Monday, October 31, 2016

My view

Left home around 5:30 with 8 eager children. Arrived to surprise mom at 8:30 in Timmy's 'room.'

Numbers look good today, discussion may take place about him later today.

Sunday, October 30, 2016

A restful night, hopefully a restful day

Just a quick update this morning:
Timmy's weight is down again at 3.9 kg, still higher than a month ago, but down over the last few days. The chest x-ray looked clearer this morning, which is a good sign. He rested well through the night, having periods of rest and periods of being awake and looking around, all without being agitated. The goal for today is to be comfortable and not get agitated. (Being agitated probably burns off too many calories)
The team is planning to discuss Timmy on Monday or Tuesday (probably Tuesday), after having another echo cardiogram done, so we are praying for some good news from that discussion.

Saturday, October 29, 2016

More relaxed this afternoon

We are glad he has been able to rest more since this morning. He took a nap, was awake to get his lungs cleared out a little (chest PT and suctioning) and appears to be going back to sleep. It is always a good thing when it gets 'boring' around Timmy. We are thankful for the slower paced times.

Slow day?

I'm not sure if I am fit to judge what a slow day and an exciting day are. Today, they noticed more cloudiness on the lungs in the chest x-ray, which may be more fluid, or it may be pneumonia. One of the cultures they took is growing, but they are not sure if it is normal stuff, or an infection. So, they want to put him on another antibiotic. They are stopping the vanco and starting him on Bactrim just in case it is pneumonia. They are also changing out his sedative to one that lasts longer. He had a little bit of a rough night, and even having trouble settling this afternoon. Jen says they have had to add other sedatives along with the new one as they are trying to calm him down.

Still much to be in prayer about, and still much to be thankful for. It is nice to be home for a few days, and nice to have plans to be up for a couple days with the kids next week. That should keep things interesting, and give Jen a little extra dose of loving on the other kids to help see her (and the kids) through.

Friday, October 28, 2016

Tubes are in

A little rough at first as one of the tubes folded over in Timmy's tummy and made him a bit uncomfortable. The tube had a wire in it to help with placement. They have repositioned the tube and both are in the right place, so they are prepping the breast milk to restart feeds. As long as he continues to tolerate the feeds well, he should rest well the rest of the day. So he should only be about five hours off his feeds as long as there are no more hiccups (or hiccoughs, if you prefer).

Possibly a long day for Timmy

Timmy continues to be somewhat restless this morning. Overnight, they sedated him four times, this morning, once more. Most of his numbers look good, but he is still fighting a lot of gunk in his airways. He is on two antibiotics, and will continue for the next few days at least.

The restlessness and discomfort are now assumed to be from gastrointestinal gas build up and bloating. The plan to help this involves stopping his feeds, pulling his NG tube, installing an nd tube (goes down past the stomach), putting in a new ng tube to suction off excess gas, and doing an X-ray before restarting feeds. They hope to accomplish this during day shift today (day shift goes until 7), which means they hope to get feeds restarted within 10 hours.

His weight has not been checked yet today as his bath overnight didn't go well, and after the bath he went to sleep and they wanted to let him sleep.

Thursday, October 27, 2016

Medicated to sleep

After two different sedatives were administered over the course of the morning, Timmy is settled back down. His fever has come back, but the cultures from yesterday (urine, blood, mucus) all show no growth. His weight is up to 4.225 kg today, even after being back on all diuretics. His weight had been stalled around 3.6 kg for several weeks, so that is encouraging.

The cardiologist team met today and discussed Timmy. The big decision was that we don't have enough time on the ventilator nor enough new data to decide anything. This was one of the better results we could have hoped for. No new ray of hope, but no bad news either. Next week on Monday or Thursday more decisions will probably be made.

They are not sure why he has been struggling and spiking fevers, so that is still a concern. And even now, his heart rate is starting to go back up, despite the morphine they gave him thirty minutes ago. It may be a long day.

Praising God for his goodness through it all.

Timmy's been agitated this morning

The doctors are starting on rounds, and we will update with what we find out soon, but Timmy is having an agitated morning and trouble settling down. Heart rate is high, respiration are up, so prayers are needed for him this morning.

Wednesday, October 26, 2016

Another move

I'm not sure we'll ever get used to this aspect of Timmy's hospital stay. Tonight, they are moving Timmy into the 'bay' of the PCCC. The bay is an open area, set up like individual rooms, but with no walls between them. They have a curtain to pull around the area for some privacy, but no door to close to keep out hallway noises, and no private area for Jen to use the breast pump in. For any privacy, she will need to use the nursing room down the hall from Timmy, instead of being able to pump where she can listen in on Timmy and keep up on the care they are giving him.
We were at first told that it would be just to make it easier to care for Timmy overnight, but we're them told that they didn't know when they would be moving him back into a room. For those keeping track, this is the sixth move since being admitted a month ago. It is pretty frustrating at times, and we try to look on the bright side, but it seems like this will put more strain on Jen, and make it harder for Timmy to get rest. Please pray with us that this will not be the case, or that we will get moved back shortly into a room.
Timmy is still having problems with junk in his lungs and breathing passages, but is looking better. Hopefully conference tomorrow will yield some good news from the doctors.

Today's goal - feed and love


The doctors were happy with how things looked today. He is back on all his medications, and they are tweaking the details to keep things steady. They reduced the rate on the ventilator to let Timmy take more of his own breaths, as well.

The big request for today (on top of growth and healing) is for the conference of the cardiologists tomorrow. They will again be discussing Timmy and we are hopeful for some good news and even a new ray of hope would be nice. No matter what comes, we are trusting and praising God through it all.

Tuesday, October 25, 2016

Settling in well

Timmy is having a good day today!
He is off all sedatives and having normal wake/sleep cycles. His numbers are looking good for most all the levels they monitor. His weight appears to be going up - we'll know better when they get the diuretics balanced back out totally.

Lots of medical gear:
But he's handling it like a champ.
The other kids are on the way back home this afternoon. They had a good visit with mommy.

An unexpected blessing

Today is a travel day. The kids get to go to the hospital to see mom, and mom gets to see the kids. This normally happens on Monday, but the ventilator made this weekend anything but normal. Extra help has made this week abnormal as well.

My younger brother e-mailed me Sunday to ask if they could help. His church had decided that our family needed help, so they told him to take his family and come help our family. His church is covering their travel and expenses, and will cover any services that they need to. He was e-mailing to see if coming would be a help. So we have a few extra hands on deck this week. I'm not sure what this week will hold, but God has been very gracious to work things out before we knew the need existed. The help will allow us to enjoy our visit with a little less stress, and allow me to spend more time with Jen this week. Needless to say, we are grateful for the people of the Harvest Baptist Church in North Vernon, Indiana, and for the added relief their help gives us this week.

I won't know how Timmy made out over night for several hours (news in the middle o the night is rarely good, so I am thankful there has been no news so far today), but wanted to post of our blessing. We will be traveling today, I'm beginning to lose track of mileage and time spent in travel, but even so, all my miles have been uneventful.

Last night seemed to have more time for prayer than for sleep. I'm not sure why, I wasn't overthinking things or dwelling on things, just not sleeping well. Then I get up and read from Psalm 4 this morning.

"There be many that say, Who will shew us any good? Lord, lift thou up the light of 
thy countenance upon us. Thou hast put gladness in my heart, more than in the time that 
their corn and their wine increased. I will both lay me down in peace, and sleep: for thou, 
Lord, only makest me dwell in safety." - Psalm 4:6-8
David's answer to those who wondered if God was good and sought his blessing was that God had already blessed him beyond the physical blessings others were seeking. And that allowed him to sleep. I am comforted and challenged by David's encouragement this morning. If I look at my circumstances, I find little peace. If I look to my God, I have all the peace I need.

Monday, October 24, 2016

Fever has come down

Timmy's fever has come down, and with a drop in the amount of sedatives he was on, he was alert for a while and looking around and moving his legs tonight. Jen has gotten some rest today, and got back earlier than normal to her room. Hopefully it will be a calm evening. Thankfully, it has been a little calmer already.

A persistent fever

Since they put Timmy on the ventilator, he has had problems off and on with a fever. All the cultures came back negative for infection and pneumonia, but the lungs have been having trouble clearing out the junk that is building in them, and one of his lungs was not working quite properly, and some of those troubles have continued.

At present, he is still spiking a fever that they are trying to reduce with ice and Tylenol. This morning things were not looking the best, but he had been up and down a little. With the fever persisting and continued problems getting the left lung to work properly, it is making for a rough afternoon. Please pray that things improve and the night is able to go better, and pray for strength for Jen. She was able to get a nap this afternoon, but the ups and downs take their toll on energy levels.

Pray with us as we trust God for his provision in the midst of it all.

Another move

Timmy has enjoyed the last 3 weeks in the PICU. At Golisano, the PICU and the PCCC are neighbors, and Timmy's room was in the PICU, but right at the end of the PICU nearest to the PCCC. He is now moved deep into the PCCC (Pediatric Cardiac Care Center) where, as yesterday's cardiologist said, he belongs.

As feed have been started back up, they are working to get medications monitored. Overnight, his heart rate dropped too low on two occasions, so they have taken him off one of the sedatives, and he seems to be doing better in that regard. The next step (aside from tweaking his inputs), is to resume the full complement of diuretics he was on. They paused some of them because the ventilator procedure stressed his kidneys and they wanted to give his kidneys a break. The doctors should be on rounds soon, and we are hoping for a boring day of reviewing numbers. The big hope for this week is to see an increase in his weight. We really wouldn't mind seeing nice 20-40 gram chunks being added daily to his weight.

The kids aren't going up today as I drove on Thursday, Friday, Saturday and Sunday this last week, and am taking the day off. The kids will get to go up tomorrow, so they are not going to go the week without seeing their mother.

Thanks again for praying, we appreciate you all.

Sunday, October 23, 2016

Holding steady

After a pretty rough day of ups and down, Timmy is settled, sedated,resting, and feeding again. They don't think he had an infection at this point, just some junk in his lungs from putting in the vent tubes. His heart rate is back down, and his oxygen levels have been improving. The doctors say he is doing well for having the vent put in yesterday. We are hoping for a more boring day today.

Saturday, October 22, 2016

Rollercoaster day

Well, we're still waiting for things to settle down with the ventilator in. After resting peacefully for a few hours, Timmy spiked a fever and is agitated again. They have upped his sedatives, but his heart rate is back up high with whatever infection he is fighting.

We are hoping the coaster slows down soon, but continue to rest in God's grace. My drive to Rochester provided a good opportunity for worship today. Even as I drove in ignorance of what was going on, it was good to rejoice in God's goodness.

Resting better

This may not look good, but he is doing remarkably better from this morning. Waiting to see how everything measures up and to get feeding restarted, hopefully soon.

Timmy is being intubated

Well, they told us yesterday "The next step for breathing is extreme, and we're not there yet." To which I responded "A ventilator, right", and they told me "Yes, but we're not near that, yet."
24 hours later and we are there. Pray for Timmy as this is a procedure to intubate him, for Jen as she waits in the waiting room, and for the rest of us as we hop in the van to support mommy as soon as we can.

Rough morning, please pray!

Jen was called just before 3:00 that Timmy wouldn't settle down, so she went over to the hospital and got him settled. This morning his heart rate has been high for quite a while, he has a fever and he is very agitated this morning. They are taking a culture to see if there is an infection, and have to wait until they get results to know what to do. Prayers are certainly appreciated.

Friday, October 21, 2016

Stumping the experts

One of Timmy's thoughtful looks:
More numbers from rounds today. Most numbers are improving as they continue to try to balance diuretics, electrolytes, hydration, and a host of other measures. Increase a particular diuretic, and it pulls a certain anion (electrolyte) and can impact several other factors. Each adjustment results in more adjustments. His weight seems to be holding steady, but not really rising despite added calories. His breathing is still tachypnic (rapid and shallow), so they are increasing the flow of oxygen to his nose to force more oxygen in with each breath. They are anxious to take more images (X-ray and echo) because they hope to see a change in heart size or function, or at least see a reason for why things are not improving faster.

All this to say that we see the consternation on the faces of some of the medical staff, and we hear it in their voices. We are again glad for the care Timmy is getting and the concern that his team shows in trying to solve Timmy's problems. I was able to share Psalm 9:1 with some of Timmy's team yesterday, and let them know our goal is to praise God with our whole heart, and our prayer is that Timmy will also.

Thursday, October 20, 2016

Happy daddy

Things remain pretty stable today. Timmy has been more regular in his sleep patterns since the new nasal cannula. He has been sleeping for three hours at a time during the day. Weight was up again, showing an upward trend for this whole week. If that continues, it takes the pressure off the doctors (the pressure to do something). This allows time to see what Timmy's body will do, and hopefully will open up more options.

Since I got to take the picture in person, I am a happy daddy. It is hard having my heart divided between children 3 hours apart, but I am glad I get to spend time with all of them during the week. I am glad too that mom gets to see all the kids every week as well, at least so far. We are blessed.

Wednesday, October 19, 2016

Praising the Lord

As mentioned earlier - so far, so good. Since changing the breathing setup for Timmy, he appears to be calmer and his respirations are more settled. So far he has not been as agitated as he has gotten in recent days. We are praying that this trend continues, and are praising God for his answer to so many prayers over the last day or so. I'm looking forward to seeing the difference in person tomorrow, so I hope Timmy continues on this trend.

So far, so good

Here he is with his new equipment installed:

It is a different cannula for the forced oxygen, and I think the additional moisture is somewhere there. It helps hold his feed tube in better, as well.

He has been smiling and cooing this afternoon, so it seems the new setup isn't bugging him so far. Mommy is feeling somewhat better that Timmy is adjusting well, and she was able to get laundry done this morning. She is still low on sleep, but is much improved. It is nice to have a break to be able to breathe from time to time.

More changes

This morning's rounds brought more changes. He is not gaining weight well, despite extra volume and calories in his feeds, so they feel they need to do something.

They are increasing one medication to help the heart relax more. They are changing him to 'forced oxygen' to maybe help with his rapid breathing (possibly burning too many calories). It sounds like this is the next step on the breathing options (normal air, a nasal canula with oxygen mixed in, a nasal canula with pure oxygen, forced air, . . ., respirator - I'm not sure how many steps in between, maybe this is the last one). With this, it is more drying, so they need to add a moisture tube to keep his airways from drying out. The forced air may also end up getting more air in the tummy, which will cause gas and problems with feeding. I guess there is another option for feeding at that point, but we are praying it won't have to come to that.

Jen has not been able to get as good of rest as she needs to function well, so prayers for her are still greatly appreciated. The plan is to get up there tomorrow and let her crash at the RMH for a nap or two if she needs. I can't take the place of mom, but I can hold down the fort and let mommy relax when she is away from the room.

Not an easy week, but a constant reminder of where our help comes from.

"I will lift up mine eyes unto the hills, from whence cometh my help.
My help cometh from the Lord, which made heaven and earth.
He will not suffer thy foot to be moved: he that keepeth thee will not slumber.
Behold, he that keepeth Israel shall neither slumber nor sleep.
The Lord is thy keeper: the Lord is thy shade upon thy right hand.
The sun shall not smite thee by day, nor the moon by night.
The Lord shall preserve thee from all evil: he shall preserve thy soul.
The Lord shall preserve thy going out and thy coming in from this time forth, and even for evermore."
- Psalm 121

It's been a long day

Just a quick update here. Timmy had a rough afternoon yesterday, and the PICU had a rough day and night, too. Lots of nursing changes and so Jen stayed with him overnight to help out the PICU staff and to make sure Timmy wouldn't just be a bundle of nerves with a racing heart rate in the morning.

So she's starting off the day tired and trying to figure out when to sneak back to the RMH to get the laundry done. Caring for a baby is a full time job, even with the PICU nurses and staff. We continue to be glad she is able to be there and ask for continued prayers for strength for her and Timmy.

Tuesday, October 18, 2016

It's been a busy day

But I've been enjoying it, looking around when I'm awake.

And moving my feet and legs a lot.

I've had at least 3 different nurses today, so the boy next door must have a lot of needs. It is good that mommy is here with me so the nurses can help him and his family out more. I'm just working on gaining weight and since I have physical therapy, I guess moving my legs helps.

Mommy and daddy keep telling me how many people are praying for me and how many people send their love. They seem really happy about that, so thanks!

Not worse, but not better

I know, it's a picture from yesterday, but I like it. :)

Last night, Jen heard one of the PICU doctors talking on the phone about Timmy. Apparently, the person on the other end wanted to 'do something,' but the PICU doctor wants to give more time to give Timmy a chance to start growing. We've had up days for weight, and down days. Even after the good days, he remains around 3.5-3.6 kg. The number that shows if he is in heart failure is still 6-7 times the normal range (so he is still in heart failure status). And other numbers like electrolytes and blood sugar remain bouncing around the normal range.

We are thankful for Dr. Jill who advocates 'boring' and giving time rather than jumping to surgical options that seem to be mentioned so that they are 'doing something.' Most everyone agrees that the surgery they are talking about would not help at this point. Glorifying God, Timmy's health, wisdom for the medical staff, and strength for us remain the big prayer requests.

*Update* They have pushed off conferencing about him Thursday! Praise!
This means they are not scratching the itch to 'do something,' at least not today. 
Also, he gained a little weight today. Still low, but at least gaining.

Monday, October 17, 2016

Troubled, but not distressed

My company this afternoon:

It may not look like much, but this was my afternoon's excitement today.
Yes, there is an extra piece of tape holding his feeding tube in his nose.
Yes, it is hard to get a good picture with him making faces.
Yes, there are still wires everywhere.
But when he looks over at me and smiles, it makes this daddy very happy.

For the update: They have increased him to 28 kcals per ounce (28 food calories per ounce of feed), while keeping him on 27 ml per hour continuous feed. (9/10 of an ounce per hour)
They are continuing to increase his caloric intake because he is still barely growing.
One Dr. suggested it was time to do the arterial banding surgery, 
but the others say they don't see how that will help.
The x-ray was unchanged again this week, and another echo will be tomorrow or Wed., 
but it still seems they are scratching their heads over Timmy. 

Tonight, Jen is putting in a few extra hours at the hospital to relieve some stress on Timmy's nurse due to another patient who has had doctors and the chaplain hanging around all day. We are fortunate that with all their wondering, Timmy has been happy and seems healthy. We are fortunate that we can allow Jen to stay in Rochester to care for Timmy, even the extra hours until reinforcements come in to make it easier on the team caring for him. We are fortunate to have completed over 2200 miles in the last 3 weeks without incident. (By we, I mean Daddy. Mommy has completed around 200 miles, kids have ridden just under 1000). And God has used others to bless us in more ways than we can count. Tonight, a woman came up to me at McDonalds and asked if I was Timmy's dad. She knew us about 15 years ago (I guess I may not be aging as gracefully as I thought), and wanted to let me know that she was praying for Timmy and for us. Before she left, she made sure the next stop at McDonalds was on her. Certainly the most pleasant way McDonalds food has ever caused me to want to cry. 

All to say, we may have it rough right now, but we sure have it good.

Along the lines of what Paul shared:

For we preach not ourselves, but Christ Jesus the Lord; and ourselves your servants for Jesus' sake. For God, who commanded the light to shine out of darkness, hath shined in our hearts, to give the light of the knowledge of the glory of God in the face of Jesus Christ. But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us. We are troubled on every side, yet not distressed; we are perplexed, but not in despair; Persecuted, but not forsaken; cast down, but not destroyed; Always bearing about in the body the dying of the Lord Jesus, that the life also of Jesus might be made manifest in our body. For we which live are alway delivered unto death for Jesus' sake, that the life also of Jesus might be made manifest in our mortal flesh.
- II Corinthians 4:5-11

Rough morning for Timmy & Jen

We are getting ready to head out to the hospital in a bit, but I guess it has been a rough start in Rochester. The nursing staff got shifted around overnight, and the nurse assigned to Timmy didn't know much about his care. They wrapped him in a hospital blanket and he now has a rash. They didn't use any of the breast milk in the freezer to feed him with all night, they used regular hospital wipes to clean him up, and gave him Tylenol to help him sleep, with the results of having a baby with a rash that is very agitated (heart rate very high and very fussy).

This is the second time in a week that Jen has returned to his bedside to find him all worked up, and many things done to work against him being settled. Pray that she can get him settled down soon. It doesn't do well for Timmy or Jen for him to be worked up like this.

Sunday, October 16, 2016

Play Time

No rounds today as it is Sunday. Small changes today for Timmy are that they upped his feed from 25 ml/hr to 27 ml/hr. This is an extra ounce and a half or food per day, right around 40 more calories per day. He is tolerating the increase well, hopefully is will result in packing on some more grams to his weight.

Jen did some of his physical therapy exercises with him and here he is playing in his crib. Maybe the toy in his hand will prevent him from playing with his nasal canula and feeding tube. :)

Saturday, October 15, 2016

Calmed Down and Back on Track

The 'trauma' from this morning all behind him now, he's been settled and enjoying his naps better today. On his agenda is getting a bath and taking more naps.

A little excitement this morning

When Jen got in this morning, she heard there was a problem with the feed bag bursting, so they were replacing it. A little later in the morning, she noticed that the bubbles in the feed line were not moving, and let the nurses know. It turns out the feed tube was clogged, and it had been about 2 hours since Timmy had any food going into him. The doctors were doing rounds at that point, heard that Timmy hadn't had any food in at least 2 hours and it got pretty exciting pretty quickly.

They were trying to  put in a new feeding tube, and get the problems solved. No word yet as to whether they will turn up the feed a little to catch him up, or what the problem was. Just a reminder to keep praying for Timmy. We never know when he will need them the most!

*Update* The first attempt at a new NG tube didn't go well, so Jen nurse him for a while to settle him down, then they had to wait for the food to digest before trying again. They were successful on the second attempt. With 4 hours or so of not having food pumped into him, it is a 'loss' of about 80 calories. Out of his 520 calorie input for the day, that makes a dent in the nutrition side of things. He is back on track now, but the lost ground is just lost.

Friday, October 14, 2016

Morning update

Here I am after my bath this morning. The doctors have done their rounds already. The updated plan is to discuss Timmy next Thursday in conference again to see where to go from here. The cardiologist on this morning joked that we should decorate his room for Halloween and Thanksgiving.

Weight has stayed steady the last few days, but we are on an upward trend, and he is cooing and smiling more all the time. We are grateful. We hope to not be here much longer, but we are along for the ride, however the path leads.

Thursday, October 13, 2016

Our little lion

I get to see my little guy in person today. Waiting to hear what the doctoring staff have to say today. No news is good news.

Wednesday, October 12, 2016

Just saying 'hello'

Well rested after his nap this afternoon. From the sticker placement, it looks like he may have been playing with his feeding tube again. Loving those fingers!

Excited over 20 grams!

Yesterday, Timmy weighed 3.62 kg, today, he weighed 3.64 kg. In grams, that is 3620 grams to 3640 grams, or a 20 gram difference. If you aren't super familiar with metric units, that is about 7/10 of an ounce difference. That is similar to the increase from the day before. Not a huge amount, and our weight changes day by day and at different times of the day. To make the weight as accurate as they can, they weigh him in the morning, right before they give him his morning dose of Lasix. The feed and fluids going into him are going in on a continuous basis, so they can be pretty sure, even day to day, that when a small increase is shown, that he is gaining.

The plan continues the same, although with a little more detail in terms of time than we had before. They want to keep him on this routine (hopefully gaining weight and keeping medications and feeding the same) for a few more weeks. At that point, the options are still pretty open: surgery, adjustment, or even changing his medications over to oral doses to be able to come home. All of which looks and sounds suspiciously close to at least a month more of hospitalization.

They did an echo yesterday (even though they were going to wait a while before doing another one), and said that the regurgitation in the heart looks better, even though the size of the heart hasn't changed much. Less regurgitation means better flow of oxygen through his body and his heart has to work less to accomplish better results. All good news today in terms of his numbers, and how he is looking (inside and out).

They are also starting to send therapist (OT & PT) by to start working with Timmy on movement and strength things. Hopefully, that doesn't become another thing to disturb his sleep patterns, but it is good to start gaining some strength as well.

The Dr. filling Jen in commented that Jen has just been lovely about this all despite the fact that this is going o take time and require a while longer in the hospital. It is awesome when God's grace is evident. Not all moments are good moments, and they understand that, but by God's grace, we aim to honor Him in the things that come. And His grace is showing through.

Tuesday, October 11, 2016

It Was A Good Day. It Was A Rough Day.

Timmy had a bit of a rough day with some gas discomfort and wanting to be held. It made it harder on Jen because he wanted to be held by her standing up. They also came to do the echo cardiogram today (yeah, the one they said they wanted to wait until the end of the week to do). And they came while he was tired and made it harder on Jen to comfort him. Sometimes, they don't think about the need of a patient to sleep. A lot of things get thrown off by sleep depriving an infant.

It was also a good day. My parents drove out to stop in and visit. I figured it wouldn't be long until they stopped by, and Jen was glad to see them.

My guess is that someone is more anxious about making progress and wants to test all the time. Others want to take a slower pace and wait to check in so that there is a better chance of actually seeing progress. Oh well, some things take longer than expected in the hospital, and apparently some things move much quicker that we are told. We'll keep hanging in there and hope for good results from the echo today.

Tiny, Baby Steps

Well, weight is up a bit from yesterday, all of his numbers are looking good. The only bad number a few days ago was the sodium count, but they added a supplement to his feeds that have helped that one. Aside from wanting to pull out his oxygen and feed tubes from time to time, he is doing well.

They are holding off on the echo cardiogram at this point to hope to find some good progress. They may do one at the end of the week. So far, the heart's size seems pretty consistent, and they want to see it shrink quite a bit.

They repeated that they want to see Timmy stay 'boring' for a while before they make any decisions, so we are happy that things remain fairly boring. Jen is far from bored, though. Today the nursing staff has been busy with other patients, so she has stayed busier keeping Timmy happy and comfortable. Between pumping to provide milk for the feedings, and caring for Timmy (cleaning, changing, holding & soothing, and even moisturizing to keep his skin looking so good), she stays busy. The boring is more on the end of the reading of the numbers and the lack of surprises in Timmy's condition. I guess a nice busy boring is the normal we like at this point.

Monday, October 10, 2016

Not Out of Our Minds?

I saw my Timmy today, but I didn't take a picture. I posted the one mommy sent this morning already. Last week while we were at the hospital 2 ladies (doctors, I believe) came by and asked how we were doing, and what we understood about Timmy's situation and care. We gave them the "Cliff's Notes" version, and they let us know they were there to bridge any gap in communications between us and the other hospital staff. Weird, awkward, but OK, they're trying really hard here.

This week, they stopped by and asked Jen several times if she was OK, how was she doing, etc. We're getting the idea that they may be on the psychiatric side of doctoring. They seemed surprised and unsure how to proceed since Jen actually is doing quite well. I'm not sure if that means that we haven't lost our minds, or are just too far gone for help.

I'll go with the 'not lost our minds' option. As we talked today, we agreed that if we tried to handle this situation on our own, we couldn't handle it. It is beyond us, overwhelming, however you want to put it. Admitting there is a problem is the first step to fixing it. I can't handle it. Jen can't handle it. But God promises grace for each day, and God delivers. We're not perfect. We don't have it all together all the time, but we're living above the level of mere survival. That is only by the grace of God.

As far as Timmy is concerned, he was looking good today, his numbers were all good. He isn't gaining much weight, but there seems to be an upward trend. The x-ray of the chest didn't show any change in the heart, and we didn't hear anything about an echo today. There is still a lot of uncertainty. There is still no talk of a goal date for even leaving the Pediatric ICU. And we are learning contentment in the midst of it all. Make no mistake, God is good.

Time for a trip!

Since this is waiting for me:
I'm getting on the road. Looking forward to a good day!

Sunday, October 9, 2016

Quiet Weekend

Last night before bed:

This morning:

Timmy has had an excellent nurse the last few days. They have all been great, but we like Dan's "Let sleeping babies lie" philosophy. To get a child well, you don't disrupt their sleep unless it can't be helped. I guess you could call it a holistic approach to medicine, or just common sense. As busy as these nurses are, I can understand with all they need to do that they have to do certain things when they have the opportunity, which is what makes Dan such a special nurse. Tomorrow we travel up, Timmy gets another echo done (we think), and they decide on increasing nutrition or leaving it stable.

His oxygen was up overnight, so they have reduced the percentage of oxygen in his nasal canula. We are hoping this means the heart is down in size, resulting in less regurgitation in the heart. We will find that out tomorrow if they do another echo. He is bundled up this morning because his temperature had gone down, so they are back to keeping him toasty warm. He does seem to sleep better bundled, so it should be a nice restful day in the PICU for Timmy.

We continue to trust God through this and are learning and growing. While we don't like the circumstances, the opportunity for growth is constant and pretty much unavoidable. It is weird to be grateful for the opportunity to grow, but I guess that is part of the peace of God that passes understanding that comes when we give it all to God. I hadn't thought about Timmy's name and its meaning for a while, but a friend reminded me that his name's meaning was certainly appropriate through this. Timothy means "Honoring to God." This is our prayer and our goal. Thanks for praying.

Saturday, October 8, 2016

Slow morning, good morning

We got mommy moved from the Ronald McDonald House upstairs to the one a mile down the road yesterday. It is very nice to have a place to stay that is so close to the hospital, but the move reminded us of how spoiled we have been. Mommy is adjusting well, she found out how to get a ride from security to the house after hours, and how to get back in the morning before the shuttle service starts. The shuttle runs at 9:15, 12:00, 1:00, and 7:00. Mommy likes to be there before 8, and often stays until about 8 at night. The new house has more rooms, has a full kitchen (triple kitchen, actually) for our use, a larger laundry area, and is quieter.

Timmy had a good night, and is holding steady on weight for now. The next evaluation is on Monday when they will do an echo again, and make decisions about adding more calories to Timmy's intake if he is not gaining as they would like. Since they have the water pill meds balanced off for now, they expect to see a rise in weight since they aren't 'squeezing' more water out of him. At least one of the doctors doesn't want to increase feeds, because it can sometimes lead to problems with diarrhea or spitting up, and then they have to hold feeds and even lose ground that way. I guess every aspect of his care is a balancing act.

Mommy's excitement (aside from a ride in a 'police' car (security vehicle, same thing)) was that the alarms went off in the hospital, it was announced that there was a "fire in the medical center" and the automatic fire doors closed. Fire trucks came in, but things went on as usual in the PICU. I guess the fire was fare from them.

I haven't mentioned recently that there are two ways to follow Timmy's progress. The blog at: and the Facebook page at
When I post a blog post, it automatically posts to the Facebook page, so they have the same information. Occasionally, an extra post may get made on Facebook, but not very often. I just mention it to let you know you can pick the best option for you if you want to keep up with Timmy's journey.

Friday, October 7, 2016

Look who I found this morning!

I found my smiling Timmy! Jen has been telling me that he has been smiling more, but I had been missing it. His temperature was a little high overnight, so they have him unbundled to cool him down. Blood work came back clean so it appears that he isn't fighting an infection, just overheated a little.

With being unbundled, he was moving around a lot. Legs pumping and moving around, even a little 'talking' this morning. And instead of just looking around, he was better able to focus on me for several minutes straight. It is nice to see our old Timmy making an appearance. It has been a while.

Still waiting to hear what rounds bring as far as information, but this was a nice start to the day.

We're moved out of our room upstairs, and I will get us moved into the other house around 11 this morning. We are feeling very blessed today. More than that, we know we are blessed.

Thursday, October 6, 2016

It was a nice day for a drive.

Even with all the wires and tubes, Daddy likes to hold and sing to his Timmy. The drive isn't getting any shorter, but it went by nicely today. Glad to be up for a couple of days.

No big changes. Weight remains more or less stable, despite increasing diuretics. They added a new diuretic today and think they have the right cocktail now. X-ray is scheduled for Monday to check in on progress with the heart failure status he is in.

On our end, we will be moving Jen's base of operation for the RMH upstairs to the RMH down the street a mile. A little less convenient, and new transportation to learn (shuttles and security) to get back and forth. But at least we will be settled while I am up here with the car, and we are really grateful to have a place outside of Timmy's room to get sleep.

Mom is getting used to living at the hospital for now, and knows we are not looking at days, and probably beyond weeks at this point. I will be heading home tomorrow to love on the children at home. I'm getting used to the new arrangement a little, I guess a part of me doesn't want to. Lots of help at home makes it possible. The kids at home have stepped up tremendously, and we are working at finding our balance in it.

Thank you for your continued prayers for all of us.

Wednesday, October 5, 2016

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!

Tuesday, October 4, 2016

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.

Monday, October 3, 2016

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, October 2, 2016

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. :)

Saturday, October 1, 2016

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.