Easter Seals and Autism

Two of our children have been to Easter Seals and after long, cumulative efforts and evaluation by an interdisciplinary team, Ella and Joel have been officially diagnosed with Autism. We have suspected for several years, but to have an official medical diagnosis is helpful...and hard.  We hope that this will help them in the schools as well as otherwise. There is no more just wondering and guessing, we know. God, give us the grace to accept the things we cannot change. And please, if you see fit, bless us with an Autism service dog!
http://www.4pawsforability.org/dream.html#EllaWynkoop

A SPECIAL REQUEST FOR ELLA

You all know where my heart is. You know I love these kids; my kids who are grown and their kids... and our  little sons and daughters with Down syndrome. This is my mission in life. I love them all, and rejoice each time another little one with Down syndrome or other special needs is loved and embraced by a family!

I talk to people wherever I go, like a saleswoman, only I'm selling LIFE. I tell them about the children waiting internationally who, if not found and adopted will die in mental institutions and give them Reece's Rainbow's website: www.reecesrainbow.org. 

I tell them about babies needing adoption in the United States who often will be aborted if families aren't standing by waiting to adopt them and the website for the National Down Syndrome Adoption Network (Robin Steele) at www.ndsan.org

I've struggled with the fact that I need to fundraise for another important thing at this time... because nothing seems as important as saving lives... but this is also about saving lives in another way, so here goes:

We are fundraising for a Service Dog for our children. Especially for Ella, because besides the Down syndrome, she also has classic symptoms of autism.

Going out in public has become more difficult because she will struggle to get away and dash into traffic. If she has an Autism/Multipurpose Service Dog, this would give her more independence as well as safety. She could be tethered to the dog out in public, allowing her a little more freedon (her hands free) but she couldn't get away and run into danger.  This would allow our family to go out with more peace of mind. The dog would be trained to give comfort to the children in their many doctor's appointments. Stimming behaviors and meltdowns could be interrupted with affection from the dog. Having a Service Dog would also allow Ella to meet peers, because children would be interested in the dog, and be more likely to approach her. As she has no speech and her behavior is different, Ella doesn't make friends easily so children meeting her because of the dog would be a great help to her!  The dog will be with her at all times and she will gain a best-friend attachment and learn nurturing. Because we must constantly guard against Ella or Joel wandering off, the dog will also be trained as a tracker.  Can you imagine the peace of mind this could give us?!   

Please go to the website of 4 Paws for Ability at www.4pawsforability.org  to look around and read stories of other children who have already received their service dogs and how it works.

And please, if you can, donate to 4 Paws for Ability, Inc. for a service dog for Ella! The dogs are very expensive because they are so highly trained, specifically for the child(ren) they will belong to.

Please make checks out to:  4 Paws for Ability, Inc.  Write Ella Wynkoop in the memo!


Mail to: 4 Paws for Ability, Inc.  253 Dayton Ave, Xenia, Ohio, 45385.

And GOD BLESS YOU!!!!
                                   

Sweet Angel waits and waits...

Please go to this blog and read about Liliana. She's a precious little girl who urgently needs help to come home quickly to be healed! This is real, I know the person who took her pictures.

http://www.nogreaterjoymom.com/2011/08/because-it-is-our-problem.html

I can't get her off of my mind or out of my heart. Please let her into yours!

Love,
Dolores

UPDATE:
My heart is full in the marvelous news that this child's adoption fund was FULLY FUNDED in 24 hours from the date of the above blog post! She now has a paper-ready family committed to going through the process to adopt her!!! Thank you Heavenly Father!

Note: There are other children in similar condition needing families quickly! Go to www.reecesrainbow.org and visit the waiting children available to older parents or large families, link on the sidebar of that page. Of course you can view all of the children waiting on their site. I'm sure you'll find one that touches your heart.

THANK YOU!!!

Another close one for Joel!

Those of you who are  on my email list and facebook, know that Joel had another serious, long hospitalization in May/June. He began breathing more noisily, fell asleep during home tutoring and then that night complained of pain in his back and acted like he wanted to climb out of his skin. He was intubated by the life flight team at the ER in our town and then transported to Children's by ambulance because it was a very stormy night and the helicopters couldn't fly in it.
The doctors at Children's stood around his bed watching him for hours. The nurses and respiratory people came and left round the clock, hauling big helium tanks in and out. I'd never seen his ICU room so busy, not even after his heart surgeries. They used treatments I'd never seen before. I knew it was bad. Many many Prayers went up! I was ready to let him go if that was God's will, but every now and then I'd find myself crying and would have to leave the room.

His birth family came to visit him. Finally after a few days on the vent, he turned a corner. Then he began pulling things and we knew he was back. Joel was on the vent for 9 days, the longest ever, even after surgeries he was on the vent only 6 days and we thought that was long enough! He was in the hospital for three weeks. The doctor that had stood by him the first night told me later that we'd almost lost him. I knew.

Joel is doing much better, and is now back in school. He has an oxygen concentrator there, with tubing and mask, as well as his nebulizer and meds, to be used as needed. The teacher is intimidated by this but the school nurse is ready to help.

We also have the blessing of night nursing for Joel now, so that he can be  monitored closely as he sleeps. The nurse sits in his room and checks him whenever his pulsoximeter alarms for breath or heart rate. She replaces his Bi-Pap if he tries to remove it. She administers his night and morning meds and charts everything.  At first I was worried about having strangers in Joel's room all night, but now I feel alright because I have become aquainted with these nurses and know that I can sleep without worrying about Joel. We'd had many, many sleepless nights this year with Joel.

I express heartfelt gratitude for the gift of this child, that his life has continued and that he continues to make us smile and chuckle, through it all.

I have to repeat the story of something he said during this last hospitalization. It was after he'd been in big trouble with the nurses...he'd coughed up his vent one day, pulled his NG-J tube three times...and that morning had pulled his Pic-line. He was on their Naughty boy list. Then I heard him talking to himself as he turned the pages in his big dog book, "Joel, you okay?" he asked. And then answered himself, "You Jesus' boy."

I laughed, I cried. From the mouths of babes!

We're home!

With our pediatrician's permission, Joel and I came home. We're all happier being together again! Joel is much stronger than he was at release from the hospital three weeks ago. It's been seven weeks since his surgery. We can't keep him in a bubble forever and she said he will get sick, that's to be expected, but at least now he should be better equipped to fight things off. He's not ready to go back to school yet and will continue to have a tutor for short periods per school day and speech therapy once a week at home, until he's through recovery. Part of the reason he can't go back to school yet (besides having decreased stamina for a long day) is the continued quest for his blood thinner to be at the level where it needs to be.

The oxygen still runs through his bi-pap at night for now. His sleep study showed that he was having 20 episodes of sleep apnea per hour, which is severe! With the bi-Pap, that number has been reduced to about 2 1/2 episodes per hour, which they're pleased with at the sleep lab. He will have bi-annual visits there. It seems the prayers have helped him in several ways!

Oxygen

Joel is going for periods of time without oxygen, still requiring it when sitting quietly or sleeping.




I'm pleased that he's very talkative when sharing things of interest, like his "Family Book" that his sister Milly made and sent to him. He LOVES showing it off and naming each person! He can tell me whose house each picture was taken in, "MY house!" or when it was taken: "Joel's birfday!" And with some he'll give other captions, like "Milly Christmas hat, Christmas tree, Shrek Story PRESENTS!" and "Marshall chocolate face", and "Graf is like Prince Charming." Joel likes to place each person he knows as a character from his favorite movies.

We're homesick. I feel so terrible about missing ALL of these WEEKS with my other babies! Lora had barely been home and then she was thrown into life as a mother (sorry I'm missing this time with you too, Lora, and thank you!!!) plus she's in school full time...Gabe is helping when he can, (thank you Gabe!!) plus he works full time...and friends from church are doing the care taking when Lora and Gabe are both gone and Mike's at work (Thank you, friends!!!).

The little ones are getting sick; they have runny noses again (frequent sinus infections) and Mike said Ella was croupy last night. This is why Joel and I can't be home yet. I'd hoped for us to go home by this coming Monday, but maybe at least by the end of March?? I'm experiencing daily jaw pain and headaches...maybe from stress? We've decided to take some of the pressure off by waiting another year to sell our house/buy another. It makes me sad to miss more time with my dad, siblings and cousins. I always worry that it'll be too late! But we need more time to heal, regroup and be ready for more big changes.

We'll keep praying! I'm praying for many of you out there, that also have big trials in your lives right now. My heart goes out to you!

Helicopter vest

Joel's Vest treatment sounds just like a helicopter. Here's how he looks in the vest at Grammy's---doing a breathing treatment at the same time. The vest fills with air and then the tubes send fast bursts of air into it to shake his lungs free of mucous so he'll cough. The compressor unit itself looks like a large boom box. Joel's still needing oxygen in decreasing amounts but especially at night. His lungs sound great in the mornings and then his breathing gets rougher as the day wears on.

We've had a few visitors, including a wonderful woman who cut Joel's hair, his school tutor, home health care nurses and others whom he remembers and loves. Aside from grieving over the loss of home and family as he knew it, he's adjusting well to life as it is. I'm so pleased to see that he does remember people and things that he's learned at school. Our boy can read! And he can count to 50 out loud and identify many numbers!

Lora is giving her report on her mission to the high council tonight. I would've loved to have been there for that, but those who could go, are there.

Time for Joel to go to bed, goodnight everybody!

For Mike

Separated by necessity,
the breach against our will,
we work to reach a common goal,
the needs of all to fill.
The extremity of circumstance
wears upon my strength.
And even though it could be worse,
I hope for lesser length...
of time apart--I'm missing you!
I'm wishing to
be in your arms again,
and able to face every day
with you as it begins.
My darling one, my love, my friend,
when will we be together
when each day comes to an end?
May all go well and healing time
pass quickly until then!

by Dolores

"We ARE family. You tell us what to do and WE'LL get it done!"  Disney's Ratatouille.

A visit from a VIP and World Down Syndrome Day

Over President's day weekend while Joel was still in Children's, we had a special visitor from New York. Glaucio lives on Time Square where he is able to simply walk to his office at the Brazilian Embassy. He came to meet us and to visit Nauvoo as Lora's guest. Lora brought him to the hospital that Saturday morning, where we visited for a few moments as Joel slept. On Sunday, those of us at home had a very interesting conversation during and after dinner. I learned something of Brasil. Someday I would love to visit that country.





We decided that Ella most likely has some Brazilian ancestry, for several reasons... and because she looks somewhat like Glaucio and she loved him immediately.

Glaucio had an older brother with Down syndrome who died as an infant...most likely of cardiac problems... in his mother's arms. So sad! At that time they didn't have the marvelous heart surgeries that we have now. It was interesting for Glaucio to meet our children with Down syndrome and to have them come sit next to him. He said it was "eye opening" to be here and experience what they are really like in person.

He enjoyed his time in Nauvoo and Carthage, going to the temple and the other historical places.

Here is a letter Glaucio sent today, with a link to a Brazilian song and video montage in honor of World Down Syndrome Day which is on March 21st (3 of the 21st chromosome make Trisomy 21, or Down syndrome). It's so heartwarming to me that our new friend is still thinking of these kids. Hugs to you, Glaucio! And thank you to Patricia!

Be sure to go to the URL to hear the song and watch. The children in Brazil are beautiful. Enjoy!
~~~~~~~~~~~~~~~~~~~~~~

Dear Dolores,

A friend of mine, Patricia Almeida, is deeply involved on the Down Sindrome movement and activist. I told her several times about your wonderful family and the marvelous experience to be with you all, specially with the kids. A well known Brazilian musician, composed a song about the Down Sindrome, his name is Lenine and the song is available in the link below, sent it to me by Patricia. She remembered about you and asked me to share it with you. It's a pretty song.  The subtitles in English for the lyrics is available by clicking the English option on the CC bottom, on the down in the right hand side on your screen. Hope you enjoy the song, called World Down Sindrome Day..

http://www.youtube.com/user/CanalFBASD

Glaucio

Update on Joel

We took Joel to the hospitals for several appointments yesterday. He moved very slowly, with oxygen, sometimes in a wheelchair. Here are the results of those visits:

INR: 7.8. TOO HIGH! Blood is thin. Surgeon's office advised us to let him move slowly and cautiously. We continue to follow strictly the doctor's orders on blood thinner; it's still early on in finding accurate dosages of Coumadin after his latest valve replacement. The surgeon's office calls with orders from the surgeon each day, after they receive the results from that morning's blood draw done at the hospital lab.

Joel is becoming accustomed to the frequent lab draws again; always sitting up and holding Papa's hand for support. This morning he spelled his last name out loud for the technician, "W-Y-N-K-O-O-P"! He also answered how old he is, "Ten! Janary!" Afterwards, he always walks into the front office door and chooses stickers for his sticker book. They're all so good to him!

Joel's thyroid level was checked yesterday and was low; endocrinologist appointment resulted in a higher dose for his hypothyroidism.

His lungs look a lot better, continuing Pulmicort in nebulizer 2 X Day, Albuterol in neb 3 X Day. Continuing Vest treatments 2 X Day for 20 minutes each. Decreased Lasix to 2 X Day, Aldactone to once; not at night. Weaning off Steroids and tonight is last dose of Ativan. We can begin weaning him off the oxygen, according to the surgeon, making sure his sats stay 92 or above. Spot check his sats. I will still allow the monitor to run continuously on him during the night. He's continuing to sleep in the Bi-Pap mask at night.

The surgeon recommends that "Joel should stay at Grandma's house for two to three more weeks [because of the other little kids' frequent respiratory illnesses] as staying out of the hospital insurance." We will see the surgeon again in four weeks, so ultimately it will be Joel's regular pediatrician who makes the decision. He will be seen by her tomorrow, but not for that particular decision...yet.
Joel has been more talkative the last few days. This morning he's been moving about acting out a movie, more like the old Joel.

We're so grateful for his continued recovery! Words cannot express our gratitude to God --and to our friends and loved ones for their prayers to the Father on Joel's behalf. Help continues to be needed at home and those that are helping are true angels to our family!

Thursday

Joel slept only two hours during the day today and had a huge appetite. They say it's the steroids causing the increase in appetite.

Papa took us to the hospital lab this morning, for Joel's INR draw. Later, after he'd dropped us off at Grammy's, Joel asked, "Where my house? Where YOU house?" then answered himself, "Papa lost it. Papa lost Joel's house. Papa, you NAUGHTY!"

Joel and I enjoyed some hugs tonight and a story from the scriptures helped him fall asleep. So happy we have this little man. We miss being with all of the family.

Wednesday

There have been several times during the past month+ that I've awakened at night and wondered, "Where AM I ?!"  I'm sure it's been more confusing for Joel.
We're staying at Mike's mom's since his second release from Children's Hospital. He's on steroids, which lower immunities, so any visitors must be healthy.
Joel's been sleeping a lot. He stirred a little during a nap today and said aloud, "Alright Joel, let's go home!"
We're very close to home so that Papa can stop in and bring us needed items. That helps a lot.
Joel is wearing a Bi-Pap at night. He's getting a little better every day! This is a huge blessing!

Monday

This was a day full of arrangements for Joel's discharge. Things should go smoother this time as far as the equipment being provided for him. I'm especially grateful to our professional friends: our kids' physical therapist for support and advice and our good pediatrician for getting things moving!

Joel is having a sleep study tonight, Papa is still with him. The picture looks pretty scary but most of the wrapping is just so that he won't pull wires off.

When morning comes, Joel and I will move to Grammy's (Mike's mom's) house where I will room with him to make sure he always has his oxygen on his face. We will stay there until he is off of the oxygen and past danger of catching illnesses from the other little kids. Thank you, Mom!!

Timmy and Ella will start back to school in the morning. Ella is much better again, working through yet another round of antibiotics.

We'll continue to need help with the three youngest children Tues/Weds/Thurs during the times that Lora is in class and Gabe and Mike are at work.

More prayers were answered today! I'm feeling good about this.

Joel today and tonight

Joel looks better today! He took a couple of walks to the hospital playroom with Papa and Uncle Kevin and Grammy. Here is a picture of him wearing the bi-Pap, ready for sleep.
Goodnight, Little Mister!

A song about blessings

Here is a beautiful song that my friend shared with me; thank you Shelly! May it bless all my friends.



Blessings
Artist: Laura Story
Album: Blessings

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
As long as we have faith to believe

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

TULIPS!

Mike brought me tulips with the groceries early yesterday. This means that somewhere, outside (yes Dolores, there is an outside world), somewhere--- it's Spring!

Two days later...

Joel has been struggling, especially at night. Keeping the canula or the mask on his face during the night and having the proper home medical equipment to monitor him has also been a problem. On the doctor's advice, Gabe and I took Joel to the local ER this afternoon and were there more than five hours. It was decided that he needs to be on the Bi-Pap at Children's. Mike got off work in time to ride with Joel in the ambulance to Children's Hospital, where our boy is now in bed in Intermediate Care. I'm sure he just needs a few more days.

Feb 3 - March 3; Not your typical month

I'm going to share something very dear to my heart here.

In spite of our "best laid plans", we'd missed something important. I had even written out a list of important things that needed to be done before we could ask the Lord to light the way for our new journey....but we missed a big one that HE had for our list: Joel needed his heart fixed. We didn't know; now we do. It took a whole month in the hospital and will take at least another eight weeks recovery and follow up before we can check that one off of the list. But gratefully, we will check it off.

Each time Joel has been hospitalized for surgeries or other serious illnesses, there has been a time during his stay when I feared we would lose him. It's like a fear that comes into my throat and stops my speech, stops my heart. I've learned from these experiences that beyond all that I and the doctors and nurses can do at these times, I have to prayerfully, mentally and emotionally hand him over to God. He is the best parent of all, He knows the plan for Joel's life, He is ready and waiting to help; He is the Master Life Flight operator. (In spite of my limited vision, God and his angels write between the lines to fix things.)
This hospitalization, there were a couple of those really scary times; first, the day of surgery. My help came through faith in a blessing given to Joel that morning, assisted by the heart surgeon; we had the assurance that the doctors would be guided and Joel's heart would be healed.
Taking into consideration all that his surgery entailed (!!) and how his heart has recovered, this blessing was fulfilled.
The other time we had to completely hand him over to God was the night of February 23rd. Joel was so tired and seemed so depressed, struggling with his lungs. He looked at me differently, meaningfully, with such tired, sad eyes around his bi-pap mask that I immediately felt moved to say aloud, "I love you Joel! I love you! It's okay for you to sleep, it's okay for you to rest now."
Mike and I communicated earnestly that night, encouraging each other to be strong in faith and to trust him to the Lord. From the beginning, Joel's life has touched many hearts. I prayed as always, for God's will to be done...and I mentally placed Joel in the Lord's arms.

Now that we're home again, we give thanks for the unusual month that was just plucked out of our year...that our plans stopped so that Joel's heart wouldn't. I know that there is much ahead, Joel's lungs still have a long way to go to be well and all of the children have many needs. I pray for God and his angels to continue to minister to us and ours, to fill in what we don't know, to remind us what we've learned and to help us understand.

My love to all who followed, prayed, fasted and participated with us in this chapter of our lives!

As we pulled out of the hospital parking garage with Joel buckled into his car seat this evening, Joel told Papa, "RUN!"

Love,
Dolores

20 days post

Today was more of yesterday, except that now we know that Joel's release from the hospital is scheduled to happen tomorrow (Thursday, March 3rd) late afternoon. It was decided that his lungs aren't getting worse, but that he must feel worse at night because of the activity during the day. He'll have the swallow and sleep studies on an outpatient basis. We'll be back and forth to Peoria for a while for follow-up appointments.

Tonight while Joel was waiting for the breathing treatment he'd asked for, he put his hands over his eyes and asked his new nurse, "Where Joel?" and then said "Kittyboo!" so she'd pick up on the fact that he was playing peekaboo with her. She picked up and said, "Where's Joel?" back at him. He replied, "I don' know." So we acted like we couldn't find him either. Then, since we couldn't see HIM...he hid his mask. Lol, funny kid!

Papa will need to come get us tomorrow as Lora will be in school and Gabe will be at work when it's time to leave the hospital. We should be home by suppertime tomorrow.
Thank you and Praise the Lord!

19 Days

It's March now so Spring is coming!

Joel's X-rays were the same this morning but his INR was 3.9. He was given 5 mg Coumadin tonight. He had fun punching the balloon and playing bean bag toss with the physical therapist this morning. He ate more today and moved about easier. This evening he sounded worse again and I'm suspecting that he's either aspirating when he eats/drinks or it's asthma. I keep asking! He's so miserable trying to breathe at night. He was given an Albuterol breathing treatment tonight along with his Pulmicort. A new swallow study is supposed to happen tomorrow. They're having me prepare and give all of his oral meds in preparation for his discharge later this week; they expect to send him home on oxygen.

Tonight he asked to talk to Papa on the phone, and asked him to come over again. Now he's calling, "Dad!" and replying for him, "I comin', my boy!"

Prayers... and sleep, soon I hope. Goodnight!

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.