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.

Timmy!

Therapy time!

Playing in the van on Monday.

Getting sleepy.

Sound asleep.

Playing with stickers.

Rochester Visit for Swallow Study Today

Well, today we found out that the trip to Rochester is just as long as it has ever been. On the way home, we were reminded how interesting the trip can get quickly when we came up on an accident in the Thruway on the other side of the road that happened within the last 5 minutes. Once again, we are grateful for safety, and glad that at least no one appeared badly injured with a car rolled over, one spun around, and another banged up and did some serious off roading.

Timmy's appointment today went well - it was for a Barium Swallow Study - where they get Timmy to swallow a thickened food (honey thick, they call it) and take imaging of the food going down to make sure it goes the right place. While we are still waiting for the final report and the slow motion evaluation, we were given the green light to start working on feeding Timmy orally. Still not a guarantee that it will work for him (he may have too much difficulty breathing while eating, he may choke too much while eating, and he may throw up from eating orally), but it is a step of progress, and we are, again, very thankful.

It made for a long day, but we stopped at an 18th century village on the way home that had a "Free Kid's admission" day today. 7 kids for free sounded like a good time for us, so we got out of the van for a little over an hour to take the edge off of the 6 hours spent in van today. While there, we ran into missionaries that we and our church support, so it was a good time to stop.

Another notable occurrence of the day can be noted from the Timmy pictures in the post.

As always, thank you for your prayers for and interest in our precious boy!

We were playing with his little rolling horse - he's pretty good at pushing (or throwing) it.

A couple pictures.

Playing on his cart.

Going for a ride outside.