Remembering Noah

This video was shown during the visitation at the memorial service for Noah.  It makes me cry every time I watch it.  Special thanks to Buddy Overstreet for putting it together for us.

Funeral announcement

Noah's obituary was published in the Tuscaloosa News on Monday.  Click here if you would like to read it.

364 days

Our sweet little Noah passed away yesterday.
We were blessed and thankful to have him in our lives for 364 days.
We are rejoicing because we know that he is now completely healed.
We will miss him every day for the rest of our lives.


Noah's memorial service will be held at Capstone Church at 10am on Wednesday, August 20th, with visitation at 9:30am. Capstone Church is at 1907 University Boulevard in Tuscaloosa.

In lieu of flowers, we would appreciate donations to be made to The Rise School in Noah's name. Noah would have started school at Rise on August 13th and the staff members there touched our lives as they provided therapy to Noah throughout the summer. The address for donations is:
RISE SCHOOL
Box 870305
Tuscaloosa, AL 35487

Breaking the silence

At long last, our computers have been returned to us.  

Even in the absence of my blog posts, we have been overwhelmed and awed by the love and support that have been poured out as we travel this journey with Noah.

Noah remains in the the pediatric intensive care unit on a ventilator.  His MRI on Friday revealed that the damage from the leukodystrophy has extended into his brain stem... an area of the brain that controls involuntary functions like respiration.  This was not entirely unexpected, but the speed with which the disease has spread surprised even our pediatric neurologist, who has been seeing Noah since March.

Noah, while stable, is still a very sick little boy.  

We continue to covet your prayers for wisdom and peace and comfort.

Two weeks

Two weeks ago today we took Noah to the emergency room. I don't think Josh or I expected that he would still be in the hospital today.

Our conversation with the doctors yesterday was hard but informative. They gave us two options of treatment for Noah... both difficult, both requiring a leap of faith.

For now, we have decided to let our little guy rest and recover from all that has happened over the last 14 days. He is finally receiving food again via his g-tube (really only the second time he is being fed in these two weeks) and the ventilator is helping him breathe (although he is showing evidence that he can do it on his own when he wants to). Our plan is to give him several days to work back to full strength and then reassess. We also are requesting another MRI... hoping to gain additional information about what is going on in Noah's brain that might be causing his problems with breathing (it is very easy for the doctor's to blame everything on Noah's leukodystrophy but we would like a little more data).

Please pray that we would have wisdom, perseverance, patience, and strength. Please pray that Noah, more than anything else, would prove to the doctors that he is willing to breathe on his own without the ventilator.

PS... We are without any laptops at the moment as they are being repaired at the Apple Store. And, unfortunately, I can't seem to post to the blog from Josh's phone. So please be patient with my updates.

Wednesday afternoon update

Noah's struggle to breathe on his own continued this afternoon and the decision was made to put him back on the ventilator.

He is stable, but still a little sleepy from the sedation they gave him for the intubation.

We are meeting with the doctors at 11:15am tomorrow morning to discuss our next step.

Thank you for all your prayers.

Please pray

Noah's carbon dioxide levels were extremely elevated when we arrived at the hospital this morning.  He was lethargic and wouldn't open his eyes.

I am so angry all I can do is cry.

We specifically asked the doctors yesterday if they were going to keep track of his CO2 and we were told not to worry about his gas levels.  When they finally measured it this morning after I raised the alarm because of his odd behavior, they were higher then they had been during his whole hospital stay. 

He is still on the BiPAP machine but if his numbers don't improve they will put him back on the ventilator.

Noah is simply not doing a good job exhaling and getting rid of CO2.  His brain may be responsible but no one can really seem to tell us.  They are finally going to start feeding him again... which hopefully will give him some additional energy to work on breathing a little bit more on his own. 

This was a very discouraging morning.  

A better day

Today was a better day.

Thank you for the flood of encouragement and love after my last post... it helped restore a little strength and hope in my spirit after a really hard and long day.

Our computer issues continue which leads to my infrequent posts... the battery on our laptop will not charge using our power adaptor so we have to use it sparingly throughout the day.  Josh snagged an appointment at the Apple Store on Thursday to see if they can help us solve the problem.

But on to what you really want to know...

Little Noah Man came off the ventilator today!!!  Hooray!

After a good chunk of sleep last night, he was in a much better mood today.  We were able to distract him from the breathing tube by playing with him and that allowed his respiratory rate to stay in a much more normal range.  They weaned him from a little of the support the ventilator was giving him and then took his breathing tube out around 5pm this afternoon.  After a little coughing and sputtering, he took off breathing like a champ!  

They currently have him on the BiPAP machine to try to support his respiratory system a little ... he looks like a cross between Darth Vader and Snuffaluffagus when it is on.  He has a black skull cap that covers most of his head down to his neck and then a blue mask over his nose that connects to a long tube that goes over his head.  Pretty funny looking.  I'll try to snap a picture of him at some point as my description doesn't quite do it justice.

He was much more tolerant of the BiPAP machine this time around and seemed to be in good spirits.  He has been playing with his toys and interacting with the doctors and nurses.  He is still having a hard time resting as his current bed in the ICU is in a high traffic area, but he has taken a couple of catnaps over the course of the day.

A couple of specific prayer requests for the next few days:

-We want to have a pow-wow between the doctors we work with in the ICU and the pulmonary doctors who will take care of Noah when they move us back to the 5th floor... there has been a communication gap between these two teams that needs to be filled before Josh and I will feel comfortable with the plan for Noah's care.

-Noah will begin receiving formula through his g-tube tomorrow.  Please pray that he digests this food easily and that there are no respiratory side effects, specifically with any feeds that take place while he is on the BiPAP machine.

-We need Noah's carbon dioxide levels to stay in the normal range.  

-We need answers as to what is causing Noah's respiratory difficulties... no one seems to be able to tell us this at this point... and a course of treatment that will not dramatically affect his quality of life (freedom of movement, ability to go to Rise, etc).  

Thank you, thank you, thank you, for joining us in praying for our sweet little guy.  He steals my heart every time I look at him and I just want to scoop him up and take him home. 

Stairs

Josh and I both agreed that the best thing that happened today was that we found the stairs.  

The elevators at Children's hospital are soooo slow sometimes and then become very crowded with all the people who have been waiting.  We have been looking for stairs since last week and finally found them today... 

But you know it has been a rough day when this discovery makes the top of the highlights list.  

The rough parts of the day included:

-Noah staying on the ventilator today... and hating every minute of it.

-Noah being so agitated by the breathing tube that he could not fall asleep even though he was completely exhausted (they finally gave him some medicine around 6:30pm tonight that allowed him to rest)

-Me breaking our back up laptop... which is why I haven't updated the blog until now.  It is the second laptop I have managed to wreak havoc on in the last month.

-Coming home to Tuscaloosa for the second time without Noah

I am very glad that day 11 in the hospital has come to an end.  I only hope day 12 is better.  

PICU, part 3

Noah is back in the PICU.

He had a really rough morning that ended with a slight obstruction in his airway and high carbon dioxide levels.  They have put him back on a ventilator and he is breathing much more comfortably now.  His numbers are back to normal but the trauma of the morning has resulted in a lot of fluid build up in his lungs.  He is receiving treatment for this fluid every 4 hours and we are hopeful that much of it will be cleared up by tomorrow.

We have a lot of questions and very few answers.  

One line of thinking is that Noah's digestive issues are continuing to plague him.  We started feeding him via g-tube on Friday night.  We found a middle ground with the doctors regarding his feeding regimen... not nearly the increase in volume that they were wanting but still a fairly ambitious plan that tested his stomach capacity.  This was potentially our undoing.  In hindsight, it seems that Noah started getting fussier yesterday after we hit the 3 ounce mark in our feedings... and then we used a continuous drip over night.  All of that formula may have encouraged some reflux to sneak up past the fundoplication and add to the secretions that have been his nemeses from the beginning.  These secretions make breathing more difficult for Noah and reduce his ability to vent carbon dioxide effectively.

A second line of thinking is that Noah's leukodystrophy is causing him to lose control of the muscles that help him keep his airway open.  This is a much more discouraging possibility.  It is not uncommon for kids with neuro-muscular disorders to struggle with breathing and many end up with tracheostomies to control their airways.  Please pray fervently against this.  We obviously do whatever is necessary for Noah but do not feel ready to take this step anytime soon.  

We are exhausted but relieved but so thankful that Noah is breathing easier.  He is likely to be in the ICU for the next few days and I am making no predictions about when we might be going home.  

“You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be.” 

Stockdale Paradox as quoted in "Good to Great"

The long road home

Just when it started to look like we were in the home stretch of this hospital stay, we things have taken a turn.  Noah's carbon dioxide levels were escalated this morning leading to some additional (much to Noah's dismay) hours on the BiPAP machine.  We are frustrated and discouraged... and unsure what direction this might take us.  Please pray.

Picking fights with doctors

Today is the 1 week mark of our hospital stay with Noah.  Hard to believe.  It looks like we are stuck here until Monday at least, barring any major changes.  Although I think some of the doctors wish they could kick us out earlier-more on that later!  

Noah has had a really good day.  He has been taken off the BiPAP machine except for potentially at night and has only minimal supplemental oxygen going in through his nose.  His numbers have looked really strong... even his carbon dioxide levels have dropped into the upper part of the normal range, a first since we arrived last week.

The doctors want to do a sleep study because they believe Noah isn't venting carbon dioxide effectively.  The study would help us know if he needs any kind of respiratory support while he sleeps at night.  Unfortunately, no sleep studies are performed on Friday or Saturday nights... so the earliest we could have one done is Sunday night, and that isn't even a definite.  Josh and I are hoping that Noah's CO2 numbers continue to remain the normal range so we can be discharged and schedule the sleep study as an outpatient procedure for a later date.  Not sure if the doctors will be on board with this plan...

He seems to be recovering from his surgery with amazing speed... the small incisions from the procedure don't seem to bother him at all.   We have just begun to feed him via his g-tube again... which is the source of fiery debate between us and the doctors.  I won't bore you with the specifics, but suffice it to say that the "orders" for Noah's nutrition are ridiculously aggressive.  Prior to being in the hospital, we were feeding Noah three ounces four times a day.  The goal given to us this morning was to make it to five ounces five times a day by tomorrow... which is simply not realistic at this point.  The nutritionists are making calculations without knowing Noah's whole story or even talking to us... not to mention the fact that the surgeon has told us time and time again that the biggest mistake made after fundoplications is OVERFEEDING!

We have already gone two rounds with the residents on the respiratory team (who don't quite know what to do with parents like us) and made a sweet dietician very uncomfortable.  The bottom line is that Noah's nutritional needs are VERY different than that of a typical 11 month old and his stomach behaves VERY differently as well.  We know that better than anyone in this whole hospital.  We are willing to slowly increase volumes and work on his caloric intake but we want to do so at a conservative pace.  I'll keep you posted on whether or not the doctors agree with our perspective!

Noah & Blue

Noah's new friends

Noah has made lots of new friends since he has been in the hospital! Many of the nurses he has had over the course of the week come by to check on him from time to time even when they are assigned other places!

I snapped pictures of his cutest new friends...

This is Simon the Loving Lion... he is the mascot of Children's Hospital.  One of the chaplains brought him by this morning and have him to Noah.  A poem accompanies Simon that goes like this... "When you cry, I am here for you to hold.  When you're afraid, you'll never be alone.  We can be together each and every day because my love is here always."

This is a giant ballon of Blue, the dog from Blue's Clues.  Noah has a small version of this balloon at home so I couldn't resist this one when I saw it in the gift store.  He loves it... earlier when he was getting agitated and his heart rate was elevated, I brought it down close to him and he reached out both of his hands to touch it.   His heart rate decreased almost immediately!

 

Ventilator drama

Noah's surgery went very well yesterday.  The fundoplication basically creates a one-way valve between his esophagus and his stomach which will hopefully prevent any reflux and vomiting from happening.

The biggest concern after the surgery is Noah's breathing.  The doctors prepared us yesterday for the possibility that they would not take Noah of the ventilator after surgery and send him back up the the PICU.  We were fine with this scenario because it would give his little body a chance to heal before it had to concentrate on breathing again.  And we love the nurses in the PICU.  =)

We checked in on him after surgery and he was still pretty out of it from the anesthesia.  We left to grab some dinner and to check into the hotel, anticipating that he would sleep most of the time we were gone.  Turns out that Noah had other things in mind... he woke up after we left and started breathing on top of the ventilator, which means he was breathing better on his own.  He hates having the breathing tube down his throat, so I think he was saying, "I'm ready!  I'm ready!"  The doctors started weaning him off the ventilator and tried to extubate him.  At which point Noah said, "Just kidding!  I'm not ready!"  He had a lot of difficulty getting deep enough breaths to maintain the oxygen levels he needed ... so back on to the ventilator he went.  

Because of all that drama, the doctors were less than optimistic this morning about his ability to come off the ventilator today... and started talking about all sorts of unpleasantness if he couldn't breathe on his own that I won't go into.  Fortunately, the second attempt at his extubation went smoothly and he is breathing like a champ.  They have him on a BiPAP machine (very similar to what people use who have severe sleep apnea) to make the transition off the ventilator a little easier.  I am extremely relieved that he is off the ventilator...please pray that he continues to breathe well on his own and keep his airway clear. 

They are not going to feed him through his g-tube until tomorrow at the earliest... giving him the chance to focus on breathing today before adding a new challenge to the mix.  

The Lauer Tour of Birmingham Hotels

With Noah in the PICU again, we have returned to our tour of Birmingham hotels.  

(Thanks to everyone who suggested the Ronald McDonald House... we actually used the Ronald McDonald Family Room back in St. Louis when Noah had his first hospital stay and it was fabulous.  They have a brand new RMH here in Birmingham, but it has been completely full since we arrived.  The other option given to us by the social workers is a coupon for a discount at the "Medical Center Inn".  I looked up this "Inn" online and the first review I found was "clean but creepy" at which point I looked at Josh and said "I don't think so.")

Our first two nights (Fri & Sat) we needed as little stress as possible and wanted to be close... we stayed at the DoubleTree downtown.  Very nice hotel with big, soft towels.  The TV was not so great and the internet cost $10.  (I am firmly of the belief that free internet is one of my inalienable rights.)

Our third night (Sun) things were calming down so we moved a little farther away from the hospital and stayed at a Drury Inn.  Free internet and breakfast were desirable perks but the bed was definitely not as comfortable as the previous two evenings.  Lousy towels.  

The came our two night stay (Mon & Tues) in Noah's hospital room in 5 tower.  See the chair-bed picture... it tells the whole story.  I won't even describe the bathroom.

After Noah's surgery yesterday, he headed back to the PICU for the night (more to follow on that later) so we once again sought out a room to sleep in.  Pavlina hooked us up with the Birmingham Southern University rate at a Comfort Inn (close to the Drury from Sun. night).  Better breakfast than the Drury Inn... partly because the woman who managed the breakfast area treated it like her own kitchen and welcomed us warmly into it.  Free internet again, although I fell asleep to quickly to use it to update the blog.  

It looks like Noah will be in the ICU again tonight... and we have decided it probably is a good night to head back to T-Town to Chez Lauer and visit our tempurpedic mattress.  Clothing supplies are dwindling again and a load of fresh laundry will carry us through the weekend.

Little Noah Man

Here is our sweet little guy hanging out during his last day in the PICU... snuggling with his favorite puppy and with his pacifier firmly in place on his right thumb.

Noah was fascinated by this Gerber daisy that was in my beautiful birthday bouquet from Judy and Pav.  I had to be careful or he would pull all the petals off!

Here is a picture of our deluxe accommodations in 5 Tower at the hospital!  Our two beds are next to Noah's crib... they fold back into chairs by day.  Rumor has it that we can request some additional padding (egg crates or camp mattresses) to put on top of these chairs at night... we will definitely be investigating that for tonight!

Green light

The pulmonologists and GI docs have given Noah the green light for surgery today!

I am a little nervous about this decision because of Noah's CO2 levels last night but the doctors felt like we could move forward as long as Noah's oxygen levels stay strong, which they have.

We are on the surgery schedule for around 2pm, but it could be earlier or later depending on how the rest of the day goes for the surgery staff.  If you are interested in praying for the surgeon by name, the head surgeon is Dr. Keith Georgeson.

You have got to respect the long hours that doctors keep... our GI doc, Dr. Cavender, came by to talk to us after 7pm last night and the surgery fellow came by before 7am this morning.  Crazy.

In search of a moment of peace

A room in a pediatric hospital is a busy, busy place.  

We've had no fewer than 17 medical people (doctors, nurses, nursing students, residents, fellows, nutritionists, therapists, etc.) come through Noah's room today.  While all are welcome (except maybe the nursing student who just stood and stared at me like she was waiting for me to do a dance), it makes for somewhat of a parade and sometimes a traffic jam.  These visits also included two respiratory therapy sessions at midnight and 4 am that Noah slept through... which cannot be said for me and Josh.

Noah news (Day 5 @ Children's):

-Noah had a pretty brutal gastritis attack this morning.  Twice he spit up some nastiness that was definitely not food (he is being fed with formula going directly into his small intestine) and that slightly concerned us.  As the hours passed, he became increasingly agitated to the point that his heart rate skyrocketed and his face turned bright red.  The neurology fellow who was in the room at the time got a wee-bit freaked out by this turn of events and began to frantically search for a cause.  Our pediatric surgeon happened to wander in the room around this time and casually said that we may want to consider venting his g-tube then wandered back out again.  Sure enough, after hooking up an empty syringe to his g-tube and the subsequent flow of additional nastiness, Noah settled down and looked at us as if to say, "What took you so long?" Our GI doc said he thinks the nastiness was a result of a irritated stomach and esophageal lining... not a huge deal, just uncomfortable for little Noah man.  

-We get to add a new specialist the myriad of doctors who are involved in Noah's care.  Dr. Clancy, a pulmonologist or lung doctor, introduced himself today and talked with us a little about the options we have in our attempts to protect Noah's airway.  He is currently receiving respiratory therapy, which consists of a therapist coming in every four hours to essential pound on Noah's chest to loosen up any junk that is in there as well as using a machine that assists him in coughing.  These are both therapies that we can continue at home if necessary.  Our respiratory concerns right now are pretty simple.  Noah's oxygen levels drop significantly when he is not supplemented with extra oxygen... he should be at a 100 all the time but he tends to drop into the upper 80s when he breathes completely on his own.  Also, there is some concern that Noah is not clearing the carbon dioxide out of his lungs effectively.  Please pray that his gas levels are stable, otherwise surgery might be postponed until next week!

-Noah is tentatively on the surgery schedule for tomorrow afternoon for his fundoplication.  We are waiting to get clearance from the respiratory docs based on Noah's carbon dioxide levels and have our fingers crossed that no other emergency surgeries bump Noah out of line.  He will have to be on the ventilator and be under anesthesia for the surgery... neither of which we are looking forward to.  Please pray that he is able to breathe on his own after surgery... otherwise he will end up back in the PICU for recovery and remain on the ventilator.  

-Our nurses have been awesome.  Debbie, our current nurse, may actually try to take Noah home with her.

-Today's simple pleasure:  Crushed ice.  Is there anything better?  And we have all the crushed ice we could want a few steps away at the nurses' station.  

Movin' Up

We are officially out of the pediatric intensive care unit!  

Early this afternoon, Noah was moved into a private room in the pulmonary unit.  We are slowly settling into our new digs and enjoying the side benefits of being in a regular room.... we can now use our cell phones without restriction and bring food into the room.  There are also two chairs that fold out into beds for us to sleep on, so it looks like we will be having a slumber party with Noah for the rest of the week.  Not as comfortable as a hotel, but definitely cheaper!

(If anyone needs to know, we are in Room 504.) 

Here is the rest of what we know:

-Noah is mostly likely going to have a fundoplication on Wednesday.  His g-tube study today revealed what we already expected, which is that he is refluxing like crazy and compromising his airway.  A fundoplication seems like the best bet to fix this problem and might make feeding Noah simpler than it has ever been.  We were hoping to see Noah's GI doctor this afternoon, but he never showed up... hopefully we will have a chance to discuss the fundo with him tomorrow.

-Noah is receiving respiratory therapy several times a day.  This consists of a therapist taking a machine that vibrates and placing it on Noah's chest in an attempt to shake up any congestion in his lungs.  They also are using a machine called "Cough Assist" where they use positive and negative pressure in his lungs to help him release and cough up some of the secretions that are clogging his airway.

-The doctors don't want Noah to have anything in his stomach until after the fundoplication, so Noah has a TP tube that with deliver food into his small intestine for the next few days before his surgery.  I am anxious for him to have some nutrition as he has only be getting fluids since Friday morning.

Generally speaking, Noah is doing well.  He gets agitated when he is poked and prodded too much (understandably) and I think he is really hungry, but otherwise he is in pretty good spirits and loving his toys. 

Definitely not the way I expected to spend by birthday, but I am happy enough to have both of my boys by my side regardless of where we might be!  

Today's simple pleasure:  With the help of some friends from Bama who are coming to hang with Noah, we are going to sneak out for a little while tonight for a birthday dinner.