11 Days

Joel's Morning X-ray showed Left lung is collapsed again. Right lung is looking better today. They are stopping the vest treatment and going with a different "IPV" mask for treatments every 2 hours. Interpulmonary Percussive Ventilation. It pushes air into his mouth/lungs with a rhythm much like a "choo-choo" train. Will still use the Bi-PAP mask between treatments. They don't know if there is a mucus plug or just lots of secretions. They want him up in a chair as much as possible. They're not letting him eat to minimize the possibility of throwing up and aspirating. Sips of water every so often. This is SO hard to withhold when your child needs and wants water! He is still being fed by NG tube that extends beyond the stomach. 


4:00 PM X-ray showed left lung is still not inflated. 
Joel got into the chair twice today, each direction takes about 15 minutes bed to chair or chair to bed. No trips to potty, not enough energy. They are planning to remove the arterial line in his left wrist, as long as his blood pressure remains good. He's still experiencing agitation and anxiety, which they're treating with Ativan but it's slow-acting.

The notes above are from Mike who is still with him tonight, we will swap stations again in the morning. It's hard to be away from Joel, or from the three younger kids! At least the younger kids are doing much better this week! Our pediatrician believes that we should keep them all home and away from new illnesses until Joel is home and recovered. I think she's right!!

Heavenly Father, we're thankful for each day and each small gain. And thank you for friends and family who help us in this time of need.

Day 10

Joel's lungs are worse. He was put back on the supermask Bi-Pap this morning. When they tried to have him blow bubbles to exercise his lungs, Joel asked for the "Max" back. That says he realizes that he can't breathe well without it.

 On a happier note, he received a picture card from his friend Payton tonight. Payton is the little girl from his old school that has such a big heart for Joel. He often speaks of her. Papa showed the picture to him and Joel said, "Aww, it's Joel and Payton!"

Papa told him Payton loves him and wants him to get well. 

Thank you friends!!

Day 9 after surgery

Joel "sat up" a long time today in the chair and in the bed and made two laborious treks to the potty! The various respiratory treatments continue day and night. Cloudy lungs in x-rays, coughing and rough breathing but I think he's gonna beat this! I talked to him about the people that love him and are praying for him and how Heavenly Father and Jesus love him and are helping him to get well. He listened quietly.
Mike and I traded places tonight, his turn for Sunday and Monday.
G'night

Day 8

Joel made some progress today! He's back on the regular oxygen mask and the foley is out. He's still receiving chest-pounding vest treatments, pulmicort breathing treatments, Lasix diuretic and Ativan for anxiety. He's still spiking temps of nearly 102 and coughing a lot. They'd hoped to get him up in the chair but he wasn't able to yet; he's weak, the bed is too high even at the lowest setting, and their step stools are too low. He needs to be lifted up over and over to stay up in the bed at the right incline, which is exhausting. But I'm so happy he's making some progress and I'm cherishing moments with my little boy. He just asked himself quietly, after coughing, "Joel, you okay?" ..."Yeah," he answered pitifully.
The surgeon said this morning that Joel will be here another week.
Still praying.

Day 7 after Surgery, Day 14 in Children's

Well, we've had a rough day. Joel's lungs are not well, chest X-rays bad this morning and worse tonight. He's been agitated and tugging to breathe, fever all day, three chest-shaking vest treatments, they've upped his Lasix and tonight he's on a Supermask with tight seal around his nose and mouth and higher oxygen pressure. Sorry this isn't more upbeat... we're praying for those lungs to clear of fluid and be fully inflated and working!
Thanks for all the help dear family and friends!

Happy Birthday, Mike!

I love you more than all the Valentines in February!
And I miss you. I hope your birthday was fun!
XXOXOO,
Dolores

Joel, Day 6 after surgery

Joel is off the vent!! He's on the canula for oxygen and still has the NG but can drink and is now on a clear liquid diet. He sat up in a chair for a little while this morning. He's coughing a lot, is very shaky and tonight was extremely agitated. The nurse said he must've become addicted to one of the drugs he was on (Versed?) and is going through withdrawals. This is another really tough thing to have to watch our poor boy endure! He's also on steroids to help reduce throat swelling and steroids always make him act strange. Joel had me massage his left foot for a long time (not the right one because the drain tube just came out of that upper leg) and sing "You Know Better Than I" from "Joseph King of Dreams" to help him fall asleep...and he was also given some Ativan (sp?).
So, aside from the congestion and the addiction, he's doing well! What a roller coaster this is, but we're making gains, which I'm so grateful for.
He's awake again, goodnight for now.