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!