Day 13

It was a long day. For the most part things continued much as before, except he was very tired and didn't seem to have the calm attitude of yesterday; both lungs are compromised, the left worse but a little better this morning; efforts are still focused on that left lung. He's getting lots of the vest treatments and was required to stand and move his feet up and down several times today. He had an ultrasound on his lungs. He sat up for long periods twice.


He also had a physical therapist work with him a little, but he barely tolerated it by then. She'll be back in the morning. It seems like he just gets to sleep and somebody else wakes him up. The nurses say he's a very good patient. But his little puppy dog eyes around the mask seem to say to me that he's so very tired of all of it.
The lines/IVs were taken out of Joel's hands and wrists this afternoon and within a few minutes he understood that he could use his hands again...and pulled the NG tube and later disassembled his mask tubing. Extra X-rays ensued to make sure the NG tube was back in the right place...Reglan to help it uncoil and go back into intestine (which worked!), and the little DVD player was set up in Joel's reach to help keep those hands busy with pushing buttons.

I'm emotional at times and step behind the curtain because I hate to see him suffer such trials... and why as an innocent child?... I don't know how long it will continue... I'm grateful for the progress he's attained... and I miss Mike and family life.

We're counting on your continued support and prayers, it means so much to us!

Sleep well.
Dolores

www.wynkoopfamily.blogspot.com

12th Day

I saw Joel blow bubbles today, which is in itself a miracle!


The IVP treatments and throat suctioning seem to be helping, we are hopeful!
They did an upright chest X-ray today, thinking that if he sat in a chair, if there was fluid in his lungs it would shift to the bottom and they could somehow suction it out. Well, the X-ray didn't confirm that it was fluid.
Joel sat in a chair from about 8:15 this morning until 3:15 this afternoon (took a nap there, too)! Finally asked for bed, made the trek back with much support and has been resting fairly comfortably, watching movies.
He isn't allowed to eat until he can safely be off the Bi-PAP and the IVP treatments. He's on a different version of Pediasure, now round the clock, but the nurse explained to me that since it doesn't go into his stomach, he still feels hungry...which is why he keeps asking for "dinner" : (. At least he could have water and clear pop today!!


We have a hard time understanding what he's saying in the mask so I asked the Child Life director to make him some pictures to choose from. She did wonderfully, making two laminated pages of pictures so that he could point at what he wants. Joel actually pointed a few times today, usually at the cottage cheese, which we shouldn't have put on there (what were we thinking?! ) Previously his hands have been "broken" and useless to him, because of the various IVs and lines in them, so this is progress!
I agree with what the nurse said about him tonight, that he "looks" like a completely different boy than what his X-Ray says. He's pretty amazing.

Thank you to his school teacher and class for the Cars Blanket and poster with pictures!! He loves them! Papa came up tonight and brought Joel's home monitor strips and the gifts from his teacher, including his Valentines. We had bedtime prayer together. A quick visit, but we enjoyed it.


Goodnight Lightning McQueen.
Goodnight Bears.
Goodnight Papa.
Goodnight little Toy Story guys.
Goodnight Friends.
Goodnight Moon.

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!