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 his Congenital Heart Defect and is at rest.

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

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 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 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.

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.

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. 

A few pictures.

Trying to figure out what to do with Wedgits.

Apparently they are fun to look through.

He has had a bit of congestion, so he has had to have breathing treatments.

He doesn't mind them very much, as long as we use this tube instead of the mask.