Weight gain, but a slow process

Today's rounds came with a nice surprise that Timmy had gained weight. The doctors were pleasantly surprised by that. The x-ray showed no discernible difference in the size of the heart, and he is still considered in heart failure. Because of this, they will be upping one of his diuretics a bit more to see if that will help.

There is no plan to discuss Timmy at conference tomorrow (not enough change) so they will continue on, possibly taking a new echo on Friday for updated pictures. The PICU doctor said "unfortunately, this will be a painfully slow process."

Thank you for your continued prayers for all of us!

Rounds Report

Timmy is all cleaned up and ready to face his day. He was down a little bit on weight today, but that is most likely a result of the adjustments to medications as they have continued to tweak things to find the balance they are going for in his body.

The goal for toady is "Fat and Happy." We are glad that he is smiling again, and even glad for when he is agitated. Lethargic is not a good emotion, and it tends to push all emotions to the side. Having a boy that goes through a normal range of emotions, and is falling back into a more normal sleep pattern is certainly an encouraging blessing.

Speaking of blessings, we have way too many things to be thankful for. Some of you have expressed concern over how mommy and daddy are holding up, so while we are far from basking in the glory of stress-free relaxation, we have been greatly blessed. Some of the things we are thankful for:

• God's promises. Jen caught this rainbow reminder the other day
• The support of friends and family
• The prayers of God's people
• The knowledge of medical professionals
• The compassion of medical professionals
• The generosity of people to the Ronald McDonald Charities 
• The generosity of volunteers working for the RMD Charities 
• The care and support of our church
• The ability to let Jen stay with Timmy in the hospital
• The ability to care for kids at home 
• The help of others caring for the kids at home
• Safety in traveling
• Friendship of others in the PICU & PCCC in Rochester
• Being able to find a treadmill in the hospital to use last week
• Stairs - the ability to get some physical activity day to day in the hospital
• Being able to get Jen out of the hospital for an hour yesterday
• Musical staff that come sing to Timmy
• Social workers to help with figuring out parking and badges

And I know I am missing things on the list, we are blessed.

Tour of Timmy's Room & Update

Here's how I found Timmy today:

Here's a picture of his room from the window side: 

And here is what the nurse's view of the room from the hall looks like: (at least when Jen is sitting down, often she is by Timmy's side holding him or comforting him to sleep when needed)

Today's PICU doctor was happy with how Timmy looked today. She summed up our feelings when she said "Here, we like boring" They are now feeding him continuously (27 cc per hour) and will up it if they need to. He is smiling more and moving around more; it seems we are gaining ground.

It's been a long day with a drive up and back, but a very good day. We are blessed.

A Day of Prayer for Timmy

Here is the latest picture to come home. His hands stay bundled now so he doesn't pull out his NG feeding tube again. He has been smiling more, which does his mommy's heart good.

My sister had been working on our family having a day of prayer for Timmy today, setting aside a day a month ahead of surgery to pray for him. As she told me "God knows what is needed and when" as the day of prayer falls a week into Timmy's hospitalization. She set up a schedule and there is a family member or friend praying for Timmy and us every half hour of the day today. You can see the schedule here. I know we have been encouraged by the number of people praying for us, and by my sister's planning and concern. I'd like to invite you to pray with us today. Then, if you want, to add your name in the blank third column by any time of day you're praying for Timmy and us as well. There is limited space, but if you click on a cell in column "D" or "H", you can add your name to any other names in there.

Thank you so much for all your prayers. Not sure if we will have any more updates today with driving up and back and all. Today should be another stable day, the plan is to not do another echo for a few more days, to increase his feeding volume from 75 cc to 80 cc every 3 hours, and to love on little Timmy.

Thanks again for praying. We appreciate you all.

Sunday's Rounds

A good update today. The Doctor says Timmy's liver function is definitely improving, they are tracking his weight and may increase his calorie intake if he is not gaining. They also may skip doing the echo cardiogram on Timmy tomorrow and just wait a little longer. This is music to us as they are comfortable with where he is and don't feel the need to check as often on progress. It sounds to us like the week should be less up and down, and more of a steady plodding. We will be thankful for the blessing.

Since I am posting this from 155 miles away and going through Timmy withdrawal, I will post a picture from a while ago - when Timmy was a healthier size and didn't have wires and tubes everywhere. Also, I don't want the only image you have of my son to be a sickly image in a hospital bed. I hope it makes you smile like it makes me smile.

Just one more sleep until I get to see Timmy and my wife in person again. One sleep and 155 miles.

Can you spot the difference?

This picture has a couple of differences from the normal (after 'complaining' that things were looking the same) Can you spot the difference? The 'reveal' will come later today. Things still are staying pretty stable and the routine is restful and somewhat comforting to us. Still trusting God for his perfect plan in all of this.



And the 'big' difference? The NG tube is in the other nostril. Timmy pulled it out overnight so they had to put it back in. :)

Today's report - pretty stable

As far as reports go, a report with slight improvement and no surprises is welcome news. We know it will take time before they update their plan, so no news is good news at this point.

Since it is a slow day in the news department, I'll just share a favorite picture from this week. Timmy's oxygen levels tend to drop when he sleeps (below their normal, low level), so in one of the floors he was on, they gave him a blow by tube. The tube just released moisturized oxygen near his mouth since the nasal cannula didn't help much when he was asleep and breathing through his mouth. It was tough to keep the tube in the right position, so apparently Timmy pitched in to help himself.