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.

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.

Joel Day 5 After Surgery

I was very surprised to walk up to Joel's hospital room this evening and see him wave "hi" to me...with his foot!! What a character! I had to laugh! Mike says he waved at the surgeon that way today too.

He's better tonight. I'm SO RELIEVED to see him more awake, responding to questions with a nod or a mouthed word--and the word is mostly "water". He can only have his mouth swabbed with sponge sticks, but he quickly drinks from it like a straw.

He's being fed 5 ml of Pediasure per hour by NG since 4:00 pm and it's gone well so far. The room is cool and there is a fan on him because he still has a slight fever.

The goal is to extubate him (take the breathing vent out) within the next two days. The prayers are working everybody, keep it up!
Love,
Dolores

Day 4 after surgery, evening update

Joel had a good morning and then somehow his vent was suddenly out, almost like he'd coughed it out; Mike called the nurse from the next room and the room filled with help to put it back in. They had to sedate him again.
The chest drain tubes are now out, but the pacemaker is back on. He also has Tracheatitus with MRSA component; on antibiotics. NG feeding tube going just past his stomach for meds and possibly feedings. It's the thin one, replacing the bigger one he did have in. Good night all, we hope tomorrow brings more strength and further healing! We are keeping faith.
Love,
Dolores

Good Morning Joel! Happy Valentine's Day!

Joel's lungs are both inflated! He's currently off the pacemaker! My heart is overflowing with gratitude to the Lord!! Thank you to all who prayed as I requested, that God would blow life into his lungs and heal Joel!
Here is a smile from our boy this morning! Papa says he's a little more awake now.

What a Happy Valentine for us!


And here are the beautiful roses that my husband left for me to find when I returned home on Saturday night. He loves me. I love you too, Mike!!!

Day 2 after surgery

Our boy is still sleeping. He rouses a little now and then if he hears my voice  or if I mention Papa, so I know he's hearing me, but we don't want him too agitated so I mostly keep quiet. He had some trouble with one lung when the vent moved a little inside him this morning so they had to reposition it according to an x-ray. There's a small leak in the vent somewhere this evening.

The echocardiogram today showed that his heart and new valve are functioning well (although he's still being paced), but he's getting antibiotics now for his lungs. The surgeon said his lungs were pretty bad before the surgery so it may take a while.

He somehow scooted down till his hand could reach the vent and tried to pull it, he was drowning in fluids, the monitor and I yelled for help and the nurse came in and got him suctioned, I've never seen such purple in all my life!!! I'm telling you this is a constant life and death drama.

Mike and I are trading places tonight, thanks again everybody helping! God bless Joel and little Triston Hicks, Sherri's grandson who had brain tumor surgery the same day as Joel's heart surgery. They're both needing angels.

Day 1 After Surgery

Today Joel had many challenging moments. Many times during the last couple of days my knees have felt like buckling.

Joel's still mostly sleeping, but one eye is partially open most of the time. He's still on the vent (pulled it once during the night last night and goes for it each time he starts to wake up, so his hands are restrained.) He still coughs silently (he has no voice with a vent in) and then has to be suctioned, that's very scary!! He must be watched constantly.

He hears our voices and recognizes when we're near him. He even smiled around his tubing once, when we asked him to. The machine is still doing nearly all of the breathing for him and his heart is still being paced. But when we suggested turning on "Monsters vs. Aliens" for him, he opened BOTH eyes and turned toward the TV! We turned it on and put the remote near his head so he could listen to it as he dozed.

The goal is for Joel to be able to come off of the machines and be awake. Thankfully, he's still in there!

Goodnight for this day.
Love,
Dolores

Joel's heart

Many of you know, but to those who don't...our Joel is in the hospital. He's been sick all of February, transferred to Children's on the 4th; mitral stenosis=Congestive Heart Failure.  He had surgery to replace his artificial valve with a larger one on the 10th. The surgeon also found clotting around the valve, and said it was a miracle that Joel hadn't had a stroke! This is scary and makes us feel so completely dependent on the Lord who holds our hands and hearts, because after all we could do...even with giving Joel Coumadin regularly...this clotting still happened...but Joel was kept safe until he could have surgery and the doctor so carefully, piece by piece plucked that material from his valve and replaced it with a new larger one. Joel's heart function with the new valve is now good, but his lungs are "still pretty beat up". He's still "sleeping", on vent and pacemaker. He hears us, but we have to not let him get too agitated. Your prayers for Joel's recovery are much appreciated!!! A short picture history below...

 Papa waiting during surgery. Joel went to Operating Room at 8:00 AM and we finally got to see him again at 7:15 PM.

A blizzard and a sick boy

Tuesday, February 1st the snow came down like crazy. I worried about keeping the kids warm enough and prayed the power wouldn't go out. God blessed us and the power stayed on! Papa, Gabe and Lora (plus the neighbor with a plow on the front of his truck) shoveled the porch, walk and driveway as much as possible in the wicked cold.

Joel didn't go out but started getting sick again, coughing until he'd throw up, and sleeping a lot...but only sitting up. At first I thought it was his asthma, but it didn't sound the same.

Today I realized he needed to go to the E.R. The other kids have had the stomach flu and colds, but this is different. Joel is coughing and gagging almost constantly, won't eat and is only sipping water.
Papa took him to the local ER tonight and Joel was admitted.