18 Days Post Surgery

We have now reached the number of days that Joel was in the hospital for his last heart surgery in 2005. But this time Joel was hospitalized for about a week pre-surgery, too.
Joel's lungs looked cloudier this morning but his INR reached 3.4. His day was much like yesterday, except that Papa had to leave this morning.





Papa went home, picked up the other little kids, brought Timmy to Janina's for the day (so Lora could catch up on homework) and took Ella and Lucy to the university hospital for ENT appointments.










He said Lucy was very good and Ella was pretty good too. Those ear exams aren't easy for the little kids.
Again, thanks to all who are going out of their way to help our family keep functioning! God bless you!

17 days

I'm posting LAST NIGHT'S UPDATE, for Sunday, February 27th:

The X-rays were much better this morning! INR up to 2.5, they want it at 3.5. The surgeon emphasized to us again that it was a miracle Joel hadn't had a stroke before the surgery. Now that we know he's "a clotter", we have to treat that aggressively. For instance, one night a young nurse attempted to give him his Coumadin crushed in water in a syringe, by mouth. He's used to it in applesauce, so he promptly spit it out. Some was left in the syringe, which I told her not to give to him, but to go show to the person in charge and ask what to do. Long story short: we are to give him MORE rather than less, if that sort of thing ever happens at home (which it hadn't before, he always eats it in applesauce).










Today We enjoyed spending time together. Joel took a long nap before supper, then we had a hard time waking him and he woke up with another fever and tight, fast breathing. Evenings are the hardest. Vest treatments every 4 hours... He'll be here several more days.
Love to all, we miss you!
Dolores

Day 16

Joel's INR was 2 today, up a little but not yet where they want it. He woke up unhappy like last night but cheered some after talking to Papa on the phone. He said, "Papa, help! Come stay with Joel. Drive car. Get keys!"

His X-rays were a little better! He walked from his bed to mine and sat or napped there twice.


He struggled with coughing and trying to clear his throat again, wanting help, wanting the Bi-PAP mask but that's for sleeping now.

A happy surprise tonight: Papa arrived to stay overnight in the room with Joel! I'll be staying in a sleeping room on another floor. Each of these beds are single. We'll visit with Joel tomorrow in his room.

Goodnight friends, thank you for your prayers and words of encouragement, for meals for the family and interim babysitting!!!!

Day 15; Three weeks in Children's

It was a very odd day. Joel started out sleepier, he had some physical therapy this morning then he was up in the chair for a while. He "walked" from his bed to mine twice today. Once to talk to Lora and Timmy on the phone, and once to get his Biology book (more quickly).
His X-rays were a little worse again this morning, the nurse showed me yesterday's and today's together and explained them some more.
His surgeon said he won't be going home in the next four days. Coumadin still not budging INR, even at that high dosage.
Pacer wires were pulled out today by someone in charge.
Around 2:00 when we had lunch, Joel started acting very strange, calling one word over and over, picking at and biting his fingers and pulling at the hair on the top of his head.
There was a surgery in the next room which took most of their attention this evening.
Finally someone in charge chose to give Joel a dose of Versed and that worked about an hour till he'd eaten part of his supper, and then he got weird again, crying out "waa! waa!" over and over again, and not responding to our questions.
Now he's had a dose of Ativan (which they'd also taken him off of) and is asleep.
Praying for all the little children here.
Love,
Dolores

14 Days = Two Weeks

X-rays this morning were better. The intensivist said there was very little effusion (fluid) in his lungs according to yesterday's ultrasound. What he has is atelectasis (at-a-LEK-ta-sis) where the alveoli in the lungs collapse and can't get air. Sometimes caused by fluid lying on the alveoli. He needs to take deep breaths and cough well. I'm sure it hurts him to cough and he's not coughing deeply enough; but part of that has to do with low tone common with Down syndrome.


I told her I felt that Joel's attitude was depressed yesterday and this morning, like he was giving up because "nobody will feed me, only beat me up". She ordered simple foods and fun for Joel today.

He had physical therapy!


played a game on the iPad which required two hands!


got to turn pages in his favorite kind of book: a biology textbook!






and drew on the windows.








Had to put new NG in again today...not eating enough yet to get rid of it. Still needs and wants mask or canula, without it his SATS drop very low quickly and he will put it back on himself it. Bi-PAP Mask is used when he's lying down or sleeping now.

He ate better tonight. Had an overall busy day and may be more tired again tomorrow?



The focus in Joel's treatment now is obviously on tuning up his lungs, plus trying to get his INR/PTT (blood thinner level) to where it needs to be, because it's still way too low. Coumadin upped to 12 tonight. No current danger of blood clots around new valve as he's also still on heparin. Stopped the Vancomycin today.

New home blood monitor is being applied for but will take at least 12 weeks to get, so Joel will have many trips to the hospital lab for monitoring his blood thinner after he's home again. Investigation begins into old home monitor as it's been giving us incorrect readings and other people out there are depending on that same kind of monitor. The clotting in Joel's valve was very serious, besides the valve being too small because he'd outgrown it. It shocks me to think that he could have had a stroke and even could have died! But he didn't! I have to praise the Lord each time I think about it!


Thanks for your comments on the blog or in emails, I love to hear from you. If you've asked me questions and I havent answered them, it probably means I don't know the answers yet.
Love,
Dolores

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.