Saturday, December 31, 2016

Happy New Years!

"How will you be bringing in the new year?"

My hope:

Reality is probably going to be a little different. Since it is Saturday night, I will probably be sleeping somewhat soundly around midnight. For Jen and Larissa (who helps out on Friday & Saturday nights), midnight is about the time Timmy starts settling down for the night. He's sleeping well now, but he'll wake up by 10:00 to fuss for a few hours (if his current pattern holds).

So, while we'll all be hoping to sleep in the new year, there will probably be some late night 'festivities' going around to help us flip the page of our calendar.

Tomorrow's Sunday School lesson is on praise - how natural it is for a believer to praise God. And the morning service is from Exodus 15 - the songs of praise after God defeated the Egyptians in the Red Sea. I think the reminder is a good one.

"I will praise thee, O Lord, will my whole heart; I will shew forth all thy marvelous works!"
- Psalm 9:1

With all the lost sleep, medication schedules, Drs. visits, hospital runs and everything else in between, we have been blessed and God has shown himself greatly to be praised!

Friday, December 30, 2016

A Pretty 'Easy' Week

First, a little comparison. Timmy as we were getting ready to leave the hospital, weighing about 9 1/2 pounds.

And Timmy this week, weighing in at 12 1/2 pounds.

We have truly been blessed.

A pretty easy week. It seems like it has been a pretty easy week. Until I think back through it. Over the weekend (Yes, Christmas weekend) we experienced some major leakage from the stoma (hole into Timmy's stomach for the g-tube). So much formula/breast milk was leaking out with stomach acid in it that it was causing skin problems and sores on the surface of Timmy's stomach. We have people we can call, but were unsure of who, and didn't want to be a bother unless we needed to. We eventually decided on adjusting Timmy's feed rate so his stomach wasn't so full, and to reduce the amount of gas-x we were giving him. Gas-x seemed to help when we first started giving it, but it now seems like it was part of the problem. The feed rate we changed so that he is getting continuous feeds with no time off the pump, but at a lower rate. It works out to a slight reduction in calories, but he has been gaining half a pound a week, so it isn't harming him. (He is still gaining).

As the g-tube problem was coming to an end, it was hard not to notice Timmy's color was not as good as normal. Blueish fingers, even a bit of blue coloring in his face. We were told that is what a normal child in Timmy's condition looks like, but it is still abnormal for him. We weren't 'worried' about it, but it was another thing to cause concern and to keep an eye on. Happily, his normal coloring returned after a couple of days.

See, an easy week!

He has been reaching out and playing with things more. He loves to sit up and hold up his head himself. And he enjoys 'talking' and 'singing' to let us know how he is doing. 

Even as we grow more accustomed to our new normal, it keeps changing. But some things don't change. We all love our little Timmy. We all have to work together to make the days work. And we are all grateful that he continues to grow and develop at his unique pace.

Sunday, December 25, 2016

Merry Christmas!

I missed our big milestone the other day, sort of.
I had been looking forward to posting for being home from the hospital for a month, which would have occurred on December 21st in the afternoon. Of course, we left early morning to head to the ER with Timmy to get his G-tube taken care of, so I was thrown off a little. At any rate, I will combine posts. 

We are so blessed to have milestones to celebrate. 8 months old tomorrow. 1 month home from the hospital last Wednesday. Each pound of weight put on. (Even each ounce of weight is still a milestone and a blessing.) 

We have been blessed with a very low key, but extravagant Christmas. We are looking forward to spending some time this morning with friends at church, and, if energy levels and strength allows, my parents will join us this afternoon. Aside from egg nog and making some fudge, we won't have all the trimmings (although people have added a few extras to our basic celebration). And we are blessed with children who are happy to be able to go caroling and handing out cookies rather than worry about what might be missing. You would be hard pressed to find a lower key Christmas than we have. But it is an extravagant Christmas. It started several months ago when we started getting cards from my siblings. They started with things like "We figured Timmy needed an early Christmas this year." Up through this week's card which said "In case no one else had told you, we decided that since none of us need anything this year, we would take what we would normally spend on each other and send it to you for Timmy's care." Many have asked if we need anything. Some have even pointedly asked if our finances were OK. And a few have wondered if I was being truthful when I said that we had no financial need. It has been overwhelming to be in the receiving end of such blessings, but between "Christmas" gifts and many other gifts from friends and family, there is no need. Even with some ongoing expenses of medicines and supplies that we are covering, there is a surplus of gifts sitting there waiting to be used.

Thank you cards have mostly been sent out, but I am sure over the last 3 months that some have slipped through the cracks. I did my best at accounting, but other things took a priority.

And to think that those gifts (as grand as they have been), are nothing compared to the gift God gave us at Christmas. I have a little experience with the birth of a child. A compliment paid me a few children ago was "You are no less excited by this child than you were with your first!" Children are a blessing I don't take for granted. As we have been told that our youngest may only have months to live, it has brought emotion with it that has not been easy to deal with, but is nothing compared to what God the Father chose to endure to save me from my sin. He sent his ONLY Son. Not just to be born in a manger and give us the picture of the nativity to celebrate and enjoy, but to die on a cross, separated from each other by my sin, so that He could cleanse my sin away.

This year, I have the blessing of feeling the joy of the sacrificial gifts people have given toward Timmy's care. I also have the 'blessing' of feeling just a minuscule part of what God went through. Timmy's biography has not been written yet. He may outlive us all! But the sorrow we have dealt with in receiving the news from the doctors of how they see things have given us a faint reflection of what the Father sacrificed for us. We are grateful.

Merry Christmas everyone!

I hope between all the presents you receive and open this year, you'll have time to think about the greatest gift anyone has ever given you. And if you haven't 'opened' it yet? Today would be a great day to receive the gift God purchased for you so many years ago. And if you're unsure how - I'd love to help you unwrap that gift!

Wednesday, December 21, 2016

Busy Day

Look! Here's a picture of Timmy in Rochester.

We started our day a little before 6:00 am when Timmy was crying and his G-tube blew out. Literally, pressure from his stomach pushed the G-tube right out of the hole, and formula came pouring out of his stomach and ran down his tummy. You can't make this stuff up! Anyway, we replaced the tube, and filled the balloon that holds it in. Then, after consulting with the Pediatric Surgical team in Rochester (who suggested we bring him to our local hospital to have him checked out), we loaded up the family, half of our possessions (so it seemed, anyway) and headed off to Rochester.

We arrived at the ER around 10:00 am and got Timmy settled in. They removed the PEG tube (type of G-tube) and installed a Mic-key button G-tube. Then they used a dye to see if the tube was correctly placed. Timmy and I waited an hour after the imaging was done to get hospital transportation to push Timmy's bed back across the hospital to the ER. After that, we waited another hour or two to be released to come back home.

In the interim, we saw the lady who put in Timmy's PIC line, and she absolutely gushed over Timmy - how well he looked, how big he was, how great it was for him to be home and doing so well! We can't deny that was good to hear. We also stopped up to see a friend who is still staying in the PICU with her little girl. We wish she was able to go home, but that hasn't worked out logistically for her yet. Hopefully soon.

Despite being in the car for 6 hours and cooped up in the hospital, the kids mostly had a good day. Jen and I are grateful for the care Timmy got - and the assurance from the medical team up there that bringing him up there was the best thing for him. (Our hospital probably would have ended up sending us up there anyway, and we got there quicker by driving ourselves directly) We saw God's hand of blessings in many ways in our travels, in Timmy's care, in God's timing for all of this. 

We are tired, but we are home and we are content.

Busy morning?

Just a quick request for prayer. Timmy's G-tube came out this morning. We have put it back in, but it needs to be evaluated before we can continue feeds. This probably means a trip to Rochester this morning. Not much time for updating, but prayers are appreciated.

Saturday, December 17, 2016

Good morning!

Some more of the many faces of Timmy.
*disclaimer* I know there are weird shadows, but if I use flash he closes those big beautiful eyes. :)
A friend from church gave him a monkey rattle last night. He's still getting the hang of it.

For some reason, I can't stop taking pictures.

Because his face keeps changing.

It is different between when I hit the button and the camera takes the picture.

But they are all good.

Those were all taken less than a minute before he had a coughing fit and went into his severe distress mode. Hacking, struggling to breathe and everything. It only lasted a few minutes and he was back to being calm for the last two pictures.

Friday, December 16, 2016

How is Timmy Doing?

Yes, we know the big question everyone is wondering and praying about. 

"How is Timmy Doing?"

This is an easy question to answer, and a hard question to answer. Sometimes, Timmy acts well, feels well, and smiles a lot. But even in that, a little congestion or mucus in his throat throws him for a loop and he struggles to breathe and he hacks and coughs and sounds like he is dry heaving. 

Then there are days where something seems off. This week, he wasn't wetting diapers as frequently as normal one day. This is important because if he is not wetting diapers, it may mean that he is holding on to more fluid, and that is a problem for patients with congestive heart failure. The fluid builds up around the heart and lungs and makes it harder for the heart to work and harder to breathe. At the same time, his oxygen sats were going down much lower than normal, and he was panting more. If one thing gets thrown off in his balance of medicines, feeds or how his body is tolerating them, it throws a lot of other things off.

This week's medical imbalance seems to have been related to gas issues, and have been resolved. Timmy is back to being active and content most of the time. All the while, we keep finding out how many things we still don't know about caring for a child like Timmy. The steep learning curve continues. So we continue to ask questions (even ones we have asked before and didn't absorb the answer well), and continue to adjust in little ways to help Timmy out.

We are thankful for each new day and each new smile and strange look that Timmy gives us. 

Tuesday, December 13, 2016

Off to the Doctor today

We weren't scheduled to see a doctor in December, but Timmy's G-tube stitches are causing some inflammation, and probably should be removed. We thought we heard the stitches were dissolvable, but at this point is is clear they aren't. It has made him a bit fussier over the past couple of days, so we asked the visiting nurse yesterday, and she told us she needed a doctor's approval to remove the stitches. So we needed to make an appointment. So, hopefully the stitches will come out today and Timmy can rest a little easier.

He slept better last night than he has been with the help of some ibuprofen, so we are hopeful that the trouble sleeping has just been because of discomfort from the stitches.

He is up over 11 pounds as of his weigh-in yesterday, and continues to look well, and move around quite a bit. His weight is 3 pounds higher than what it was for most of his time in the hospital. His diagnosis hasn't changed, but we are still praying it does, and are thankful in the meantime for having a growing baby.

Tuesday, December 6, 2016

Picture 'update'

He sometimes seems a little far away.

He sometimes plays with his cannula.

He doesn't mind his occasional nebulizer treatments.

And he sleeps a lot.

Friday, December 2, 2016

Another good checkup!

He looks so good!
Dr. Kitchen said it on Monday.
Dr. Orie said it on Wednesday.
The nurse from the VNA said it today. 
They all say he looks really good. Good coloring, good muscle tone, he is really content, he moves around well, even going as far as to call him a little miracle. How else can you explain a terminally ill child with a medical 'rap sheet' that makes doctors say "Oh wow!" and "That is a complicated case," that acts and behaves more like a healthy child. His tests this week did not show any great improvement on how his insides are working, he is still in heart failure, he still has a regurgitation in the valve in his hear, he still has two good sized holes in his heart. But he is happy and healthy.

We are praying for our little miracle to turn into a massively huge miracle. (One that requires the surgeon on his case to do back flips down the hall) We are rejoicing for even the small miracles of a 'healthy' sick child. And we are enjoying all the smiles, snuggles, cooings and all the looks from our baby boy. The future isn't certain for any of us, but when we take it moment by moment, the choices are easy to make. Hold him, snuggle him, sing to him, play with him, and love on each other as a family. We are blessed.

Wednesday, November 30, 2016

Time for bed

Busy day today.
Just a normal busy morning with the feed and medication schedules. Mommy was working on figuring out where other kids were with some of their subjects in school, so the morning went by quickly. We had a 2:00 appointment in Dunkirk with the cardiologist and some blood work - between the two items it lasted 2 hours. Add 2 hours of travel time and a stop at the pharmacy on the way home, and we were gone for most of the afternoon. With 4 hours away from home, we got to try our hand at carting oxygen and feeding supplies with us, and keeping his feeds going on the road. 

Dr. Orie was glad to see Timmy and was really happy with how he looked, his EKG, his echocardiogram, and his weight. It means he is pretty well balanced now and in a good place. It doesn't change his diagnosis, but it means he is healthy, at least on his scale. By normal standards, he is still a very sick boy. He told us the team up in Rochester would probably be asking him how Timmy is doing when they conference tomorrow. He told us they all love talking about Timmy and how much they all enjoy our family. We are glad that Timmy has been able to bring joy to so many different people, and glad that he is once again spreading more of that joy at home with his brothers and sisters.

It looks like we may have next month off from Timmy having any doctor's appointments. It seems strange to go so long, when he spent 8 weeks living with a doctor always near by, but it will be nice to go a month if we can.

Tuesday, November 29, 2016

1 week at home.

Another reason for gratefulness. We have now been home for over a week. With tomorrow's cardiologist appointment, we should be back on track with Timmy's doctors back home. Prescriptions have all been sorted out - probably just in time to adjust them all again.

Timmy has been a little agitated both last night and today, but when he gets settled back down, everything seems to be fine again. We are looking forward to a family picture today and hope that Timmy will cooperate with the scheduled time and being settled for the photo shoot.

I haven't taken any pictures of Timmy yet today, but I'm trying not to wear him out of picture taking before picture time. Don't worry, I'll post pictures again soon.

Monday, November 28, 2016

First Doctor Visit Since Coming Home

First trip out and about since coming home from the hospital is deemed successful.

Timmy is happy and back on feeds and his home oxygen. Less than 1 portable tank was used up for the trip. :)

While at the doctors, Lincare Feeds called (the president) who apologized profusely and asked what we still needed. I told him I thought the bracket we need is coming tomorrow, and he interjects, I have the box in front of me. I started to ask "With the difficulty of getting things to us, what happens if our pump has a problem?" I was no sooner finished than he says "I will put in a complete new pump for you as a backup. What else?" We got all of those things squared away and should be fully prepared for any feed problems that may arise.

Our doctor is working on coming up to speed on 2 months of medical care from the hospital and on getting the prescriptions we need fixed and ready. Blood work is ordered for us to have done in Dunkirk while we are there for a cardiologist visit on Wednesday. All in all, a very productive morning. Timmy enjoyed his trip out and is doing well. At the doctor's office he weighed in at 10 1/2 pounds. A very good morning, indeed.

Praising God for the pile of blessings from today already!

Sunday, November 27, 2016

My type of Sunday

I don't normally get a nap on Sunday, but I do look back fondly on Sunday naps of yesteryear.
Timmy seems to be enjoying the present.

Happy Sunday!

Things aren't moving as smoothly this morning in our house as they have the last 8 weeks.
And this makes for a very happy household.
Glad to have our 'distraction' home. Some distractions are always worth it!

Even so, dinner is cooking, almost all the kids are dressed and ready to head out the door.
And this little guy is talking to us all. 

Saturday, November 26, 2016

Making Home Work

We would like Timothy to be home.
Such an easy decision. Such an easy sentence to say. Making it work is nothing close to easy. 
So we are working on making it work. I noticed yesterday that Jen's tiredness was getting near her breaking point (A very bad place to be in for a pastor's wife on the weekend). You see, since coming home, it has been easiest to keep Timmy downstairs overnight rather than move all his equipment and find room for it in our room. This means Jen has been staying in the living room with him. While caring for a child with tubes and wires and medications, 2 hands are not always enough. This means that I have chosen to stay downstairs in the living room with them. So how do we both get the rest we need? We drafted Larissa (I think she would have signed up for service voluntarily. Scratch that, I know she would have.) So, last night, Jen went to bed early (with the kids) and Larissa and I stayed downstairs to care for Timmy. My plan was to take turns rocking Timmy, patting his chest when he was coughing, moving him around if his nose got stuffy. Larissa had other plans. Aside from giving meds, putting saline drops in his nose to clear his head, and taking him one of the times he was coughing, Larissa took the whole night of duties. I would wake up from time to time and ask her if she was doing OK. I noticed that she slept a little in the chair with Timmy, a little on the couch with Timmy, and had Timmy sleeping in his chair swing and in his Pack and Play throughout the night. And then, after falling asleep around 5:15 (having set my watch to wake me at 5:50 to do meds), I woke up to my alarm with Jen being downstairs and Larissa off to her own bed.

We still had some extra work in juggling how things were arranged in the living room (set up for living in, not caring for a baby in), so this morning was spent rearranging the living room into a caring corner. Now Timmy can be held in the chair, or on the couch with minimal moving stuff around. He can be in the swing or pack and Play and still be connected to the G-tube pump, the Pulse-Ox monitor and the oxygen. The picture was taken as Jen was finishing arranging things so that things will be easy to get to, without being all over the couch. Hopefully, the small increase in efficiency makes 'making it work' a little less work.

Timmy has had a little nasal congestion, but is sleeping well otherwise. He is looking around and content most of the time, and back to being his smiling self often. As always, we are grateful.

Friday, November 25, 2016

It's good to be a little bit redneck.

I mentioned that we have had a few hiccups in coming home. Medications, prescriptions and medical supplies. The saga with the medical supplies included problems getting the pulse-ox machine to the left, and just about everything to do with the feeding equipment. Bags, formula, a pump and a pole were to be here by Tuesday. The formula and bags came Wednesday, with 1/2 of the formula cans broken open and spilled all over the box. The pole wasn't sent, and they told us we could just continue to use the pump they gave us at the hospital. The bag is supposed to hang above the pump, so we rigged the following using a tripod and a mic stand. :)

Still not very portable. Today, the stand came, along with hooks to hang the bag from, but no way to attach the pump. They told me the clamp should have come with the pump (that they didn't send when they told us we could keep the one we were handed at the hospital) Since it can't float in thin air, and the medical supply company is located in Syracuse and cannot get us a clamp until Tuesday, I rigged a clamp, complete with a mounting stud for the pump (which has a female thread on the back like a camera does to go on a tripod).

Here's the close up of my metal tape clamp and mounting stud.

The final result got the approval of all, and the rolling of eyes as 
I hummed the MacGyver theme song.

Apparently, the president of the medical feeds supply company will be calling me Monday because they never drop the ball on important stuff like required medical equipment for caring for critically ill patients. I guess we can feel special that they messed up three times (formula packed badly, the pole not being sent, and not sending the pump with a clamp for attaching). 

It sure would have made the first few days at home quite a bit easier if things had gone according to plan, but we are still making it, and are still very blessed.

Good Morning!

After finally getting him to sleep, he actually slept in his bed for a little this morning.

Then he woke up and was looking around contentedly. (Camera caught him closing his eyes)

And right after I took the picture, he changed from happily looking around to having a little coughing fit. He has a little head congestion, and the air through the canula really dries things out, making it tougher to breathe on him sometimes. It only took about 15 minutes to settle him out, and he is back to being content as his older sister is rocking him.

Mom was up a lot of the night, some out of concern for his breathing, some out of his desire to be held. She passed him over at 5:30, had part of her breakfast, gave Timmy his 6:00 meds and headed up to bed for a nap. Hopefully she will get enough of a nap to get her through the day. I'm sure she can get another nap if she needs it.

We are hoping that Timmy's congestion is just from the nasal canula air being too dry, and not a cold or cold like virus. His little boy has to work so hard as it is, that just a simple cold is that much harder for him to handle.

As for the family, we enjoyed our Thanksgiving foods. The turkey was found on our turkey melt sandwiches, we had freshly prepared cranberry sauce (which went great on a turkey melt, by the way), and pumpkin pie with whipped cream for dessert. Not the normal, but a doable semblance of the normal. There were no complaints from any of the kids for our non traditional dinner.

Thursday, November 24, 2016

This one is worth way more than a thousand words!

Thankful for Our PICU family

This is a sign made up by a friend for our PICU family to sign for Timmy.
We didn't get everyone's signatures, probably closer to half of them.
Thinking of them today as many spend the day caring for other people's loved ones while being apart from their own families. It is truly a wonderful group of people represented on the sign.

A typical day

I know this is a bad picture, but this time of the morning is bad for taking pictures. 😃
This was one of the 'rejects' from yesterday.

If the day starts at midnight, we have to start the day with snuggles. Sometimes Timmy sleeps well, but sometimes he needs snuggles. Jen had Timmy until about 3:30 this morning. I woke up and noticed his feeding bag was getting low, so I got up, warmed up his food, and restocked the bag with the right amount to be able to add his potassium Chloride at 6 am. After Jen changed his diaper, I gave him some ibuprofen, and we vented his g-tube, I grabbed him so Jen could try to get some more sleep. At 5, I heard footsteps upstairs, so I put a sleeping boy in his swing and went to check. 2 boys in need upstairs, and by the time I returned downstairs, Timmy was back awake, and Jen didn't want my offer of help. 😉 I went to lay back down, but realized he had medication coming at 5:30, so I prepared that and gave it to him. Almost laid down again, but he has 5 meds due at 6:00. 1 goes in his feed bag mixed with his food, 4 go directly in his g-tube. So those are prepped (carefully measured into syringes and capped) and ready. With 15 minutes before dosing, I decided to give you a peak into our day. At 7:00, Jen will pump as all food must go through the g-tube. She will pump every 3 hours throughout the day so that we can prepare Timmy's food by adding powdered formula to the breast milk. At 8:00, Timmy gets more meds. By this time of the day, our oldest daughter is firmly entrenched in snuggling with Timmy. Meds are also given at 2 pm, 6 pm, 8 pm, and 10 pm. By tomorrow, meds will only be given at 6 different times (the 5:30 dose is one that is getting slowly moved). His food (fortified breast milk, or 28 kcal per ounce formula) gets mixed up several times a day. It is only good for 24 hours after mixing, and the breast milk can only get fortified as it becomes available. The medication bag that holds the food for the pump to meter into his g-tube gets changed once a day.

Besides feeding at administering medications, Timmy's g-tube requires cleaning, checking and care daily. Then there is just the normal care of an infant of diaper changes, snuggling, and keeping the household going. We are adjusting to the new normal, and this post should not be construed as a complaint - we are still blessed beyond measure. As we have had 8 very healthy children for the most part, it was an eye-opener to us to see what parents with children who have medical needs go through on a daily basis. Even with our modified schedule, we will enjoy Thanksgiving as a family together. For this, we are extremely grateful.

Happy Thanksgiving from our home, to yours!

Wednesday, November 23, 2016

Reasons to give thanks!

I love the many faces of Timmy



All tuckered out

Of course, all three pictures were taken within a minute of each other. His face just goes through so much expression all the time.

Tomorrow is Thanksgiving. A day set apart in the United States of America to give thanks. Initially, it was a day to be thankful to our creator. Today, aside from the addition of thankful posts during November, it is hard to tell. It is a big day for grocery stores and all types of retail. Our Thanksgiving is going to be a little more low keyed this year. The first plan was to have mom and dad bring in much of dinner and enjoy it at our house. I am grateful for plan 'B'. Mom and dad called to ask if the first plan was still a good idea, or if it would be better to have time to adjust to being at home still. Truthfully, I was getting overwhelmed at the thought of the number of dishes of food our simplified Thanksgiving would represent. Even without having to make most all of them, it was just overload. But I think my mom put it best - "Our Thanksgiving was when Timmy got home."

We've had prescription mishaps, tons of phone calls from doctors and nurses and suppliers, had to make multiple doctor's appointments, and had to adjust to the new normal around our house. And we aren't adjusted yet. It will just take time. But we are thankful. Tomorrow's meals will be nothing fancy. Much of tomorrow will look like today. Medications at 6, 8, 2, 6, 8, and 10. Mixing up feed and monitoring the food pump and the oxygen concentrator. But we will have what Thanksgiving ought to have. A gratefulness that our needs have been met, and beyond that, we have many of the desires of our heart. My family is all under one roof (and driving each other crazy again), Timmy is being cared for and is a joy to each of us in the house. We have many loving families that we are a part of: Hadleys, Allens, church, town, and many different providers in the medical community that treat us like family.

We won't be breaking a wishbone tomorrow, or fighting over the last piece of chocolate pie (my preference over pumpkin), but we are blessed.

Tuesday, November 22, 2016

Where Do We Go From Here?

I caught Jen without a smile, but she was enjoying gifts that the kids had made for her and Timmy to welcome them home. This is a mobile made of stuffed 'airplanes.'

Timmy was fussing, but I love all his faces. It is good to know even Larissa doesn't always have him in cheery spirits.

So, where do we go from here? 
First of all, where is here?
Here is with Timmy, at 7 months old with AV Canal Defect, a leaking valve, in heart failure, with one side of his heart too small, and very high pulmonary pressure. Here is just weeks after a pediatric thoracic surgeon who specializes in congenital heart defects told us that none of the surgical options we have talked about will work for Timmy. Here is arriving home from the hospital with a child getting fed through a g-tube, breathing with the assist of a nasal canula with oxygen, and taking several medications several times a day to help with his symptoms. The surgeon has told us that he expects Timmy has months to live rather than years.

So where do we go from here?
We go forward. Every life is precious and no life comes with guarantees. Doctors can be wrong, God can intervene, and in reality, this makes Timmy no different than our other children. We have no guarantees for any of them. We have friends who lost a young child, friends who have lost a teenager, and friends who have lost an infant. Life is not guaranteed, death is guaranteed for all of us, just with an unknown time table. So, we move forward. We care for Timmy and meet his needs the best we can while balancing the rest of the family as well. We continue to pray that God would perform a miracle for Timmy and bring healing to his heart that the doctors are unable to do. We continue to live our lives and try our best to do so for the glory of God. Really, just the same things God wants us to do in any of our circumstances.

It has been a long day with many interruptions. I started this post this morning. We met with the Visiting Nurses Association nurse that came to the house. I made a few trips to town to run errands and order and then pick up a missing medication. We called to make doctor's appointments, and took calls checking in on things and tried to get the rest of the details of being home ironed out. We got instruction on how to operate the oxygen and pulse sensor for Timmy. And we went about our normal business the best we can. On top of that, we fielded calls from the hospital, from doctors, from medical supply companies, from pharmacists, and from telemarketers (yes, those plurals all mean more than one of each). 

Monday, November 21, 2016

We Are Home!

Timmy was a little fussy, but mommy and Timmy are home.

Larissa is enjoying her view after 8 weeks of no Timmy at home.

We had a few hiccups so far. A medical supply company that couldn't deliver a piece of equipment, but failed to tell anyone until asked specifically about each prescription. (The PICU home people have already remedied it by ordering from another company and we will have it tomorrow) Two of Timmy's supplements are missing and we could only get one filled at this late hour. All efforts to secure a compounded sodium chloride solution have come up empty and will have to wait until tomorrow.

Now that we are home, we have a request. Please do not drop by for a visit. Between the VNA and paliative care coming in, feeding schedules, learning the medication routine for Timmy, and tracking down missing prescriptions and equipment, we are swamped. We need some time to learn the routine, to figure out how we can make this work. A visit at this point would be more of an interruption than the blessing that you might intend for it to be. Thank You.

I also want to thank a few people who made today easier. Heather from the hospital worked extra hard to secure all the stuff Timmy needed to get home and even took up the enraged stance at the ball dropping done by the medical supply company to save me from having to get my feathers ruffled. And Pam from the Walmart Pharmacy in Lakewood filled the prescription she could of the two we needed, and asked about Timmy. Not because she knows him, but because she has filled prescriptions for him before and she wondered how he was doing. After a short conversation, she told me that she would add her prayers to ours for him. Several others just continued doing what they have always done. Be here for our kids, take care of Timmy & Jen, help provide for needs, and just loving on our family in general. Even with the hiccups today, we are blessed.

Someone's happy to be going home

Ok, a few people. Barring any equipment or weather hiccups, we should be headed home this afternoon.

We're ready, but are playing today by ear a little. Hopeful, very hopeful.

Sunday, November 20, 2016

Answered prayers

I know, he isn't smiling. But he had been, and my efforts to capture a smile with the kindle's camera came up short, so I picked a good frown. Not as good as some of his frowns, but still cute.

As for the answered prayers:
Timmy's heart rate stayed better today
Jen and Timmy had a more relaxing day
Brian and I had a safe trip up (and hopefully back for Brian)
My parents had a safe trip down to watch the kids
Everything still looks in place to bring Timmy home tomorrow

It feels weird to finally be coming home to be together as a family. Nice, but weird. We are going home, but we are leaving behind other 'family.' Our PICU family of nurses, doctors, cleaners, food service, reception, and other support staff. Our RMH family of staff and volunteers. And our family of others who have been going through medical trials. We will miss them all. Despite all this, tomorrow looks to be a very good day, and we are grateful.

Praying for a good day!

Timmy looks to be a little tired this morning, but otherwise doing well.

His heart rate has dropped a few more times overnight, but doesn't seem to be causing any problems. His oxygen saturation of his blood stays in his normal range despite the decrease in pulse.
He enjoys being in his chair better than the bed most of the time. It sits him up and he can't wiggle down like he does in the bed which makes him uncomfortable.

Saturday, November 19, 2016

Fine for now

The doctors said they would keep an eye on things, but they did not seem to think it was cause for too much concern. Jen is headed back to the Ronald McDonald House to do some laundry and go to bed.

They thought the dropping heart rate is probably not related to the medicine they were changing over today, but didn't really offer any suggestions as to why it was happening. 

He looks a little tired, but sometimes it just depends on the instant that the camera on the Kindle takes the picture.

Cause for concern?

We don't know what to think yet, but Timmy's heart rate has been dropping when he is sleeping. It happened last night, but is happening more often this evening. They have the alarm set to beep when his heart rate drops below 80, and it has several times. The nurse has called the doctors that are on (PICU and Cardiologist), and they will be by shortly. I will update when I hear something, but we would appreciate prayers.

A good night and a good morning

Just 2 more of these days and he should be able to wake up at home. 

Still a lot of things to fall in line - prayers are much appreciated to get this little guy home.
After almost 2 months in the hospital, we still realize how blessed we are. We will leave behind families we have gotten to know. A girl who is 6 months old (maybe 7 now), who has never been 'home' from the hospital, but is expected to go home in the next week or so. A little boy who was born the day after Timmy got to the hospital who has had 1 surgery and has several possible in his future. He also has not been home from the hospital yet. Babies less than a week old who have had heart surgery, babies going in for second surgeries, babies with breathing issues related to heart problems . . .

Every story is unique, but every story is similar. This is what makes us all family. We continue to seek to serve those around us with a listening ear, encouraging words, and even treats for those who have cared for Timmy. (I found out many of Timmy's nurses and the PICU staff agree with me that gooey brownies are the best!) 

We are still praying for a miracle for little Timmy. 
He has been such a blessing and continues to be. 
I cannot overstate how much we are ready for him to be home.