Saturday, November 10, 2018

A good day of remembrance

Pictures are from yesterday, but they are of things present both days.











It was a good funeral. Comedian Tim Hawkins jokes about putting the 'fun' in 'funeral.' I'm not sure about fun, but today was an enjoyable day. 

I got to share my heart as far as what I have learned about God's love through the loss of my son. The short version is that I learned just a little more of how great a love God has for me. He went through the loss of his Son, voluntarily, to demonstrate His love for me. I needed that, and His love drove him to make that sacrifice for me.

I got to worship with friends and family as we sung together "Higher Ground," "Saved, Saved!," and "I'll Fly Away." I got to sing a duet with my son, who was also playing the guitar as we sung "To God be the Glory," with everyone joining us on the last chorus. We continued our worship as my brother shared his heart about Timmy's verse - Psalm 9:1: "I will praise thee, O Lord, with my whole heart; I will show forth thy marvelous works." He then shared my heart, taken from this blog, of several of the marvelous things God had done in Timmy's life.

I got to say good bye to my son. My last kiss on his forehead felt completely wrong, but yesterday and today was the longest I have gone being near him without giving him a kiss. Knowing that his life has preached more truth than I have in my years as a pastor, I tucked my preaching Bible under his arm before setting the lid back on his casket.

I got to enjoy sweet fellowship with family at a luncheon provided by the church Jen and I went to and served at when we were first married. They served us well and we enjoyed our time with family immensely.

I guess the big wonder people have expressed to us is whether these events will turn us bitter toward God or deepen our faith. Several have commented, but it is not something that worries me. How I respond to life is a concern I always have, but not a worry. As my brother shared today from this blog, we made our determination how we would respond a long time ago. An image a friend shared with me today is the image of a sailing vessel. You can observe two ships, using the same wind to go in different directions. A poem by Ella Wheeler Wilcox explains it:

But to every mind there openeth,
A way, and way, and away,
A high soul climbs the highway,
And the low soul gropes the low,
And in between on the misty flats,
The rest drift to and fro.

But to every man there openeth, 
A high way and a low,
And every mind decideth,
The way his soul shall go.

One ship sails East,
And another West,
By the self-same winds that blow,
'Tis the set of the sails
And not the gales,
That tells the way we go.

Like the winds of the sea
Are the waves of time,
As we journey along through life,
'Tis the set of the soul,
That determines the goal,
And not the calm or the strife. 

The winds will blow in life. I hope the winds blowing in our life never blow in your life, but I can assure you that winds will blow in your life. Which way will the winds blow you? Is it really a mystery we can't know ahead of time? The answer is that we can predict where the winds will take us. The direction of the wind, the strength of the wind, and the suddenness of the wind have no bearing on our bearing. The only thing that makes a difference is how we set our sail.

So, I don't worry about it. But I conscientiously set my sail. And I invest in people and hang out with people who have set their sail in a similar way. I know that there are many in my life that are standing on the shore, holding ropes, to maintain the position of my sails. So what will happen when the next wind hits me? The wind will take me where I have pointed myself by the set of my sails. 

If you feel like life has you along for the ride, as if you are not in control of where you are headed, as if you don't know where you are heading - stop drifting around, and grab a hold of your sail.

Where will the wind take you?

Better check your sails.



Friday, November 9, 2018

Oh, I Have Been Blessed!

I am totally not ready for today, nor am I ready to put off today to another day. 
Such is our state for now.
Looking forward to seeing many friends and family, but visiting hours today and the funeral tomorrow seems to make things more final.

Still, I can't help but think how blessed we are. 
And this song has been on repeat in my mind:

"I Have Been Blessed"

"When He walks among us, all that He does, 
All of His mercy and all of His love. 
If the pen of a writer could write every day 
even this world could never contain 
just how I've been blessed 
The warmth in the winter, the flowers in spring, 
the laughter of summer, and the changing of leaves. 
Food on my table, a good place to sleep, 
clothes on my back and shoes on my feet. 
Oh, I have been blessed. 

I have been blessed, God's so good to me, 

precious are His thoughts of you and me. 
No way I could count them there's not enough time, 
so I'll just thank Him for being so kind. 
God has been good, so good. I have been blessed."

These pictures remind me of so many blessings, too.



































Thursday, November 8, 2018

What Happened?

Picture of Jen in bed with Timmy about an hour before he passed.

Part of me wants to wait to share anything more, but the other part of me wants to write before I start forgetting. So, what happened?

Timmy had a cough and cold like symptoms a couple of weeks ago. Nothing major, we got him checked and his lings were clear. He recovered, but last week started having more congestion again so we took him in to be seen. The diagnosis was that his lungs were not clear and it was either due to his heart failure (which was Timmy's constant state) worsening or pneumonia. That was last Thursday. He improved on Friday, but on Saturday Jen noticed his eyes were puffier than usual. Sunday morning, his feet were swollen. Swelling in the face and extremities are signs of heart failure. The symptoms that we treated with the medications Timmy was on (diuretics, for example). We called his cardiologist Sunday morning prepared to take off for Rochester. 

His cardiologist, knowing that our desire was caring for him at home, made suggestions as far as increasing a medication and seeing if that helped. We breathed a sigh of relief and figured things would improve based on the recommendation making a lot of sense. They did not. We called again and he suggested that we could see him in the morning, or go to Rochester then or in the morning. We decided to finish of Sunday's responsibilities, but make a "go or no-go" decision at 7:00 after the evening service at church. No improvement was made, so we called the cardiologist again and he told us he would call ahead to Strong's to have them waiting for us. We left shortly after 8.

We arrived around 11 to the ER at Strong's and they began their evaluation and started drawing blood and taking x-rays and asking all the questions to find out what Timmy, who left 2 years ago, was doing. By 4 am we were brought up to the Pediatric Cardiac Care Center - Timmy's home for 2 months a couple of years ago (almost, the PCCC moved to a new location in the hospital, but it still felt like home). We also met with the cardiologist that admitted Timmy 2 years ago in the process. Arriving at the PCCC, we were greeted by Erin, one of Timmy's nurses from his first stay. It really felt like home very quickly.

They worked to get Timmy's vitals and start figuring what to start with. IV fluids were started, more tests run, and monitors were hooked up. Also, by this time, they had Timmy on 6 liters of oxygen flow (at home we had him on 2-2.5 liters) and his oxygen sats were staying on the low side. 

By morning, Timmy was resting a little, and we waited for rounds. at this point, Jen hadn't slept since a small nap Sunday afternoon, and I had gotten a few short naps in through the night. At rounds, they gave a run down of Timmy's condition and what they expected. They were going to give Timmy some valium to help him rest and not be agitated, and it worked well without knocking him out. It looked like things were settling in as they did last time, so I started to work on getting Jen settled by finding out about the Ronald McDonald House and all. We got her moved in in the afternoon, and picked up some food for her while Timmy rested and went back to the hospital. Jen knew the routine, so I headed for home around 5:00 with the promise of a good night's sleep. 

I got home and started getting ready for bed, but got a message from the hospital. I called them to find out Timmy wouldn't settle, even with another dose of valium. So I called Jen and let her know. She had just gotten back to the RMH and showered, ready for bed. She went back to the hospital, and I went to bed, knowing she might be in for a long night, and the best thing I could do was get my rest.

When I woke up and showered Tuesday morning, I checked for messages from Jen. There were 3 messages from overnight. Just updates while things were fresh. They kept turning up Timmy's oxygen, but his sats kept falling. He wasn't sleeping well. Jen wasn't sleeping either. I called, and Jen put on Dr. Powers, who was in the room, to give me an update. So it was time to go back to Rochester. I arrived by 11 Tuesday morning and updates and decisions were made very quickly. Because there was nothing they could do to keep his oxygen sats up, it was clear that we needed to transition to comfort care. By 4:00 pm, Timmy had taken his last breath. Jen and I were beside him in his bed, singing some of his favorite songs and holding his hands. 

His heart just went down hill very quickly. 

Some of the blessings along the way:

If we had waited until Monday morning, we would not have been able to handle transporting Timmy to Rochester, and he would not have had the same comfort and care since the VNA and palliative care were not in the picture anymore.

We prayed for wisdom and God made the decisions very clear. No second guessing, no doubting the choices we had to make.

The arrangements with the Ronald McDonald house were made quickly and easily. (at least from our perspective - Liz at the hospital may have a different story)

Jen was provided a meal tray in the hospital so she didn't have to leave Timmy Tuesday morning.

So many friends from our last stay were there to encourage us and be a blessing.

The new nurses on Timmy's floor were excellent and gave him great care and were super helpful to us as well.

Great care and doctors willing to go the extra mile with Timmy at our local practice, in Buffalo, and in Rochester.

A fresh baked chocolate chip cookie Tuesday at the Ronald McDonald family room on a day when it was really nice to have.

Safety in making two round trips to Rochester in under 3 days. Even when several accidents were seen.

Family & friends from all over that kept letting us know they were praying for us through those 2 days of uncertainty.

Yes, we have been blessed.


Wednesday, November 7, 2018

Arrangements


Timothy Devlyn Hadley, 2, lost his life-long battle with congenital heart disease on Tuesday November 6, 2018 in Golisano Children's Hospital, Rochester.
Timmy is survived by his parents Kevin and Jennifer Allen Hadley of Niobe, NY; siblings Austin, Larissa, Robert, Jeremiah, Benjamin, Abigail, Jonathan and Joseph Hadley; grandparents Michael and Pamela Allen of LaGrange, IN and Lyndon and Lynda Hadley of Cherry Creek, NY; great grandparents Robert and Carolyn Brown of Rushville, IN and MaryEllen Emmott of Gerry, NY.
He was preceded in death by two infant siblings through miscarriage.
Timmy brought joy to all who knew him. Loved by people around the world who followed his story, but especially those who made a difference in his story. Besides his family and friends, Timmy was loved on by his nurses, doctors and support personnel at Golisano Children's Hospital and his local medical personnel, as well. He will be missed by his three great therapists that pushed him to work at his best in his physical development. His church family at the Niobe Baptist Church will feel his loss as well.
Timmy's life and death were a testament to God's love and power. At six months old, he was not supposed to survive more than a few months. The last 2 years have been an unexpected blessing for us all to enjoy.
The funeral will be held at 11 am Saturday in Bethel Baptist Church. Pastor Donald Hadley will officiate.
Burial will be in Grant Cemetery, Niobe.
Friends will be received from 2-4 and 7-9 p.m. Friday in the Lind Funeral Home.
You may leave words of condolence at www.lindfuneralhome.com.


Thank you.

We have been blessed. Each of you had been a part of that blessing by sharing in Timmy's story with us. There is certainly more to his story that we will share in the coming days as time permits, and I have an actual keyboard to sit down at, but Timmy has ended his struggle with CHD and is at rest.

What an amazing privilege and blessing it has been to have Timmy in our care these past years.

Tuesday, November 6, 2018

The mixed blessing of having answers

Just a quick update this morning.

Despite responding well during the day yesterday, Timmy's condition has worsened overnight with oxygen sats dropping very far overnight. The Doctors have no other reason (viral, bacteria, etc) for the change, other than the condition of his heart has worsened.

We went to Rochester for answers. We have received the answer that there is no medical 'fix' that the doctors have. The truth is, this is how God answers. Sometimes yes, sometimes maybe, sometimes no. We love our Timmy even more than we did 2 years ago when we faced a similar choice, and the answer is still the same.

So the focus now is on comfort. Comfort and prayer. My God is able to do whatever he wants. And I will give Him the glory whatever his choice is. Your prayers for all of us (Timmy especially) are appreciated.

Monday, November 5, 2018

Monday update

The last 24 or so hours have been pretty eventful. Over the course of Sunday, we decided that things weren't improving, and we set 7:00 as our time to make a go our no go decision. This allowed me to finish off the services for the day, but also have us a deadline to make a choice. With no improvement, we left for Rochester around 8:30 last night.

We arrived at Strong's a little after 11 and after some tests and a lot of questions, Timmy was admitted back to the PCCC and welcomed by some friends from 2 years ago. Several remember Timmy well, and remember the soaps and cinnamon rolls we shared with them.

They have taken more blood work and done X-rays and are fairly certain that his heart failure isn't the problem and neither is pneumonia. So far, slight dehydration and horrible oxygen levels are what they know. More tests are being run, but primary work is on hydration and working on a few blood levels that were slightly off. He is on high flow oxygen and plenty of wires and tubes, so he is also on vallium to help with his being agitated. Maybe that is all they will find and Timmy just needs his meds adjusted, or maybe they will find something more. We have not been given an expectation as far as time goes, but our current guess is 1-2 weeks. Not really a fun guessing game, but we'll see how it all plays out.

We appreciate so much all of the prayers we have been assured of and know are going up for Timmy. He has a great team here and many people that care for his needs and look out for mom and dad as well. Another support team is helping on the home front. We are truly blessed.

Sunday, November 4, 2018

Sunday Morning Prayer Request

As I mentioned last week - Timmy may be struggling with pneumonia, or it may be his heart failure is trending worse.

This morning, we noticed that his feet are very swollen.

The last time his feet were swollen like this was September of 2016, a week or two before he was lethargic and we ended up heading to Rochester for his 2 month stay.

Needless to say, we are quite concerned for him, and will be contacting some of his team today to find out what we need to do. The more I think about it, the more I think Rochester is in his very near future. Aside from his immediate well being, this may bring in lots of other treatment questions of what roads to go down concerning his care. We are not worried about all those questions, but know that a lot of wisdom will be needed in the coming days if a trip to Rochester is taken.

** Update: Cardiologist recommends increasing the diuretics at home, and seeing if we can manage the heart failure at home first. That's a praise, but he wants us to call him tomorrow to check in. **

We appreciate all the prayers we can get for our little guy.

Psalm 9:1-11
 I will praise thee, O Lord, with my whole heart; I will shew forth all thy marvellous works. I will be glad and rejoice in thee: I will sing praise to thy name, O thou most High. When mine enemies are turned back, they shall fall and perish at thy presence. For thou hast maintained my right and my cause; thou satest in the throne judging right. Thou hast rebuked the heathen, thou hast destroyed the wicked, thou hast put out their name for ever and ever. O thou enemy, destructions are come to a perpetual end: and thou hast destroyed cities; their memorial is perished with them. But the Lord shall endure for ever: he hath prepared his throne for judgment. And he shall judge the world in righteousness, he shall minister judgment to the people in uprightness. The Lord also will be a refuge for the oppressed, a refuge in times of trouble. And they that know thy name will put their trust in thee: for thou, Lord, hast not forsaken them that seek thee. Sing praises to the Lord, which dwelleth in Zion: declare among the people his doings.

Thursday, November 1, 2018

At least thankful for the little things

Timmy has been congested again, and, with the weekend coming, Thursday is a good day to make an appointment to see the doctor. Timmy's normal doctor wasn't available, so the appointment was made with another doctor in the practice at the Westfield office. A little longer to travel, but at least the doctor met Timmy 2 weeks ago, so he was already acclimated to the weird things about Timmy. O2 sats, heart beat, etc.

The doctor heard gunk in the lungs, and was concerned that his color wasn't as good as 2 weeks ago, so he wanted x-rays of the chest, and a few blood tests done to determine if Timmy's heart failure level had gone up, or if it was just a viral infection in the lungs. Since he needed a nebulizer treatment, and Jen needed to eat, they came home from the doctor, gave Timmy a breathing treatment, and ate before heading to the hospital for the tests. 

X-rays went fine, but the blood work had a few hiccups. First, Timmy twitched toward the end, which pulled out the needle. They thought they had enough blood for the tests, so they sent it up. Hospital policy requires for rush tests on little guys like Timmy, that they wait to make sure they have enough of a sample before sending the patient home, so Jen sat with Timmy until the nurse heard back from the technician that they had enough blood. The nurse sent them home. 10-15 minutes later, the technician calls me to let me know that they didn't have enough blood, and Timmy needed to return (once he got back home, had another breathing treatment and got some food) to have the heart failure test done.

With both of us low on rest, and Jen spending several hours on the road today between home, Westfield and Jamestown, another trip to town for her and Timmy didn't sound like very much fun. When I talked to a supervisor at the lab, though, they wouldn't agree to send a nurse out to get the blood sample they needed. ;) Meanwhile, we were burning through oxygen tanks left and right, the feeding schedule was thrown off, so Timmy wasn't getting all the nutrition he needs, and time, gas, energy and patience were all being burned at rates too high to continue at for long. But, Jen thought she could make the 3rd trip to have the blood work done again.

We were just getting used to the new reality (Jen on the road again - almost non stop from 10 in the morning until 6 or 7 tonight, in time to grab dinner before I needed to head back to town to pick up a child from work), when the doctor called. Due to the mess up at the lab, he thought he could do without knowing the level of heart failure and just call in an antibiotic for Timmy. The blood work can be completed tomorrow, if desired.

Since that call, we have called the oxygen supply company, and they will replace Timmy's empty tanks tomorrow (instead of the usual Wednesday). The pharmacy will have the medication available tonight so we can get Timmy started on it tonight and hopefully see some improvement tomorrow. Timmy doesn't have to head back into town tonight, so he is resting. And Jen is able to 'relax' by not driving back to town. (I could do the driving, but Jen feels better being with Timmy, so other kids would have to come with us, and a couple of the young ones have coughs, so she preferred driving Timmy to appointments over the alternatives) 


And we are hoping and praying he gets better rest tonight, and the antibiotics kick in to help him start feeling better. While he is a medically fragile child, in some respects, he is built like a tank. The doctor today was surprised that after a 2 month hospital stay 2 years ago, Timmy has not been readmitted to the hospital since, not for surgeries, not for treatment. Even in the little storm squalls, we are thankful for so many of those little, and not so little, things.

Monday, October 29, 2018

Timmy pictures!

Therapy with M&M's!


The cups were for poring the M&M's back and forth in, but he thought they went better on his feet. 

He loves looking at paper books or magazines. 

Dressed up for church.