N-J tube placement

There is so much "hurry up and wait" in hospital life. There has been a lot of waiting and then at lunchtime today the nurse interviewer was here from Medi-Cal at the same time that the radiologists were ready to place Timmy's feeding tube lower, past the tummy. So we did the interview first and then went down to radiology. We are so thankful that the tube was placed successfully. Right now Timster is sleeping in my arms and getting pedialyte in his tube just to test it out before we use it for formula.

Please continue to pray for wisdom about whether Timmy needs the nissen and feeding tube surgery or whether it would be too much for him and would cause undue suffering. Hopefully this new tube placement will make it very clear. Because it is past the tummy we are hoping it will be a way to control the reflux without the surgery. But he has been having so much pain that it is hard to know whether it is harder on him to do the surgery or not to. And if we do need the surgery then we need to convince the surgeons that they should do it and they need to find time in their busy schedules as it sounds like they are always overbooked.

Answers to a few questions

Feeding tubes and surgery: Today we hope to place the nasal tube past Timmy's stomach (an NJ tube) in hopes that it will greatly reduce the reflux without the nissen surgery. At this point, we would expect to feed him for a few days after that, and if all goes well we would go home with the NJ tube. Then, depending on how Timmy's strength is holding up and a on what we decide on the nissen, we would decide whether to continue to pursue any surgery, such as a G tube or JG tube.

As for Timmy's hands, he will hold things like a small rattle or a hand-sized tube or a rolled up washcloth if you put them in his hands. Usually he doesn't voluntarily pick up things or grab things or bring his hands to his mouth. He will sometimes pull glasses off of someone's face if given a little encouragement. He will gladly hold a finger or sometimes pull hair or a shirt. Some days his hands are pretty clenched and we have some splints to put on him to help him to relax the muscles and teach him not to keep them so tight.

Reflux

Timmy has not vomited and has had just enough seizure activity that we were able to remove the EEG. However, for the past few days he has had almost constant pain from reflux. Tomorrow we hope to try again to put his feeding tube past his stomach in hopes that that will reduce his pain and get us home. For now we put him back on the Nutramigen formula since that one, though not perfect, seemed to work better than the soy formula.

Tomorrow we also have our interview for the Medi-Cal waiver. Please pray that it will go well and we will be accepted.

Another cool thing that happened today was that Timmy got to meet his great great uncle Ron. Mom and Uncle Ron and I enjoyed some time with Timmy and then a nice lunch in the hospital cafeteria. (This paranoid mother doesn't like to go too far from her little one so we stayed close by.) I am wishing now that I had gotten a picture. Sad.

It has also been great this week to have Mom (Oma) here. It has been great to have a helping hand and a chance to get some extra nights in my own bed while she stayed with Timster.

Plans are still underway for a baby dedication and birthday party the weekend before Timmy's birthday but the details are still being worked out, particularly if we are still in the hospital. Hard to predict at this point.

New hat for the EEG

We are still seeing what we can learn about Timmy's seizures by trying to see one with an EEG. For an EEG they stick probes on his head and watch the waves on a computer that also has a video camera to show what he is doing. Although it is not convenient and it looks funny, it doesn't hurt him at all. He got a new little hat to cover the probes so we thought we would take a picture.

Please pray that we would be able to help Timmy's reflux. He has been very uncomfortable the last few days.

Earthquake

Yes, we felt a small earthquake but we are all fine.

Reflections

"You are not a God who takes pleasure in evil."
- Psalm 5:4a

"Be merciful to me, Lord, for I am faint; O Lord, heal me, for my bones are in agony. My soul is in anguish. How long, O Lord, how long? Turn, O Lord, and deliver me. Save me because of your  unfailing love."
- Psalm 6:2-4

"But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body."
- Philippians 3:20-21

It's hard to feel out of control. I watch as my little boy gets weaker and even the best doctors cannot really help him. They can treat the symptoms but there is no human cure for this horrible disease. I watched as he lost the strength to suck sufficiently to nurse. So we tried bottles but there were food allergies and even then he was eating all day long in order to barely get enough. Even now with the food going directly into his stomach, the inside muscles seem to be having a hard time processing the food and keeping it down. His outside muscles have lost the ability to stand or sit or hold up his head. It appears that my smiley, giggly child has lost the ability to smile or giggle or even cry.

I cry to God to please save my son from the horrible things that are happening to him. I treasure each time that I get to hold his hand or stroke his little cheek. Each time that my loving touch can bring him a bit of comfort. Each time that I get to hold up his head or change his diaper. Each time that his beautiful blue eyes recognize his mama. Do I dare to still hope for a miracle? To hope that I might see the day when my precious little one might walk and talk and smile? Nothing is impossible with God. I know that God is good and that he can save my son, but I am afraid that for some reason that's not his will. I'm afraid to believe and be disappointed.  Mostly I am afraid of watching him suffer.

I believe. Help me, Lord, in my unbelief. Thank you for each precious moment. And thank you especially for the hope of heaven.

Monday

Timmy has been moved back to the basic unit. He continues to have trouble tolerating his feedings in that he has been extremely fussy today. We gave up on the Nutramigen formula and are trying a soy formula instead, so we don't know how long to keep trying this new formula. He has not vomited or had seizures lately so from that perspective he is doing well.

Saturday

It's so fabulously quiet in the PICU. Right now our goal is simply to increase Timmy's feedings without any seizures or vomiting. Sounds simple enough, right? I guess we'll see. Timmy is fighting some nasal congestion in addition to everything else, but at least in the PICU he can sleep after the tiring experience of having his nose suctioned out.

Daddy was here with us for a good part of the day, of course.  We took turns holding Timmy's hand and helping him get some much-needed rest.  Tonight we have a nurse who seems to understand my obsession with a good night's sleep, so that is always fabulous.  Timmy still has a lot of little sensors glued to his head, so that if he has a seizure, we can get a better idea of what is going on.  He looks pretty funny.  But he hasn't had any seizures since the afternoon that we arrived in the PICU.

Other than being congested, he has been doing pretty well today.  They were successful at putting in the central line yesterday so he should not need to be poked anymore. Yay!

Prayer:

• Thanks for the encouragement in my faith provided by other parents and nurses and doctors here.
• Thanks for quiet and energy-building sleep.
  
• That God would use this situation to strengthen us and bless others.
  
• For continued wisdom and rest and peace.
  
• Thanks for a visit with my mom, who arrives tomorrow; for safe travel and that we would be able to be a great encouragement to one another.

A relatively quiet day in the PICU

We had a quiet night. Timmy was somewhat agitated this morning, but has been calm since then. They tried yesterday to put in a PICC line, but his veins did not cooperate so they are now putting in a temporary central line that should last for this hospital visit. They are also going to do some more blood tests to see if we can identify which part of his cells has the problem. Once we have a central line, we should be able to greatly reduce how much he needs to be poked.

 
Please keep praying for wisdom and rest.

Thursday

Timmy had seizures off and on for quite a bit of the morning. He has been transferred to the pediatric intensive care unit where it is quieter and he gets his own room with more attention. On Thursday nights a friend stays with Timmy so that we can get a date and some sleep. When we left, Timmy was quietly looking around his room.

Please pray for a good rest and wisdom for all.

Another seizure

Just as things were really improving, Timmy had another seizure this morning that was about a half hour long.  :-(  It is over now and he is resting.

On the positive side

Timmy's head control seems better today than it has been in several weeks.

He puked :-(

I don't know what the doctors will say exactly, but we probably won't be going home today. This is really disappointing because we both have colds and hospital sleep deprivation and miss our beds and Daddy and Brutus.

Upcoming birthday celebrations

For those of you who are interested and available, we are planning to do a baby dedication for Timmy on Sunday, August 10.

Timmy's first birthday is the following day, August 11. Do not feel that you need to buy him something, but if you were going to do it anyway, here are a few recommendations:

• Size 12 month clothes and pajamas.  He is currently over 18.5 lbs.  I recommend shirts and pajamas that button up rather than going over the head.  Sometimes his little body is too stiff to put shirts over his head.
• Size 3 diapers.
• Nutramigen formula powder (not liquid, because we alter the powder to water ratio to increase the calories).  Nutramigen is made by Enfamil and available in most stores that sell formula.
• Things to look at and listen to, like books, music, pictures, mobiles, and things with lights and sounds.
• If you choose toys, go for things with lights and music that do not require fine motor skills or standing.  He is not likely to pick things up, but if he did, it would be with his whole hand -- nothing that would use a pinching motion or small parts.  Also, the parents REALLY appreciate OFF BUTTONS.  :-)
• Shiny, colored balloons are cheap yet very fun for him to watch.  He has an Elmo balloon now that he really likes.

Improvements

Timmy is getting to be more like his normal self today. The X-ray came back saying that his lungs are clear. His IV flushed well this morning. They plan to up his feedings to the 45 ml per hour goal. If he tolerates that well, then we go home tomorrow morning!

Tuesday night

Here is a picture of Danielle and Timmy after she was helping him get to sleep.

No word yet on the X-ray.

Our roommate did leave and so far we have the room to ourselves. We will see how long that lasts.

The IV is barely working, if at all. We have stopped the fluids because he should be getting enough hydration through the feeding tube. We are really praying that Timmy will tolerate his feedings (not puke) so that we may be able to just leave it out and go home. We are giving him just 5 ml per hour less than the goal amount so we are almost there. However, we have been this close several times before and then he puked and we had to start all over again. We tried putting the tube farther into him past the stomach but it didn't make it to the right place.

Today's recommended scripture reading is Psalm 20. I encourage you to check it out and pray it on our behalf.

New mobile

The child life specialist brought Timster a mobile for his crib and he
LOVES it.

Today Timmy's breathing sounded a bit congested so they did an X-ray to be sure that he didn't breathe in any of the vomit and get pneumonia. We are waiting for the results.

Meanwhile the doctor wants to get Timmy off of the IV before sending us home and Mama is getting impatient and not sure she wants to wait that long.

We had a close call where we almost lost the IV in his head but we have an awesome nurse today and she was able to save it.

Please pray for understanding night nurses who will let Timmy sleep at night. Last night's was awesome but it is a constant challenge, especially because it is fairly rare that we get the same nurse more than 1-2 nights.

Thank God for our new roommate's mom who has been a great encouragement to me. Please pray for another good and quiet roommate when they go home, which will probably be today.

A good night

Timmy and Mama had a great sleep last night. And I just found out that he has gained over 8 ounces since admission. Yay! His little cheeks are looking gloriously chubby. Also our new roommate's mom just really blessed my socks off last night, encouraging my faith and praying with me for us.

Even though Aunt Beth is gone now I wanted to share this cute picture from her time here.

Ups and downs

They have moved Timmy out of the "step down" unit (which was a level lower then the pediatric ICU) into the basic care unit.  So this is good progress.

On the other hand, it seems that every time we reach our goal of 45 ml per hour of formula, Timmy begins to vomit and then we turn the pump down and try again.  So it will take a while to come up with a feeding plan that works for us.

Please pray that we will be able to develop a plan that will allow us to go home.  Mama and Timmy are both struggling with some inevitable aspects of hospital life, but if we go home now we will need a good deal of support, as well as a way to keep Timster hydrated as we troubleshoot the formula issues.  We will then need to do the reflux surgery and put in the G-tube or J-tube as an outpatient procedure.  Right now we are not having success at getting on the inpatient surgery list so I would like to get us home as soon as we can reasonably do it.

Please also pray that the IV and the NG-tube (which has been specially placed to go just past his stomach to reduce the feeding issues) would stay put.

Resting with Aunt Beth

Timmy is still having reflux but he is generally feeling better and tolerating the feedings well. Because he is up to the goal feeding amount of 45 ml per hour, they have stopped the IV fluids. We are waiting now to see what we can do about the reflux and then we will see when we can go home.

This is a picture of him resting with Aunt Beth. She just left for home and we are missing her already. Now our friend Danielle is here to help this coming week.

Hello again from Aunt Beth

Today's blog post from Aunt Beth:

Hello again from Aunt Beth. In all the business of what has been going on, I wanted to share (and remember) some of the weird & funny situations encountered on my trip to visit and encourage Lara & Marshall.

The first story is literally the first story of my time out here.  I arrived here at 11:00 pm.  After we landed in CA, a woman who had been in the same row as me asked if she could use my phone to quickly call her husband, because her phone had just died.  After she called on my phone, we struck up a conversation.  She asked me what brought me to CA and, since she was also from Redlands, who I was visiting.  Once I said my sister, Lara Elfstrand, she immediately said, "Oh, Lara & Marshall!"  Long story short: they go to the same church, and she knew Timmy has been having issues.  After we got off the plane, her husband ended up calling my phone, thinking he was calling his wife.  I made Lara answer.  When he discovered he was talking to Lara, he was so confused.  "Lara?!?!  How did I call you when I called my wife back?"   It's just a small world...

Bath time: Timmy has been getting sponge baths at the hosipital.  Yesterday Lara & I bathed him, one on each side.  To be poked and pulled every which way by the doctors, and then by Mom & Aunt...it takes a lot out of a little one.  Tim's hands are usually clenched in a fist. Towards the end of the bath, Timmy told us he was done by fisting his hand, but with the middle finger nice & straight.  Now we know he really doesn't know about the middle finger, but it was a good laugh.

My welcome from Timmy: Thursday morning I started to hold Timmy so Lara could run an errand.  I didn't know at the time that he hadn't pooped in a bit... Well, he pooped, and everyone was very excited, until we found he had pooped all over the place!!!  It was on my leg, my clothes, the floor, the crib, and up & down him!!!  Well once we all got cleaned up, I was holding him again when his tummy got upset, and he then proceeded to puke all over me.  I told Timmy, "I guess I came all the way from New York so you can poop & puke on me.  I'm glad I could help you get it out."  I ended up having to go back to Lara & Marshall's house so I could clean myself & my clothes.

Lara & Marshall have a large group of people here bringing food & encouraging them in this tough time.  Thanks to all for the support.  It helps us who aren't in the same state to know that they are still getting much needed hugs & support.

Blog status

You may or may not be noticing a slight change in the blog.  We have moved it from iWeb onto Blogger, which provides a couple of advantages.  First, it should be more reliable.  Second, we can e-mail photos and posts directly to the blog from wherever we are, which is helpful when we're spending so much time at the hospital.

The address will still be the same, and I've loaded a lot of the history from the previous blog into the new one, including the comments.  The date and time of the comments couldn't be brought over, unfortunately, but we got as much of the content as we could.  I'll work on bringing over the rest of the older posts when I get the chance.

Message from Aunt Beth

If you haven’t heard already, Aunt Beth came and joined us a couple of days ago. Mama was too tired so she took charge of the communications for today. Here’s what she had to say:

Howdy all!!  Aunt Beth here.  We know that there are many of you want to know the updates of what is going on.  We are trying to get Timmy regulated in meds, hydration and rest.  Timmy is hooked up to (depending on the moment) NG-tube, monitors for heart rate and oxygen in the blood, IVs... Lara is doing a great job talking to the nurses, speech therapists, occupational therapists, doctors and visitors coming to encourage Timmy & her & Marshall. It’s a lot to keep up with. When I first arrived, we were trying to figure out if Timmy was continuing with seizures, or if the medications given were working.  After having an EEG test that shows the brain waves, they determined that he is not having seizures anymore.  There are times that Timmy arches his back and stiffens his body, but we think now that it is reflux and not seizures (as we thought that it could be).

There are a variety of daily activities we can count on.  The nurses switch from 6:30 to 7:30 in the morning & again at night.  We are out of the room for those times, so those are the times Lara can catch a shower or food -- depending on what has or hasn't happened.  The nurses I have talked with have been helping explain what they are doing and the goals of the day -- not vomiting, keeping the IVs in, watching for seizures and food intake, and paging doctors for various orders needed.  The newest possible need may be a PICC line. Basically this IV would be inserted down closer to the heart, and the need to keep poking Timmy would be lessened. The order for the PICC line was put in too late in the day for it to be done today, but we are hoping for tomorrow.

Update from Marshall on July 21:  I've updated the post to clarify some things.  In particular, it's an NG-tube, not a G-tube as was previously posted.  Timmy has not had any surgery yet.

Resting

Timmy had another long seizure earlier this evening. Now he's resting
with Mommy.

Quick Tuesday update

Timmy began experiencing seizures again last night, so they’re increasing medication for those. He also continues to have muscle spasms from constipation and reflux.

On the bright side, he hasn’t been vomiting lately, we have a quiet room, and we’ve been very happy with the nurses. The room has a DVD player, so tonight we’re going to watch one of our movies as we keep the Timster company.

Monday morning

Timmy is doing much better in the step-down room. There's far less activity and noise than the room he was in last week, and he's having an easier time sleeping. Last night the hospital re-arranged the kids in the unit so that Timmy's previous roommate -- who was still rather noisy -- was moved to another room with a noisy kid, and Timmy has a new roommate who is expected to be more quiet. So that's all good.

The seizures seem to be under control at the moment; he hasn't had any since Saturday morning. He did have some pretty severe vomiting yesterday morning, however, so they stopped his tube feedings for a while, just keeping him on the IV. He's now taking some small amounts again and is handling them well. The doctors think that the vomiting may be partly caused by constipation, so they're trying to treat that. It was also discovered that Timmy has a urinary tract infection, so he's been given some antibiotics to treat that as well.

One thing we're very happy about is that the neurologist who's been working with Timmy is back from vacation and will be the attending physician starting today. While things have been better this weekend under the neurology group than they were last week under the GI group, it helps to have someone who's specifically familiar with Timmy.

Once again, sorry about the lack of the comment feature on the blog. So far we haven't gotten any word on when it will be fixed. If it doesn't get resolved soon, we may switch to a different provider for our blog; if this happens, the site's address will still be the same, it's just that it will look a bit different.

Appreciation

I continue to be amazed at just how blessed we are with friends. Friends who bring us dinner in the E.R. Friends who work at the hospital and take time out to visit and pray for us. Friends who have gone through similar things and can relate and advise. We are so wonderfully overwhelmed by support from people.

To everyone who has visited, to everyone who has fed us, to everyone who has pushed to get Timmy better care, to everyone who has e-mailed, to everyone who has commented, to everyone who has called, to everyone who has prayed: Thank you. Thank you so very much.

Back to the hospital

Timmy was discharged yesterday, with some medication to take to help with reflux. I came home after work, since Lara was going to be leaving the hospital right around the time I was leaving the office. Well, leaving the hospital took longer than Lara expected, and she didn't actually make it out until around 8 PM.

Just over half-way home, Lara heard Timmy being unusually fussy in the backseat, and then crying and moving around in a way that indicated to her that something was wrong. She got off the highway and pulled over by the University of Redlands to check on him. Timmy had gone rigid, and he felt hot and sweaty. Lara tried to get his attention, but his eyes kept moving around, and he was clearly not responding to her. A young lady walking her dog nearby heard Lara crying Timmy's name, and offered to call 9-1-1. The paramedics came, Lara followed them to the hospital, and I drove over to meet them in the Emergency Room.

We (and some friends) had suspected that Timmy might be having seizures, especially over the course of the past week. The trouble is that an infant with reflux will often tense up in the same way due to the discomfort, and the seizure medications are the kind that shouldn't be given if the child doesn't need them. It's clear now, though, that it's something we're going to have to deal with.

While in the E.R., Timmy had another seizure, this time lasting over twenty minutes. But in this case, he was surrounded by doctors and nurses the entire time, witnessing the event and providing increasing doses of medication to get it to stop. Eventually it did, his heart rate and breathing returned to normal, and he was able to sleep for a while.

Sometime around 11 PM (I don't remember exactly) we were transferred back upstairs, this time into a step-down unit. This is an area that is a "step down" from intensive care, but still has an increased level of monitoring for patients. The attention from the nurses and the peace and quiet in this unit are a huge improvement over where we were previously this week. We're actually being seen by neurologists, who know what's going on with Timmy. He's now getting the medication he needs both for the reflux and to help prevent further seizures.

So that’s the latest. We’re still in the hospital, and we don’t yet have an idea of how long it will be. Today they’re simply monitoring him and keeping him on the IV; we’ll just have to wait and see how he does.

Sorry about the downtime

Just wanted to apologize for the weirdness with the blog and the photo gallery (e.g. disappearing, redirecting to product pages, lack of commenting) over the past couple of days. Apple is changing their old dot-Mac service to “MobileMe” with the launch of the new iPhone, and it’s still in transition.

We seem to be able to publish to the blog now, but comments aren’t working yet. Hopefully this will get resolved over the next few days.

Timmy is still in the hospital... more on that in a bit...

Friday morning update

Well, the visit with the doctor yesterday was pretty brief, but I’ll see if I can summarize what I got out of it.

Despite spending most of his time with the pH probe in an upright position and fasting for the upper GI test (not ideal conditions for finding reflux), he still tested positive for reflux. So they’re going to put him on a couple of medications for it. They also put the NG tube in last night and put him on a feeding pump while we see what he can tolerate as far as quantity goes. (A friend from church, who both knows Timmy and is also a retired nurse and nurse educator, watched Timmy last night so we could both sleep at home. We don’t know yet how that went.) Then the wait for the G-tube surgery is so long that they are sending us home in the meantime. So then we’ll come back for it as an outpatient procedure.

Prayer requests:

• That if the Nissen Fundoplication surgery is not a good idea for Timmy, God would change our minds about it.
• That if the Nissen surgery is just what Timmy needs, that the schedule would open up for it to happen ASAP.
• That the NG tube would stay put! Replacing it makes Timmy hyperventilate and scream and get all stiff and fussy, which really wears him out. Once it’s in and he’s had a rest, it’s OK. But the process of putting it in his nose makes him extremely anxious. The nurses commented that his reaction was one of the worst they’ve seen. This makes me not want to be the one who has to put it back in if he takes it out. And so far, while he is not very coordinated with other things, he is quite coordinated at removing the tube from his nose.
• That we would not leave the hospital unless we are sure that Timmy is tolerating the formula feedings well.
• Continued thanks for our families and friends who are doing such a great job of supporting us. 
• That all of the paperwork for secondary insurance applications would go through quickly to cover things like the feeding equipment and home health nurses, as well as the hospital stays and the surgery coming up.

OK. I’m off to feed Brutus and get back to the hospital, hopefully before the shift change.

Waiting for results

Timmy is done with the first two tests now, both of which were checking for acid reflux. He had a 24-hour pH “probe” (like an NG tube, but with a monitor to detect acid levels) from yesterday afternoon to today, and he had an Upper GI test this afternoon, where he swallowed a substance that lets them see his esophagus and stomach on an X-ray. He did well through the tests. Tomorrow we’ll be talking with doctors to see what the results are and what will be the next steps to take.

One issue that Timmy’s been having is that his IV (which is being used for hydration) has not been staying in, and it’s hard to get it in to begin with. Each time he loses it, it can take several tries to get it back in. So please be praying that the IV stays put.

Shower Break

Lara here. Just stopping home for a quick shower. We’ve had a fabulous number of visitors today to give me some breaks so that I can do paperwork and other un-fun but necessary things. We’ve met lots of different doctors who asked lots of questions and got enough history to start to figure out what tests need to be done. Right now (4 PM) Timmy has a pH probe that is testing the acidity of 2 spots in his esophagus. That probe goes down his nose just like the NG tube did. He didn’t like it going down, but now that it’s down he’s doing just fine. I just got word that the X-Ray came back showing that the tube is in the right spot, so once he wakes up from his nap we will give him some apple juice and start to feed him “normally” so that we can see whether that produces reflux or not and how much.

That probe will be monitoring him until sometime early tomorrow afternoon, and we should have the results quickly after that. We also are hoping to do the upper GI test tomorrow to check his anatomy to make sure there are no surprises during the upcoming surgery. And somewhere in there I think there may be a swallowing test. Once we get the test results back, we will decide what type of surgery he needs and then we’ll see when we can get that scheduled.

In general Timmy is weaker these days than he was a month or so ago, but I notice a significant improvement when he is well fed and well hydrated and not having reflux issues. So already right now he is more smiley and doing quite a bit better than he was before we went in to the hospital. I am really looking forward to seeing what kind of a plan we can put together for getting the reflux and the feeding issues taken care of so that we can go home and play, play, play!

In the hospital

So it looks like I will be making most of the blog posts for the rest of this week, probably in the evenings when I get home, in between hospital visits.

Timmy was admitted to the hospital this afternoon as planned, and he is now hooked up to an IV that’s getting him the fluids that he needs. Tomorrow they’ll start the reflux tests, where he is fed “normally” and they measure the acid levels outside the stomach. I’m not sure how soon there will be results from that.

Lara and I were able to go out for dinner tonight, thanks to Timmy being watched at the hospital by both staff and friends. We visited Claim Jumper for our favorite Glazed Walnut & Asian Pear Salad, followed by the Braised Short Ribs, and some berry pie for dessert (one of the few things on the dessert menu that didn’t contain dairy). It was wonderful to enjoy some good food and have some time just to talk.

Unrelated, but while I’m thinking about it...iTunes is offering Brooke Fraser’s Albertine album as an “Editor’s Choice” special for $6. I downloaded it today on something of a whim because the samples sounded decent and it had a track with the intriguing name of C.S. Lewis Song. And wow, am I glad I did. Simply beautiful music, from the more radio-friendly Shadowfeet to the intimate voice-and-guitar of The Thief. Highly recommended, especially for the price.

That’s it for today...I’ll post more as things progress.

Today’s update

It is now almost 2 PM. I have spent all morning on the phone trying to make arrangements to get Timmy admitted and checking to be sure that our Idaho insurance will still cover us. It looks like the insurance is OK for now, but I still don’t have confirmation that the hospital has a bed for him. However, Timmy has not had enough to eat today, and although I could put the NG tube back in, I feel that it is time for outside help. So I am packing things up and shortly we will be headed to the hospital.

If they don’t have a bed for him when we get there, then I will check us into the ER to get Timmy hydrated and see if that will push the process forward. I know that the admissions department has been faxed the orders from the doctor, so hopefully that will help to shorten the wait. Here we go!

2:45 PM Update from Marshall: As Lara was on her way to the ER, the hospital called and said they had a bed ready. So we’re going through the normal channels after all.

Getting ready for the hospital

I find it very odd to say that I am looking forward to going to the hospital tomorrow. Why am I looking forward to it?

For one thing, I am looking forward to Timmy’s time and energy being used for playing and growing rather than for eating. The G Tube should help with that.

Secondly, Timmy has still been having problems eating which I think are tied to reflux. That will be something they’ll be testing for. If he tests positive for reflux, they will probably suggest that we do a nissen fundoplication surgery to correct it. I hope and assume that this would happen at the same time as the insertion of the G Tube.

Please pray that all the pieces would fall into place for Timmy to be admitted tomorrow, preferably to the unit where our friend works. Please pray for Timmy’s (and for my and Marshall’s) energy level and stress level throughout the whole process, and that he would have a quick recovery. Please pray that we would have wisdom about what procedures would make Timmy the most comfortable. Please pray for steady hands and clear minds for the surgeons, doctors, and technicians. And please pray for us as we go through the emotional, physical, and financial stresses that come with having a kid in the hospital.

Birthday surprise

On Thursday night, 8 of our friends were able to meet us at BJ’s Restaurant to surprise Marshall for his birthday (which was Wednesday). A fun time was had by all.

Happy Birthday!!!

Happy birthday to you. Happy birthday to you. Happy birthday, dear Marshall. Happy birthday to you!

I love you so very much.

Lara

Sending flowers??

I also just found this site where you can order flowers or gifts and 12% of the proceeds support the Mitochondrial Disease Action Committee. So they’re not the cheapest flowers ever, but some of it goes to help kids like Timmy.

G-tube book

I was looking around the Carepages for Derek Swanson and found a link to this children’s book about G tubes (PDF).  This is the kind of a feeding tube that Timmy’s going to have. I thought this was pretty helpful, even for me.

Feeding update

If all goes as currently planned, Timmy will be admitted to the hospital next week (probably all week) for GI tests and surgery(s?) to put in the permanent feeding tube. First they will test for reflux. If he does have reflux, they will have to do surgery to fix it before putting in the feeding tube. Otherwise it should just be the one surgery.

Reflections

As Timmy and I were playing yesterday, Sara Groves’ song called “Kingdom Comes” came on. Just thought I’d share it.

Click here for the lyrics.

If you have iTunes, click here to find the song on the iTunes store.