Sunday, June 3, 2018

It's not the heat, it's the humidity

Last night, as I was posting pictures from a week ago, Jen was figuring out that Timmy was being super fussy because his oxygen sats. were in the 50s. Timmy's cardiologist has told us as long as it is over 70, everything is fine, so 50s was not fine. He had been struggling to breathe a little and just was plain cranky - makes perfect sense if his oxygen sats. were so low. 

So, we scratch our heads, and came up with the answer quicker this time - since this has happened before. The cooler weather came in, but since it had been so hot, the humidity was very high with the cooler temps. The AC doesn't run so much when it is cooler out, and the air was more humid than normal. One of the VNA nurses brought the humidity problem up last year, and it makes sense that is what is happening again. 

We upped his oxygen and he is doing better, but it appears we need to be able to dry the air when it is cooler out, so I guess it is time for a dehumidifier for the downstairs to use when it isn't hot enough for the AC to be running.  In the meantime, we're hoping it warms up enough today to have the AC running more to dry out the air, windows open with 90+ percent humidity doesn't do any good for Timmy.

Saturday, June 2, 2018

Timmy pictures, since I was badgered today. ;)

I love that face!

These were taken the day we were celebrating J's birthday. He was opening presents, and I got pictures of that, too, but this little guy is irresistible. 

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.