It's not pneumonia. But you probably already know that. I've been doing dressing change, eating lunch, and force feeding my child, so I'm a little behind. Courtney posted that Tripp's lungs look really good. The reason he's having trouble breathing is because of all the mucousy secretions from his virus. His trach is getting clogged up. (That's my really "I don't know anything about anything" explanation.) Anyway, they are starting him on Atrovent to help dry up the secretions, but have to be careful not to dry him out too much. They are still in the ICU, and he did have another episode this morning, but Courtney says she knows what to look for now and how to help him before he gets in too much trouble. For her explanation (which is much better than mine), you can visit his Caring Bridge site.
An update from Tripp's Caring Bridge:
Hey guys. Real quick update...Today Tripp was taking a nap and started breathing really heavy. I didn't think much of it.. just that he was probably in a deep sleep. Well, when he woke up, he was in a complete state of panic. Nothing was coming through the trach at all... he was making noise through his mouth but by trying REALLY hard to do so. His feet and hands started turning purple and I could tell by his face that something was not right. (Thank the GOOD LORD that my mom had just gotten there and I wasn't by myself). So we put him on the changing table... and within seconds, he was completely grey... everywhere- his mouth, face eyes... everything. There was no air coming out of the trach, so I took that one out and put a new one in. There was still no air coming out. By this time he was giving up and had closed his eyes. I shook him and they opened back for a second. I got the ambu bag and gave him some breaths through the trach. Still nothing. So I did it again. He was still moving some air through his mouth and had a pulse, so I knew breaths were the only thing I could do. Then I called 911. Soon after, he finally started breathing through the trach and starting getting color back. The paramedics came in about 10 minutes (Thank God I had gotten him back breathing). By then his oxygen was about 93% with blow-by oxygen ON. So they brought in to the Ochsner ER by ambulance. Yeah... not over yet. THEN, he had another one of the exact same episodes in the ER. Except this time, the nurses were just standing there watching ME try to unclog the trach (oh, by the way, they think he is doing that because he is getting mucous plugs in his trach because of the thick secretions he's having.. That OR pneumonia). Anyway, so going back to me being the doctor and the nurse and everything else.... there ya go. So when no one else would do ANYTHING.... I called my ENT (THANK THE GOOD LORD ABOVE FOR OUR ENT......... I COULD NOT HAVE A BETTER ONE. SHE IS AMAZING...She's not only Tripp's ENT, but MY therapist.) I called her cell and she LEFT HER HOUSE (which is close to the hospital, thank GOD) and was there in 5 minutes. She changed the trach out again and we got it unclogged. SOO... we are now in ICU and he is stable and breathing better. He is on oxygen and humidified air to try and thin out the secretions. Please continue to pray for him to get better and also for us not to catch anything else from this hospital!) I will try my best to keep you updated. I cannot express how grateful I am for all of you and for everyone's constant love and support. I know it's what is keeping me going. Thank you. Love you all. Courtney
Can you imagine? Can you imagine watching your child wake up and having to see that panicked look in his eyes? Can you imagine literally breathing for him until help arrives? And then, you go to the ER and it happens again, and the people you are trusting to care for your child are just STANDING THERE while YOU have to be the one saving your kid's life... because they DON'T KNOW WHAT TO DO.
That's one of the worst things about EB. Half the time, the people who are SUPPOSED to know, who are SUPPOSED to be able to help either just stand there or make matters worse. YOU, as the parent, literally hold your child's life in YOUR hands. It's up to you to nurse, doctor, educate. It's overwhelming, exhausting, and completely terrifying.
Please be in continued prayer for Tripp and his parents. We've only experienced a tiny fraction of what they have, and I know how scary it was for us. Please pray for strength, courage, perserverence, and of course healing.