Clogged tube again - please pray!

Timmy seems to be teething again, so I put some infant Tylenol into his feeding tube. Apparently that's pretty sticky stuff, and the tube is once again clogged. Lauri and I are trying desperately to unclog it and avoid a trip to the ER. Please pray that we won't have to go to the ER, and that if we do, that the Clog Zapper treatment will work again and Timmy won't have to be poked until we can plan for it better.

Thanks for your prayers!!!
Lara

Update:  10 PM

Timmy is still at home and sleeping.  We have worked with the doctor to find a way to get him hydration and meds and sleep overnight.  In the morning if the tube is still clogged, then we will need to go into the ER.  At that time, we will try the super duper clog buster stuff that worked last time.  If that doesn't work, then I think it will require a trip to the OR to replace the tube.  :-(

Found from the hospital: Motorola phone charger

I'm working on a more interesting post, but for now I am wondering if any of you who visited us in the hospital are looking for a lost Motorola phone charger? I am still sorting through the stuff that we brought home from the hospital, and it was in there.

Enjoying our new wagon

We used several different birthday gifts to buy Timmy a fun wagon for walks around the neighborhood. It even has a sun shade and a rear storage bin that is perfect for carrying his feeding pump.

Home again

We got home around 9:30 last night. It was a good trip. A very good trip, I would say.  Sadly, there was no promise of a miracle cure.  However, it was great to talk to someone who had so much experience with mitochondrial disorders.  It was helpful, although perhaps not what we wanted to hear, to know that he agrees that it most likely is Leigh Syndrome.  He suggested some vitamins and supplements to try that have given some very good results in other kids.  He said that the odds are good that Timmy will live 1-3 more years.  If he gets an infection, that could shorten that time frame greatly.  Or he could be one of the kids who hangs on a long time.  In the end, we know that the Lord is the one who numbers our days, but that at least gives us an idea from an earthly perspective of what the future MIGHT hold.

When we left, I had many fears about the trip.  And I am thankful to say that the Lord provided.

Before we left:

• I was stressed over how I would ever get everything packed in time.  (Cindy came by and spent the whole day here on Monday and helped me get everything together and also helped me make sure that Timmy got his naps.)
• I was stressed over the details of managing Timmy's meds and feedings on the road. (There were a few small glitches but we got through them.)  
• I was scared that Timmy wouldn't get enough rest (he mostly did), especially at night in the car (he fussed until I thought he might puke or have a seizure and then he fell asleep instead - in both directions.  Then he woke up just 5 minutes or so before we got to our destination).
• I was fearful that he would puke or have seizures (he didn't do either).
• I was afraid that we would go all that way and then only end up seeing the doctor for a few minutes and that he would be in a hurry to see the next patient (he stayed with us for over 3 hours and answered all the questions we could think of!).  
• I was afraid that Timmy would get poked a lot (especially when I saw how many vials of blood they wanted), but they were able to get tons of blood for lots of different tests with just 2 pokes.  The other test they did was with a saliva sample from the inside of his cheek.  How easy is that!
• I was afraid that the doctor would really push doing a muscle biopsy, which we are just not sure if we want to do.  (Yes, of course he recommends it - and he explained the reasons for it.  And then he simply suggested that we discuss it and let his nurse know what we want to do.  We still have not decided, but I appreciate having the time to think it over.)

Arrived safely

On the way to San Diego

We just left the house and are heading to San Diego to see a
mitochondrial disease specialist. We have a room reserved at the
Ronald McDonald House tonight and then we have our appointment
tomorrow. Please pray that Timmy will sleep in the car on the way
there and back and that it will be time well spent.

So far no puking today

Today has been going great.  No episodes of stiffening or puking.  Decent naps.  The feedings are at 45 ml per hour with 5/6 formula and 1/6 pedialyte.  So that is almost back up to the goal amount of formula.  I confess that I get nervous just thinking about adding that final 1/6 of formula.  But it amazes me how much better Timmy does when he is actually able to get nutrition and keep it down.  He is just more smiley and interactive and sometimes it seems to even help his head and torso strength.  It convicts me to eat better.

Please continue to pray that he will get good naps and good nutrition that he can keep down.  Thank you again for your prayers yesterday. I am so thankful that we didn't need surgery to replace the tube and that we are home again.

Going home!!!!!

It took a while but the tube is unclogged and we are headed home.  Thank you, Jesus!!! If it had not unclogged, it would have meant another surgical procedure so we could not be more thrilled. Thank you, thank you, Jesus!

Prayer request: Clogged feeding tube

We are headed to the hospital to get the super de-clogger treatment.  Please pray that it will work quickly and that Timmy won't need to get poked.

He likes Diet Coke

Timmy's tube is clogged. Please pray that we can get it unclogged easily. One random nurse trick for unclogging tubes is to try to put soda into it. Of course in our house, Diet Coke is usually available. He seemed interested in it so we gave him some. He liked it!

More photos

For those of you who are interested, Nana has posted the pictures from their California trip to her Flickr account.

(Note: Some of the pictures -- particularly of the G/J tube and the surgery -- are not all that pleasant. If you or your children might be bothered by that, you may want to stick to the first 8 pages or so.)

In honor of Nana's pictures, I have included the picture she took of Timmy at his party as everyone was singing "Happy Birthday." His huge grin just shouts, "Everybody's singing for me??!!? I love singing!" That was one of Mama's favorite moments!

And speaking of the party, thank you all so much again. That was just a really special day for our family. Timmy was doing so well and was so excited to be the center of attention. We really appreciate each of you who organized or decorated or sent gifts or cakes or participated in any way. Don't forget to look at the pictures in the photo gallery. If you have any more to add, you can either choose "upload" or email them to me and I'll do it!

Life at home

We are slowly settling into life at home. After a call to GI, we are making some adjustments to Timmy's meds, so that should hopefully take care of the puking. So far so good today.

Also a home health nurse came by to check on us today, and she was very nice. She had done her homework ahead of time and actually knew what a mitochondrial disorder was! She seemed thorough and kind. I am glad to hear that she will come by once a week for the next few weeks.

As always, please pray for wisdom and for no puking or seizures. Please pray for us all as we adjust to this new normal. He is doing so much better than his lowest at the hospital but so much worse than the last time he was home. I think that the change in location points out the behavioral and physical changes all the more. It is just so hard to see him be so weak. I miss him holding up his head and standing and being more interactive. He is smiling and giggling a little bit though, which really does an emotional world of good. I know it is a good day if I yawn and he laughs at me. For some reason he has always thought that yawns are SO funny - especially loud, exaggerated yawns.

Brutus takes control

Napping success!

Timmy slept through the night and so far has not puked today.  I am thrilled to say that after an hour of rocking and dancing and singing, I was able to put him down to nap in his crib.  So clearly I need to shower while the getting is good!

Bye bye Nana and Papa

Who knows if he really meant to wave? But either way it sure was cute!

Saturday Afternoon Nap

Brutus's welcome greeting

Arriving home on Friday

Life at home

Wow. Life at home is quite the transition. It probably is for EVERY kid that is in the hospital for a long time. But it has already been quite the blessing and the challenge. I have already cried tears of both extreme joy and extreme frustration/stress - and it hasn't even been 24 hours yet!

Yesterday after we got home, Timmy had a lot of vomiting. In a moment of panic, I called one of my nurse friends and she kindly reminded me of what things the doctors have done in the past when this happens. Sometimes we just need someone to help us to stop and think. Clearly, Timmy has puked before. And each time it happened before, we followed the same pattern of care. So I will try to do that same thing at home. Although I appreciate the doctors and nurses, it is difficult to describe how much damage the chaotic atmosphere of a hospital can do to a kid with a mitochondrial disorder. Unless I am sure that there is a specific thing that Timmy needs that can only be provided by the hospital, I do not want to go back.

Thankfully, Timmy slept most of the night last night. Today we resume our daily routine. I will be working towards putting his body back on a normal sleep and play schedule. This means that for now, we (Lara and Timmy) will not be taking visitors or phone calls from 9-11 AM and 1-3 PM (and 5-6 PM as needed) each day. I notice that sleep makes a HUGE difference on Timmy's strength and also his agitation/relaxation level. So we will be taking at least these 4 hours each day so that we can rock and cuddle and sing and slow dance (and hopefully SLEEP).

Please continue to pray for wisdom for me as I become Timmy's primary caregiver.

As I was doing some research on mitochondrial diseases, I found this quote to be very interesting:

Statement from Chuck Mohan, executive director and CEO of the United Mitochondrial Disease Foundation on reports of possible links between childhood vaccinations and mitochondrial diseases:

"There are no scientific studies documenting that childhood vaccinations cause or worsen mitochondrial diseases, but there is very little scientific research in this area. Mitochondrial diseases are as prevalent as childhood leukemia, however the National Institutes of Health devotes only $11 million a year to research into mitochondrial disorders and only about one-third of that is earmarked for primary mitochondrial disease research. Many scientists believe unmasking the causes of mitochondrial disease may lead to possible cures for Parkinson's, Alzheimer's, heart disease and cancer."

(From Medical News Today)

On the way home

Heading to the car

Here is Timmy and Nana with the new backpack feeding pump. Heading to the car now.

Waiting for the feeding pump lady

The doctor came through, Nana and Papa are here, and now we are waiting for the feeding pump to arrive.

Ready to go

Our bags are loaded into the hospital wagon. Nana and Papa are on their way over. We have our prescriptions. So as soon as the feeding supplies are delivered and the doctor answers our final questions and signs us off, we are OUT OF HERE. Hopefully it can happen before the heat kicks in outside.

Going home tomorrow

The GI doctor agreed to put us back on Nutramigen for at least a month so that we can still go home tomorrow.

New formula

They put Timmy on the "big boy" formula and he had an allergic reaction. Please pray for wisdom as we decide what to do next.

With Aunt B

Smiles

A good night

We had a great night. The nurse gave him a regular dose of Tylenol overnight, and Timmy slept until 7 am! He is awake and cheery this morning. A subtle thing to notice in this morning's picture is that Timmy is turned (by himself) to the right. When Timmy is in pain, he keeps his head turned to the left and does not want to look even to the middle. So this is really encouraging to me.

This morning, Timmy will start to get food through his new tube. We will start with Nutramigen. Then we will see what timing the doctors suggest for changing to a formula that is more appropriate for a big one year old like Timster.  Hopefully we can go home real soon, but I'm not sure exactly when.

Surgery Day: End of day report

Today's picture is Nana giving Timmy his pre-surgery bath. As you know, Timmy had his surgery today. In the end it was a laproscopic procedure, and it went well. Timmy had a little bit of vomiting and one short seizure after the procedure was over, but the last several hours have been great.

It is so nice to have Marshall's family here this week. We have moved from party mode to surgery and recovery mode. The aunts and uncle and cousin have been helping around the house and coming to the hospital off and on for visits and to give Mama some time off. Yesterday we took Timmy out to the courtyard in a wagon so that we could all eat pizza together there. It is especially very fun to watch the cousins interact.

Then of course there is Nana and Papa. They have been great at being a support at the hospital. They even were willing to go out of their way to get me my comfort food after the surgery, which meant making an extra stop. Ah, it was so good. And Nana is a great person to help me be an advocate for Timmy and ask all kinds of questions to just be sure that things are done well. For example, Timmy's seizure came just after he received a certain pain med. The nurses insisted that it was not related, but the next time they started to give that med Nana was watching and noticed that he started to get a bit agitated. So we stopped the med before he got very much of it and all turned out fine. We were able to get an order for a different pain med. We don't know for sure that he would have had another seizure but I feel better not knowing.  :-)

It is such a blessing to have friends and family around who love us and are taking such good care of us. We are so thankful for all of the family members and friends who have come from both near and far to love on us in this challenging time. Thank you again to all those who have visited us, prayed with or for us, been an advocate for us, given me time off, lent us a car, given gift cards or birthday presents, taken out our dog or done our laundry, or helped in any way to put together such a very special day for us on Sunday, just to name a few. I hope to be organized enough to get out thank you notes soon. But if I am not that organized, please know that each and every one of you is just so appreciated.

Well, Timmy has been asleep for a while now so I should try to do the same.

Love to you,
Lara

Surgery successful

Timmy went in for surgery for the J-tube at around 11 AM, and it was a success! We're told he did very well. He no longer has the tube in his nose; there's a bit of a rash on his cheek where it was, but that should clear up soon.

They put a larger tube into his stomach, and then used that to insert the smaller J-tube. In a couple of months, he should be able to have the larger tube removed and replaced with a "Mickey button", which will make it a lot easier to cover up.

Timmy will need a few days to recover and to make sure everything's healthy, and then hopefully we can go home by the end of the week!

Going down now

It is 10:10 and Timmy is about to go down for his surgery. Please pray for the doctors and for quick recovery from the anesthesia.

Surgery scheduled

Timmy's surgery is scheduled for 10 am tomorrow. Even if it doesn't happen right at 10, the key is that we actually have a time slot. Yay!

Surgery postponed

The GI team got too busy today and postponed Timmy's tube placement until tomorrow.

Here is a picture of Timmy with Aunt Ingrid. :-)

Feeding supplies and surgery

It is 10:20 am and we still don't have a surgery time (and of course Timmy is hungry because we are not feeding him in preparation for the anesthesia). But we have a good nurse today and she will keep bugging the right people.

And... (drum roll please) as soon as the papers are typed up and signed, WE HAVE BEEN APPROVED FOR FEEDING SUPPLIES AND FORMULA!!! That takes off a huge financial burden. Praise God!

Share your pictures!

We didn't take many pictures ourselves from the party yesterday, but we've started an online photo gallery with a few that we'll be adding to.  We know that there were plenty of you who were taking pictures, so if you have some to share, please upload them to the gallery so that everyone can see them.  Thank you!

• View or add to the gallery
  

A successful party

We had a very special dedication, lots of friends, a huge cake, lots of fun Elmo toys and decorations. Timmy seemed to have fun. He watched Pastor Mark intently during the dedication and got a huge smile on his face when everyone sang "Happy Birthday." More pictures to come.

Saturday update

The family is beginning to arrive and preparations are happening for birthday and dedication celebrations. Timmy has had a busy but good day with wagon rides around the hospital. So right now he is napping with Daddy.

Please pray for good health for all those planning on coming to the festivities tomorrow and that Timmy would not get sick before his feeding tube placement on Monday. We have been waiting for over a month for this, so please pray that it would happen as planned and that Timmy would be strong to get through it and recover quickly.

Birthday toys

Timmy has been having fun today hitting the buttons on his new learning piano that he got from his friends Jacob and Hannah and their mom. The splints on his hands are there to teach his thumbs to come out and play rather than being clenched inside his fist.

Decisions

We are scheduled to put in a feeding tube (a G-J tube) on Monday (as long as the GI people don't get busy and postpone). Then hopefully Timmy will take a few days to recover and we can go home. We have really debated on doing the reflux surgery but have decided for a variety of reasons not to do it.

Now that the tube placement is scheduled, we are planning for the birthday party and dedication to be here at the hospital on Sunday morning.

Stars

One of the ladies who frequently comes to give me breaks at the hospital pointed out to us that Timmy's birthday is the day of the year when you can see the most shooting stars.

http://www.space.com/spacewatch/080718-ns-shooting-stars.html

Quick update

The surgeons say that they think the Nissen is too risky, so we are looking at doing just the J-G tube. We are waiting to hear more details about the procedure and the timeframe. In the meantime, Timmy is smiling a bit more and giggling some. I am seeing hints of my little smiley child. He certainly loves books and music like his mama.

Please pray for financial/insurance arrangements. We are making some good progress, but it is slow and nerve-wracking. Also pray for Timmy's vision as his eyes seem to be shaking a little bit.

Evening Troubles and Morning Improvements

The evening last night was pretty rough. Timmy was pretty uncomfortable and having a hard time falling asleep. But then once he did fall asleep, he slept until morning. Then this morning his head and neck control was showing some marked improvement. He held up his head by himself for several seconds! And yesterday during his bath I heard a short but distinct giggle!  His feeding pump is up to 40 ml per hour - just 5 ml below the goal. The doctors seem agreeable to trying to get us home for the birthday celebrations, so we will see if that can happen. One day at a time. :-)

Songs of Hope

Whenever I have faced hard times in my life, music has been one of the best therapies. Usually this has meant hours spent at the piano or keyboard, but right now I don't have the luxury of the time or the instrument at the hospital. Instead I have an iPod with music that Timmy and I can listen to together. So I thought I would share my list of songs that are really speaking hope to my heart right now. Do you have other songs that you could add to the list? I would love to know what they are.

Here is my list of hope songs (in no particular order):

• "C. S. Lewis Song" by Brooke Fraser
  
• "Faithful" by Brooke Fraser
  
• "Be Still" by Storyside B
  
• "Gratitude" by Nichole Nordeman
  
• "Holy" by Nichole Nordeman
  
• "Held" by Natalie Grant (I am really addicted to this one but it makes me cry almost every time - way more than any of the others.)
• "Be Strong" by Asante
  

A mostly good night

Timmy slept until 7 this morning. So we both got some good sleep. We are slowly increasing his feedings. He generally seems better with the tube lower but is still showing signs of reflux even now. So we will continue to be watchful and see how we can best help him.

Thinking about a smile

When Mama was present today Timmy seemed better. When Mama was at home sleeping or out helping to take Oma to the airport, Timmy still had some periods when he was either uncomfortable and/or just missing her. We wish that the new tube would fix ALL of the discomfort, but at least it does seem to be a definite help. Since he seems to be more comfortable, Mama put Timmy into some normal clothes and took some pictures with Oma. She was singing him some songs and he really seemed to enjoy them. He seemed to even consider a smile. :-)

Three generations

Mama, Oma, and Timmy

Quiet

Other than cuddling with my hubby there is nothing that compares to holding my Lord's precious little one while he sleeps.

Resting with Oma

We had a somewhat tough night but Timmy is resting now with Oma. Today we will see how the new tube placement will go.