few answers, he tested positive for a virus that is a "cousin" of RSV and he has pneumonia. They will continue to treat his symptoms to support him and make him comfortable. If at any point, his labs indicate his lung function is decreasing (meaning he's not inhaling oxygen and exhaling carbon dioxide at the right levels), he would need to be put on a ventilator. Our prayers are that the worst is behind us and he's getting the support he needs so he can get some rest and start to improve.
As always, we are so appreciative for all the support, love, thoughts and prayers! Please keep them coming as the next few days could be full of ups and downs.
Hugs,
Tara and Brian
Max and Austin
FB Post from Friday, January 3, 2020
Home was short lived...Austin is back inpatient at Children’s. It was a long afternoon in the ER. After lots of labs and tests and a chest X-ray, it seems like an upper respiratory virus has hit the poor kiddo really hard. He’s absolutely miserable and really needs the extra support right now. Biggest goals are keeping his fever down and a tiny bit of oxygen. He’s also had some very loose stools and some vomiting. The congestion is impacting his digestive tract. He’s in the right place it’s just hard to be away from home.
FB Post from Wednesday, January 1, 2020
And...we’re home! Austin did fabulous restarting his feeds and with pain control. Thank you to everyone for all your thoughts and prayers! Special thank you to Lynn and Wanda Jones for taking amazing care of Max the last 2 days! We’re so blessed to have you and love you very much!
FB Post from Tuesday, December 31, 2019 (afternoon)
Austin is doing great! We’re in our room on the 8th floor with a great view of downtown Mpls!
Dr. Kreykes said the incisional hernia was a little bigger than he expected (about tip of a finger) but is fixed now. He has about a 2” incision. The Broviac is in the same location as before.
Dr. Arora saw nothing abnormal with the endoscopy. Esophagus and stomach both look great! With the colonoscopy the colon (large intestine) was unremarkable but the small bowel did have some small patches of inflammation/irritation. He used the analogy of little sand paper scratches. There’s no reason to believe there’s anything chronic but more likely acute. He took several biopsies to provide more information on the causes of the inflammation and how best to treat it if at all. All in all good news!
Thank you so much for all the thoughts and prayers! We are always grateful!
Wishing everyone a safe and Happy New Year!
FB Post from Tuesday, December 31, 2019 (morning)
Austin just went back to OR. Expecting 1-2 hours to get everything done. Dr. Kreykes will start with the Broviac placement and the incisional hernia repair, then Dr. Arora will do the scopes. Dr. Arora and Dr. Kevan decided yesterday to do a full colonoscopy today rather than just the sigmoidoscopy. Austin had a couple labs come back recently that may indicate some inflammation in his colon. They decided to get an extra good look at things. Austin will be staying inpatient at least tonight to make sure he tolerates the restart of his feeds. Prayers for a successful surgery and an uneventful recovery!
Tara, I’m so sorry to hear about Austin and his pneumonia. That sounds really tough to watch. You are in the best place possible for the kind of care Austin needs right now. That precious little boy has more courage and stamina than any of us combined. Prayers continue.
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