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.

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.

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!

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. 

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.

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.

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!

Reasons to give thanks!

I love the many faces of Timmy

Smiling

Thoughtful

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.

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). 

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.

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.

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.

I like the new normal!

This just looks much better!

Today they will change over Timmy's last medication to the g-tube, and work in getting things balanced in his feeding and medicines so that he can go home.

Home care is working on getting all the equipment and prescriptions together. Still room for hiccups, but still looking like a Monday release.

Yesterday, we set out some homemade soaps for our PICU family to enjoy (75 bars or so), and today we brought in brownies. We are not used to being on the receiving end for so long and having so much given in terms of Timmy's care (skilled nursing, doctors care, respiratory, pharmacy, child life services, administration, food services, music therapy, home care, etc.) So we just want to find ways to give a little back.

Thankful Thursday

Timmy is sleeping without extra sedatives, he has been responding well and looking around a lot since losing his breathing apparatus earlier today. On top of all that, they have set Monday as his discharge day! A few more details to work out and figure out, but today is a very good day. Certainly an easy day to be thankful of. 

Praise! That's what I like to see!

Timmy is off the ventilator and doing well. This picture is long overdue!

Test results were good!

One of my children says "He's looking at his vent tube!" So maybe he knows the plan is to get rid of it today, too. The tests were good so they will be extubating today. Still not sure when, but late morning or early afternoon would be my guess.

Prayers much appreciated today

It almost seems unnecessary to say that prayers are needed - we have needed them every day of the last 7-8 weeks. At the same time, today is the day that they are planning on getting Timmy off of the ventilator. We are not sure when they will do this, and are unsure of how long it takes to do it, but would appreciate your prayers throughout the day. Just as intubation (putting in the vent tube) is a risky procedure, extubation has its share of risks as well. We know that this too is in God's hands. I will be driving up this morning, and then, if things are in order, they will extubate today.

Plugging along

Apparently, someone donated some stuffed Christmas dogs to the patients in the PICU. I think it is bigger than he is.

Here's Timmy after his bath today. He is still struggling a little with the medications and getting them adjusted. They are also working on winding down the ventilator to be able to extubate (remove it) in the near future. 

We're still walking day by day. Some moments better than others. After being spoiled last week with being able to be together all week, I think our 'normal' weekly schedule is taking a bigger toll than it normally does. We are looking forward to being reunited in the morning.

A rough afternoon, but better this evening

Timmy seems to be struggling still with some withdrawal symptoms from time to time. He was awake for several hours this afternoon with a high respiration rate, even after getting his sedatives. He did settle down around 5:30, and things were looking better going into this evening. Just a reminder to us that the medical steps taken will have some lasting results for a while that we may have to deal with.

Jen was having a rough day with helping trying to settle Timmy for several hours and working with the nurse to find a solution. I guess God knew it would be a good day for these to arrive for "Timmy's Mom"

She said they brightened her day and that getting a 'hug' was nice, even if not as nice as the one when I next make it to Rochester. The staff and other guests at the Ronald McDonald House enjoyed the flowers, too (since they couldn't be delivered into the PICU). At least they enjoyed them until Jen got back and brought them to her room.

Another move

Many at the hospital keep picking on us and asking if we finally like the room we are in. We started in PICU room 12, moved to PICU 13, to 8 North room 13, to 8 north room 5, to PICU 12, to PICU 17, to PICU 20 (the 'bay'), to PICU 15, and now, to PICU 13 once again. Some of the moves were made fro Timmy's benefit, most were made for making room for other patients or 'grouping and staffing' issues.

The nurses caring for Timmy have been covering rooms 14 and 15 - which was strange because the mini nurses 'stations' in the hall sit between rooms 13 and 14, and between rooms 15 and 16. This means the nurses have had two desks to sit at on their shift, and could never be right outside the door of both rooms. Now, rooms 13 and 14 both have patients with relatively few needs that are both preparing to go home. It should mean that Jen will be able to rest easier because the nurse will always be right near by.

8 moves, and this is our 8th week in the hospital. I guess they are keeping things from being boring.

Progress towards home!

Look mom! No tubes in my nose!

He still has the vent tubes and the pic line in his arm (only 1 medication going through it now) to play with, but we are making progress toward coming home.

I watched week by week and sometimes day by day as new tubes and wires were added, and I approved of each step. Now I cheer each step we take toward Timmy being able to smile again with his big full face smile that melts hearts of all who see it. Now I celebrate each time Timmy gains back mobility so he can play with his hands or hold my finger. We walked down the road to get answers, now we look forward to being able to love on our boy back home. 

They are beginning the process of turning down the vent settings to be sure that Timmy can handle breathing on his own before removing the vent tubes. If this goes well, it is a 2 day process from where Timmy's settings on the ventilator were. Step by step, inch by inch.

I was so close to scooping him up yesterday, but we have his medications pretty well balanced and I didn't want to upset anything. But once they get those tubes out of his mouth, I'm going to have my arms full of Timmy. I know I can say the same for Jen.

Another Round Trip

I wasn't in the room with Timmy with the camera today, but I got to look into his eyes and hold his hand. He got lots of kisses, he got sung to and talked to, he got prayed over, and he took a nap.

It was the day to bring the kids up, so the 8 oldest got to see their mother.

Many of them have sniffles, so we thought it best not to have them in to see Timmy today.

The update for today is that Timmy's feeds in the g-tube are going well. The diuretics are all switched over to the g-tube, and the weaning of the ventilator starts tomorrow. If everything is done perfectly, without setbacks, the ventilator weaning could be complete in about 2 1/2 days. That is a big IF, it could take significantly longer. After the vent weaning, there is the matter of the final two medications being changed to medicines he can come home with, and making sure all the supplies and caregivers (us) are ready for Timmy to come home. There are a lot of details, but also a lot of people working out the details to make things happen. On top of that, we have a God who is orchestrating all the details according to His plan and His timing.

 We continue to be grateful for all of the above.

Step by Step

Timmy's feeds are all going in the g-tube at this point. The n-d tube in his nose should be coming out soon, but they leave it there to make sure the g-tube feedings are going stay going well.

For today, pray that things go well with Timmy's new medication schedule and that he is able to get the rest he needs. Tired babies are cranky babies, and tired babies with tubes up their nose and down their throat make for very cranky babies. It also makes for a worn out mommy.

Updates

Timmy was a little sleepier today than they want him to be since they moved his meds from the n-d tube to the g-tube (stomach instead of intestine, so it absorbs better). The solution is to give him 1/2 doses and stretch the meds out to 8 hours instead of 6 hours. It seems like this may be a drastic reduction (mathematically - 37.5% of the medication he was getting), so we are praying that he does well with the new adjustments. It would be nice to have him on lower doses now.

Timmy's feeds are almost completely moved over to the g-tube, and he seems to be doing well with them, so that will make one more step checked off on the 'going home' checklist.

As far as the other kids, I finally got to sit down with them and talk to them about where things stand with Timmy. (No surgery, and unless God intervenes he might not be with us long) Either I am really good at explaining things, or some of the kids are just processing. The older two have known since last Thursday, and some of the others might have put 2 and 2 together, but I could see on some of their faces that it was hitting them hard. Please pray for them as they process all of this. The first response of the kids (from the 3 year old, of course) was that we should pray for Timmy. I waited until today because I had the kids alone and at home, and 4 days with them before my parents come to watch them again. Hopefully, they will get the questions worked through in the next few days.

Jen and I are doing well. We enjoyed a whole week together up in Rochester while my sister and her husband were up (on top of grandma and grandpa taking 2 days and nights with the kids). It was nice for us to process together and be able to talk about all the options that are before us. We are on the same page, which helps immensely. We are praying things move along so that we can all be back together at home soon. We'll take what comes and be thankful in all things, but quickly getting home would be a super big blessing.

Thanks for all your prayers and support. We can't begin to thank everyone for all the love that has been showed to us. We are very grateful for great friends, families, and even friends we haven't actually met. God has been very good to us,

A slightly 'bumpy' night

We have learned that for every adjustment, it normally makes several more adjustments necessary. So far, the second attempt of changing the feeds over to the g-tube appears to be going well. His sedatives are also going in through the g-tube as of today, so there is monitoring there, as well.

The bumpy night came after an excellent day of him being awake more and looking around a lot. He got quite agitated during the night, requiring a couple of PRN (Pro re nata - as needed) doses of extra sedatives. The PRN doses are only used as needed, and give the nurses some help in keeping Timmy relaxed. The feeling is that the agitation may be withdrawal symptoms from coming down off of higher doses of the sedatives, but I guess we can't know for sure.

We know what the path looks like to get Timmy home, but we have no idea how long each step will take. It seems like there are a mountain of things to get ready before he comes home, but we just have to remember to take the steps required of us today. God's grace is given much like Timmy's extra sedatives - in those PRN doses. I'm so glad the one who administers the grace also decides when and how much is given, just as I am glad that the nurses caring for Timmy are instrumental in deciding when he gets some of his medications.

Glorifying God with t-shirts?

We continue to aim to glorify God in all things. One way we have chosen to do that is with t-shirts. We have ordered shirts and are getting them out to our siblings, nieces, nephews, and parents. (Timmy's aunts, uncles, cousins and grandparents)

We have had people ask about the shirts, so we have reopened the ordering on the Booster web site. The shirts will be available for purchase for the next week. Shirts can be shipped to us if you want to avoid shipping and get them from us, or you can have them shipped right to you.

If you would like one, you can order them here:

https://www.booster.com/heartoftimmy

Some more pictures this morning, because I can

Can't help myself.

A healthier looking boy - awake and acting normally.

And enjoying his chest PT (helping to loosen mucus)

Two steps forward . . .

They tried to switch the food over quickly, but Timmy had some extra gas in his tummy, so they had to restart the process. This new attempt will last into tomorrow, so we don't anticipate any other changes to take place over the weekend.

There aren't any estimates that have been given to us as far as a timeline, but we are hoping for a two to three week process to get him ready to come home. Shorter than that would be surprising, and longer than that is certainly possible.

God is good through it all, an He is at work in many different ways. To Him be the glory!

Baby steps

This is a good picture. It has Timmy, but it also has the first draft of Timmy's home care binder. This is our next focus, and it is nice to have the tangible proof that the hospital staff is working that way too.

Timmy is awake more often, and doesn't seem bothered by all the tubes,  although we are looking forward to losing more of them. The ventilator days are numbered, although that step is a few steps out. Converting his medications to coming through the g-tube will happen first, then weaning him from the vent, finally changing over one last medication are the steps as we currently know them. Feeds are currently being switched over to the g-tube, so progress is being made. How long the steps will take is anyone's guess. 

Still trusting God for daily grace, strength, and health. Still looking for miracle. Still thankful and rejoicing in God's goodness. Seven weeks ago things looked really bad, and today we have a plan to bring Timmy home. We are blessed.

A small 'Thank you'

Timmy is doing well this morning. The plan to get him ready for home is being laid out. He is recovering well from the g-tube placement yesterday.

We wanted to show the nurses and PICU/PCCC staff that we appreciate them, so I got up early and made sweet rolls and sticky buns for them all. I imagine they won't last long. 

Back from surgey

Timmy is back, with his new g-tube installed and still resting well. They were happy with how things went and will be restarting his feeds. We are just praying he has a good night.

Empty room for surgery

2 hours or so until he returns.

Yesterday's visit

Bedside with the siblings

The other kids on a walk with mom and dad.

Timmy's morning pictures

Mommy snuck a picture while daddy was singing to Timmy.

He's alert and ready to be knocked out for his procedure this morning.