Wednesday, April 11, 2018

Cardiologist Visit Today

It has been 5 months since our last visit with the cardiologist. This is the longest we have gone without seeing him.  We're getting longer on a lot of visits. No more VNA visits, next month will be 5 months since we saw nutrition. And even with going longer between visits, this one was planned to just be a consult. No tests were planned, just weight and measured. We thought tests were planned - Timmy's insurance called to let us know an Echo was approved, so we thought one would be done, confusion ensued, but the Dr. and the image specialist who does the echo's was more than happy to do one on Timmy. The Dr. said she's had a thing for Timmy since the first time she did his echo.

Everything is still the same. He is doing as well as a kid who had gotten surgery. Some of the cardiologist's comments:
"Hey, don't listen to us Doctors, we don't know what we're talking about."
"The man upstairs knows a whole lot more than we do"
"He's doing great!"
"Look how good he looks."

Anyway, the cardiologist approved the removal of another medication with monitoring. He was happy that we were down on another medication, and he was happy to not raise the amounts of any of his medications. This puts Timmy down to 4 medications. 2 taken twice a day, and 2 taken once a day. A long way from where we started and we are grateful.

OK, here are your Timmy pics.



Saturday, March 31, 2018

Someone was sleepy . . .

I know, there haven't been many updates. I have my excuses (like it being tax season and barely having time to do the necessary things most of the time), and, thankfully, things are pretty 'normal' around here. Normal for us may not be very normal, but things have been quiet with few surprises, and very few appointments.


Since his last update, we have decide to pull the plug on the VNA visits. Our normal nurse got moved elsewhere, and we had a string of other nurses who didn't like reading up on patients, but preferred to hear a patient's story from the parents. Incidentally, having to tell someone things they can access in their tablet gets old really quickly. Also, the big service they were providing at this point was to weigh Timmy every 3 weeks. If things change, we can ask his Dr. to start it up again, but it was getting to be more of an interruption than a blessing.

He continues with therapy 3 times a week (speech, occupational, and physical), although he has had the last week off as sickness has swept through the ranks in our house. So bad that our college kid has been pretty much down and out for 4 days now, and it has hit everyone. Timmy seems to be on the mend as of this morning, and slept well last night as well. 


In 3 weeks, we have our first Cardiology visit since the beginning of November, and in May, we go to nutrition for the first time since December. It is weird to have so long between appointments, but a blessing that things are much more stable now.

As I think of Easter tomorrow, I understand quite well the joy the disciples had in the empty tomb. Our boy was sent home to die 16 months ago, and is still with us. I may not have an empty tomb, but the empty coffin is a comparable joy.
Built with love and with much sorrow, but the continuing source of great joy. The coffin is empty, just as the grave is. For Christ, He is risen! For Timmy, he is still with us! I enjoy celebrating life!




Friday, February 9, 2018

Fun With Balloons!

Timmy is still struggling a little with congestion and coughing, but he seems to not let him bother him much, except when he is sleeping. (Or supposed to be sleeping.)

At any rate, he seemed to enjoy the balloons tonight. I picked up 2 boxes of balloon animal kits at Sears a few weeks ago with some "Free Cash" points they gave me to buy anything with. The balloon kits were on clearance and with free money, it was a great buy. All the kids enjoyed the balloons.







Thursday, January 18, 2018

Timmy Feeding Update

Sometimes, these Timmy updates are written to keep track ourselves of where we are at. While you all will enjoy the Timmy pic, and some of you may enjoy seeing what preparing his food entails, this post is mostly a record of where we are at with Timmy's food preparation.

Timmy's had a cold, so his nose and face are in rough shape, but that smile still comes through.


Today, I started with 8 scrambled eggs (this is 4 days worth of his main food)





Added a can of spinach (yes, fresh is better, but canned is easier to store and the garden is dead for a few months here)


Added around 20 ounces of cooked carrots (and the 3/4 cup of cooking liquid)


6 Tbsp of molasses


I also added 3 scoops of evaporated goat milk powder, 1 tsp of salt, and some powdered ginger.
Blended it well, then added 2 cans of Thai coconut milk (the stuff for cooking with)


It gets run through a strainer to remove any chunks, the squeasy bottle gets filled, and the rest gets put into ice cube trays to freeze for the coming days. This batch yielded about a 4 day supply of food.


When the food was finished, I mixed up his fruit smoothie:
3 bananas, 2 cans of pears canned in pear juice (drained), a handful o f frozen peaches, and a can of coconut milk.  This also yielded about a 4 day supply of fruit. From beginning to end, the food production took just over an hour (time savings by making both types of food at the same time), and will have to be repeated twice in an average week. We have trimmed a lot of time off of how long it takes to prepare his foods, yet still don't seem to have any more time. :) 

His fruit feeds stay pretty constant in terms of the recipe, but the main food gets mixed up with different proteins and other vegetables from time to time. He gets about 450 mls of food a day, and 270 mls of fruit smoothie a day. He also gets 60+ mls of bone broth and some water or tea some days, and every other day, a little bit of aloe juice. Aside from throwing up due to mucus from his cold, he seems to be tolerating his food really well on this, and we are working to up his foods a little at a time.

Sorry for the slightly boring post, but it helps us track where we are and what we are doing for Timmy.


Friday, December 22, 2017

Update & the 'Ugh' of holidays

He didn't let me get a good picture, but he had fun 'opening' a couple of presents from his therapists.

His therapist's seemed to enjoy the soap they got from Timmy, as well. 


We had a nutritional visit in Rochester this week, as well as blood work done. We got more encouragement from his nutrition team, met the new dietitian working with the nutritionist and got some questions answered. He is gaining slowly, but gaining is gaining, so we were happy to hear that report from them, as well.

The blood work came back with almost everything in the normal range, so the diet we are feeding him and the stopping of several supplements are both working well for his body being balanced well, even with the diuretics that help get rid of certain nutrients.


As far as the 'Ugh' of holidays, please don't take this as complaining. There are certainly times we wish life could go back to normal. No tubes, no wires, no endless stream of appointments, medications, feeding schedules, therapists, etc. But if that is the 'cost' of having Timmy with us, I don't want normal. But it doesn't mean that we necessarily enjoy all that goes into the cost.

So what about holidays? While they are special times, and we enjoy the pause to reflect on God's blessings in special ways, a pause means something different for us now than it did a couple of years ago. I just want to share to help you understand us better or other friends that may have medically difficult children or even a spouse or parent in their lives. Holidays are different. We have medications to order every 2 weeks (due to limited shelf life), others every 30 days, g-tubes get ordered every 3 months, and enteral supplies (other feeding supplies and g-tube care) every month. One pharmacy is only open Monday through Friday, other schedules are harder to figure out. Since insurance covers supplies every so often (at different intervals for different things), it is best to order some as soon as they are available to order. For example - I order Timmy's g-tube on the 22nd every 3rd month. It's in my Google calendar. Today, that works out to the Friday before Christmas. Apparently, that is a bad day - offices are closed. The schedule gets moved up 4 days from the old schedule. This time, there is no 'need' factor, just a reworking the reminder in the calendar and another phone call to make another day. Not much, but it adds up.

As far as the rest of holiday celebrations, we aren't as good at juggling as we would like to be. Holidays can be overwhelming in expectation, even if not much special happens.

We are looking forward to special Christmas Eve services at church on Sunday. Due to the timing of feeding schedules, not all of us will be there for all of it. Timmy may make it to the evening service, but not be able to stick around for the fellowship time afterwards. While many will put up with his retching sounds during a feed, it is a lot of work to take a portable feed. (Syringes of food, water for flushes, medications, burp cloths and supplies for venting/burping his tummy, and trying to position him to keep his food own). 

I share all this, not as a complaint (I love having my boy with us), but hopefully to help you understand us better. We've changed. It isn't you, it's us. We miss the old us more than you do.

We will have a quiet day at home on Monday. It looks like several kids will be able to go play in the snow, we'll open some gifts, we'll enjoy some good food (and egg nog, probably), and we'll spend some time reflecting on the Savior who gave up more than we ever could, to bless us far beyond what we deserve.

Merry Christmas from Timmy's Family!

Thursday, December 14, 2017

Timmy pictures to brighten your evening.

Good timing makes a good picture. This one was snapped in the split second between grabbing the crayon, and flinging the crayon across the room.


Older brother helping Timmy color.


Timmy enjoying his "Tubie Friend" - a custom made stuffed animal for Timmy with his usual equipment. It was ordered before he has been able to be off of oxygen regularly now. If you're into sewing and looking for a service opportunity, Tubie friends uses volunteer surgeons to make the friends and provides the materials to do it.We paid the volunteer donation to cover the cost of ours and shipping charges, but they will give them to children who request them. I think they may get a discount on "Build-A-Bear" stuffed animals (or donations). This one came with a card that had a favorite verse from the Psalms on it. "I am fearfully and wonderfully made." 


As far as being off oxygen, the VNA nurse noticed that his heart sounded less "Timmy-like" on her last visit yesterday. His normal beat is more like a galloping horse than a regular heart beat, but not recently. What does this mean? We don't know, but there are 2 possibilities that we can think of. Possibility #1 - in switching one of his medications, it is helping his blood pressure in a way that evens out the pressures between the chambers of his heart and there is less 'backwash' between the sides. Possibility #2 - is that his heart is just working better due to how his heart is growing or due to some level of healing of his heart. In either case, we are grateful to God that even as good as he has been looking (add the doctor that delivered Timmy to the list who have said it), improvements in any area are still a welcome blessing. Timmy has been throwing up quite a bit the last day or so, so he may be fighting off a stomach illness, but he has had an increase of energy lately (even while sick) that has come with his heart sounding better. 

I started to just post a picture update, not thinking there was much to update, but I guess there was. Been a busy few days around here, and it is good to stop and think about the good news.