Our Brave Little Gage

On the night of Monday, February 6th, Gage started running a high fever of 103°.  I gave him some Tylenol like I always do to control a fever.  His fever came and went throughout the day on Tuesday and he developed a cough.  Since Gage has always had asthma symptoms when he gets sick, his cough sounded bad.  I gave him a lukewarm bath Tuesday night because the fever returned.  I called his pediatrician’s office and talked to a medical assistant.  I explained the situation and she said to watch him for another day.  They say they don’t need to see kids with a high fever until they have had it for 3 full days.  The Tylenol at that point was only getting it down to 101 and only for about 2 hours.  I spent Wednesday night in his bed watching him labor to breathe until I finally fell asleep at 4:30am.  The whole time I was watching him breathe I was debating taking him to the emergency room.  I knew his asthma was playing a part in his breathing,but he seemed fairly comfortable and seemed to be breathing ok, just faster than normal.  I decided to make an appointment to see the doctor the next morning.

His appointment was at 11am on Thursday morning.  The doctor that gave him the examination was Dr. Leslie Goodwin.  She is the sister of his normal pediatrician, Dr. Kevin Lash.  She checked his oxygen and it was a low 86.  They quickly gave him an oxygen mask and 2 liters of oxygen.  When that was done, there wasn’t much change in his saturation.  She told me she would let me take him directly to the emergency room at Primary Children’s, or if I didn’t feel comfortable doing that, she would call the Paramedics to transport him.  Right then I started to blame myself for not getting him checked sooner.  From now on, I am sure I’ll make an appointment for every little sniffle.  I told her I could take him and we left with an envelope from her to give the staff at Primary Children’s with “See Immediately” circled in red marker on the outside.  I drove straight to Ryan’s work right off the freeway and on our way to the hospital.  He jumped in the car, and we were on our way.

Gage was admitted and we were told he would probably be staying overnight.  His oxygen saturation numbers were not good and they dropped drastically and quickly if the nose canula was removed.  He started in the emergency department, was transferred to the intensive care, transferred back to the floor, and then transferred back to intensive care, all in a matter of 2 days.  We were told at that time that he was only transferred back to intensive care because he needed continuous albuterol to control the asthma symptoms and they could only do that in intensive care.  We were assured that we would be there a few days and be moved back to a regular room.

Of course they had to poke and prod him a million times all the while with him asking us what the doctor was going to do to him.  They drew blood, put in IVs, and ran many tests.  The first chest x-ray showed a nasty virus, one they said was the "flavor of the year": human metapneumovirus.  Since this is a respiratory virus, Gage's asthma was making it worse.  Then the really bad news: the blood culture results came back and he also had bacterial pneumonia, which was also in his blood stream.  So, Gage's little asthmatic body was trying to fight 2 respiratory illnesses at once.  We were told that the virus takes 10-14 days to run it's course and they were starting a 14 day treatment of antibiotics to treat the pneumonia.  The doctors at this point didn't seem too concerned.

The first Sunday there, I went to Sacrament Meeting at the hospital and could not stop crying.  I had so many emotions hit me all at once.  I sat in this meeting with parents that surely have children here that are sicker than Gage.  I was so thankful that his sickness was 100% curable and not a long-term illness.  I thought about the faith these parents must have to live with their kid’s suffering.  Of course, the girl that provided the musical number decided to sing “A Poor Wayfaring Man of Grief”.  What the heck?  Could she have picked a sadder song?  Don’t get me wrong, I love that hymn, it is one of my favorites.  But, it sure brings emotions right to the surface. 

Going to church at the hospital proved to be a great strength to me.  The spirit there is so strong.  I felt God's love for the children in that hospital that suffer every day.  He does not love them any less, He does not make them suffer because they deserve it, they just have different trials than the rest of us.  I felt how special they all are and how their happiness in spite of their situations can teach us.

The speaker that first week spoke about how we are all commanded to be perfect, just as Christ.  He said we can't become like someone unless we get to know them.  He stressed the importance of studying Christ's teachings and getting to know him through prayer and scripture study.  He then said we cannot become like someone unless we've been through what they've been through.  He said that everyone must go through their own personal Gethsemane.  Although I already felt at this point that I was going through a type of Gethsemane, if I had known what was going to take place in the coming weeks...  I look back on this trial as my Gethsemane...


They had to keep increasing the amount of oxygen he was receiving to keep his saturation at a safe level, but his body was really working hard.  I remember at one point, the attending Dr. came in and just watched him breathing for a few minutes.  His chest retractions were very apparent and he was breathing fast and shallow.  She looked at me and said, "I just don't know how long he can keep working this hard before he gets worn out.  This was really upsetting to me, because as a mother, I was not thinking rationally at that point and all I got out of that message was, "I wouldn't be surprised if he went into respiratory failure."  Little did I know that that would actually become reality.

He was on high-flow oxygen and continuous high dose albuterol.  Poor kid looked like a robot with those tubes coming out of his nose.  They put in the first feeding tube within a few days of him being there.  With all of his problems being respiratory, the tube had to be an NJ tube which actually goes past the stomach and into the intestines.  This decreases the chance of pulmonary aspiration, or fluid entering the lungs.  The first one went in fine, other than Gage trying to fight the whole time.  He was on sedatives, but not completely knocked out.  He knew what was going on and was basically freaking out.  I really didn't blame him, I wouldn't be too excited about someone shoving a tube down my nose and throat.  Unfortunately, within 24 hours, that tube was inadvertently pulled out while trying to get him off his bed to the bedside potty.  The second one, the poor nurse was so traumatized by the whole experience, she said if it wasn't positioned correctly, to call someone else to do it again.  Gage was yelling at her, "What are you doing? Why are you doing this to me?  I'm choking!  I can't breathe!"  They did an x-ray and the tube ended in his stomach.  Feeding tube number three...  They finally learned there lesson, gave him a stronger sedative and it went in like a charm.

Another chest x-ray confirmed what the doctors thought might happen.  He was working so hard to breathe and was on such high-flow oxygen, that it was causing small holes in his lungs and the left lung was partially collapsed.  At this point, they transferred us to a private room and Gage had a nurse sitting at the foot of his bed 24/7 for the remainder of our stay in Intensive Care.  A further look at the chest x-ray showed that the right lung was also partially collapsed and that the left lung collapse was larger than they initially thought.  Gage's oxygen saturation numbers were not great, and he was getting worn out.  This is what they call respiratory failure.  His body was not going to be able to breathe on it's own for much longer.

They made a decision that the doctors told us they really didn't like to do.  That was to intubate him.  They explained that they don't like to intubate asthmatics because they are better at regulating their breathing on their own.  But, they felt that Gage's lungs were failing, he was tired, and they hoped the ventilator would give his body the rest it needed to recover.  They were also concerned because the virus was going to take 10-14 days to clear up and we were only about halfway there.  His body needed energy to fight the pneumonia and the virus, but that energy was being expended just to breathe.

They also decided that while they had him heavily sedated for the intubation procedure, they were going to insert chest tubes on both sides to suction out air and fluid that was getting trapped in his lungs.  These tubes are inserted in between the ribs and are positioned in between the lung wall and the lung tissue.  The doctors told us this procedure is quite painful and can be painful the whole time the tubes are in.  To circumvent the pain, they started pain medications and sedatives.

The team of doctors came in to start the intubation process.  There were about 8 medical professionals in the room.  One of the hardest things for me at the hospital was whenever I thought too much about my precious son needing an actual team of doctors to keep him alive.  Not only a team of doctors, but a team of doctors in the Intensive Care Unit at one of the best pediatric hospitals in the nation.  This was a really frightening thought to me.  I prayed they would make the best decisions for him and whatever they decided would help him turn the corner and start to get better.  I was so sick of hearing the doctors and nurses say things like, "He just needs to turn the corner... He just needs to get to the top of the hill..."

They gave Gage a quick-acting sedative that would knock him out for the intubation.  They started the process immediately after.  They lowered the bed so Gage was lying flat on his back.  At this point he started screaming at everyone.  "What are you doing?  Why are you doing this to me?  What are you going to do?"  At this point, Ryan and I had to walk out of the room, we couldn't handle it anymore and could not watch our son go through anymore torture.  We walked out of the room and Gage started yelling, "Daddy!  Daddy!  Daddy!" Ryan and I held each other and sobbed.  Ryan said to me, "Can you hear him yelling for me?  I don't know if I can take this anymore."  His screaming did not stop until the sedatives finally took over.  The doors to the rooms in the Intensive Care are full glass.  We could see inside the room, but could only see the backs of white lab coats and green scrubs on various people moving quickly around Gage's bad.  They had told us before the intubation that they would tilt Gage's head back so that the doctor could see directly down Gage's throat and insert the tube there.  Then he would be on a ventilator that would basically breathe for him.  They were hoping that he could rest for two or three days while he was on the ventilator and that would be sufficient for him to be extubated and breathe on his own once again. They said that the longer they are on the ventilator, the harder it is to get them off it because their body relies on it too much.  Unfortunately, Gage was on the ventilator for eight long days.

 Barely after being intubated, I was asking him to promise me he would get better.  To my surprise, he started nodding to my request.  Shortly after Gage was intubated, the attending doctor came in and was discussing Gage's condition to me.  He proceeded to tell me, "I don't think it's heading this way, but I have to tell you there is a chance of death".  Although I appreciated his honesty, you could imagine my dismay and the torment that statement caused me.  My mind automatically went to the worst case scenario.  I thought to myself, "Why would the doctor say this unless there was a real threat to Gage's life?"  I honestly didn't know what would happen to Gage.  We never said so many prayers in our entire lives. 

They told us that a lot of kids basically sleep the entire time they are intubated.  Gage was NOT one of those kids.  At one point, one of his nurses said, "This kid has enough sedatives in him to knock out a horse and he's awake and communicating and wanting to play."  It was so heart-breaking to see him.  He had the feeding tube in one nostril, another tube in the other because he kept throwing up, this tube was to try and get stuff out of his stomach so he didn't throw it up and aspirate.  He had a tube coming out each side of his chest.  Then, worst of all, he had the intubation tube going down his throat into his lungs to breathe for him, preventing him from talking.  They finally stopped IVs and put in a central line in his neck.  The IVs were still in his hands and feet, just capped off.  He had so many machines hooked up to him.  Yet, he was awake, wanting to watch movies or play his Kindle Fire that my dad bought him to pass the time.

One day was especially hard for me.  He could not talk, so he had to point and try to communicate what he wanted to us.  I finally figured out that he wanted to color.  I got out the coloring book and box of crayons.  I asked him if he wanted me to get a crayon out for him.  He shook his head no and took the unopened box from me.  The continuous albuterol he was on is a steroid and he was on high doses.  It made him very shaky.  He was so determined to get that box of crayons open.  I had to turn away because I was so upset that such a simple task was so hard.  But, he did it.  Then it took him another long while to get a green crayon out.  I held the coloring book upright and he colored for over an hour.  For being so shaky, he did pretty well staying in the lines.  He also wanted to play Plants vs. Zombies on the Kindle Fire, but could only play for a few minutes before his hand was tired and then he'd point at me and I'd play so he could watch.

I think the thing that upset me the most was not being able to give him what he wanted.  He would communicate that he was thirsty and all I could give him was a small sponge to suck on.  He usually got really mad at that and stuck his tongue out at me.  That was quite the accomplishment considering that tube in his mouth.  He also got into the habit of flipping me if I didn't do what he wanted.  The worst was when I couldn't figure out what he wanted and he started to cry because he was so frustrated.  A few times he wanted me to hold him, that was the hardest thing, to tell him I couldn't hold him.  Also, Ryan's work had prepared a gift basket full of food for us and a stuffed animal for Gage.  It was in sight of Gage for a day or two and eventually Gage motioned at it and wanted it moved out of his sight.  It was heartbreaking to see him in such sad spirits.  He truly is a remarkable and strong boy.

While Gage was on the ventilator, none of my worries were eased.  I thought it was supposed to fix things and he would start to get better.  That's what the doctors thought too.  A CT scan showed that the pneumothoraces (collapsing of the lung) were more substantial than the x-ray showed.  X-rays only showed the collapsing on the sides of the lungs.  With a CT scan, the views are cut-aways and this showed collapsing on the sides and various other areas.  That was frustrating news.  It was starting to seem that just when we received a small glimmer of hope, they would find something else that seemed like 5 steps back.

Another x-ray showed that the chest tubes had shifted and were not positioned where the air was trapped, so the air was not coming out. He was getting one to two x-rays per day to check on the progress of the virus and also to see if the lungs were collapsing more or if the air pockets were shrinking.  The doctors directed the nurse to shift Gage's body a certain way to try and get the air to travel up towards to where the chest tubes had migrated.  This actually worked.  We immediately started to see air bubbles come out of the chest tube.  This was so great!  We thanked Heavenly Father for a small miracle.

While on the ventilator, Gage was able to stay on CPAP settings.  This means that Gage's body was doing the breathing motions, but the ventilator was providing the pressure needed to his lungs.  This was a good thing, they wanted his body to be able to do as much on it's own as possible.  Their goal was to get his PEEP (Positive End-Expiratory Pressure) down to a 5 before they felt they could extubate him.  PEEP is the amount of pressure needed to keep the alveoli open in the lungs.   When someone is sick, it's like they alveoli are small balloons that are very wet inside.  If the alveoli collapse and the wet walls are stuck to each other, there has to be a substantial amount of pressure to un-stick them and inflate them as needed to breathe.  As I mentioned before, they were wanting this to only take a couple days.  He was at a PEEP of 10, and they were not able to lower it for very long.  Gage was, understandably, anxious anytime someone walked in the door of his room.  He would point at them with a look of fear in his eyes and we knew that he wanted to know what they were going to do to him.  If it was something stressful or that he didn't want to do, his saturation would drop, heart rate would skyrocket, respirations would increase dramatically, and he would basically freak out.  This was upsetting because it always sent us back to square one and the respiratory therapist or nurse would end up bumping the PEEP back up to 10.

I remember one day, Gage had been on the ventilator for about 3 days.  The attending physician came in and watched Gage for a while.  He finally looked at me and said, "We just don't know why Gage isn't getting better."  He explained that they had the correct diagnosis, they were treating it properly, taking every measure possible for him to recuperate, but he just wasn't responding.  The next day, the chest x-ray showed a small amount of improvement.  This is when the doctor started to say to us, "Gage is finally getting better.  He's not out of the woods, but he's slowly making progress.  This is just going to take some time."  He told us this several times over the rest of our stay in Intensive Care.

Gage was awake and aware a lot of the time while on the ventilator.  We told him several times that there were a lot of people that were saying prayers for him to get better.  He knew when he had visitors and would wave to them or give them the "I Love You" sign with his hand.  This is a short video of him thanking everyone (thank you in sign language):

 The x-rays showed the viral infection in his lungs was dissipating.  The blood cultures came back as negative for the pneumonia.  Finally, things were looking hopeful.  They slowly were able to get his PEEP down over the course of about 4 days to their goal of 5.  Then they got it to 4 and his saturation levels were stable, even under stressful situations.  (Changing his diaper, suctioning the breathing tube, taking blood, giving him a bath, etc...)  The doctors finally decided to extubate him.  When the extubation was done, the attending physician looked at Gage, clapped her hands and said, "Yeah Gage!  You finally have that yucky tube out of your mouth!  Aren't you glad?"  Gage just glared at her.  Most of the staff was used to his glare, that's what he did when anyone made him uncomfortable.  She just laughed.  I took a picture of the ventilator screen because I was so happy he wasn't connected to that thing anymore!

He couldn't speak very well at first, his throat hurt and his voice was raspy.  One of my favorite things was the first time he laughed.  It was just a little chuckle, but it was the most beautiful, raspy sound in the world.  His voice and laugh stayed raspy and sore for about 1 week.

He had to stay in Intensive Care for 3 more days.  He was still on continuous albuterol and a high amount of oxygen.  They still had someone at his bedside at all times, but he was finally getting better.

I won't go into too much detail about the rest of the hospital stay, this is the longest blog post ever...  He was transferred to a regular room for 2 more days and discharged, making his total hospital stay 18 days long, 15 of those in Intensive Care.  We celebrated his 5th birthday the day before his discharge.  (A month later, he had a real birthday party!)  He enjoyed being able to eat and took advantage of their extensive kid-friendly menu!  Gage walked out of the hospital on Sunday, February 26th, 2012.

 I thank my Heavenly Father every minute of every day for sparing Gage's life.  I know he was in a hospital with kids far more sick than he was, and even a couple that passed during our stay.  I pray for those parents, that they will be comforted.  I look back on the whole ordeal and honestly am surprised that I didn't have to be admitted to a hospital.  I literally could not eat, I felt as if everything gagged me.  I had to go to the bathroom every ten minutes.  (I know, TMI, but I was amazed at what extreme stress does to your body.)  Visitors would come to see us and, in so many words, tell me I looked like crap.  :)  At least I had a good reason.  I will also forever be grateful to the wonderful medical staff at Primary Children's.  Gage was in the best possible hands.  They are all so good at what they do and really helped us through a very scary experience.  They truly saved Gage's life and they will always be in my prayers.

I also have learned a lot from having a near-death experience of a child.  I think back on the feelings I had while Gage was fighting for his life, fighting to simply breathe...  I felt as if someone was tearing me in half.  I felt helpless, lost, frustrated, and sad.  I knew losing him was a possibility, but couldn't ever wrap my head around it.  I was frustrated by people telling me everything was going to be fine.  How did they know?  If the doctor himself was telling me Gage could die, how could anyone possibly know that he would be fine?  I know the intentions were good, but they made me question my own faith and righteousness.  I am Gage's mother, why wasn't I sent that feeling of comfort and peace that others in Gage's life seemed to feel?  I prayed and prayed to know he would be alright, but that peaceful feeling never came.  I know that my dad felt the same way, (I found this out later) I could tell he was taking it hard and seeing my dad upset has always been one of the hardest things for me to handle.  If he was having a hard time, maybe it really was Gage's time to leave this life.  I never questioned God's will.  I knew I would survive whatever he chose to send my way, but I prayed that Gage would live.  I remember saying prayers and having the hardest time saying, "If it be Thy will..."  I wanted God to let me decide if Gage would live or not.  I didn't want Him to take Gage away from me.  I knew I was being selfish, I knew no matter how I felt, God would do what was best.

I remember thinking about our Heavenly Father while Gage was being intubated and was screaming for his daddy.  I remember marveling at how our Heavenly Father could sacrifice his Son for us.  I also now understand why He had to look away as his Son suffered.  Ryan and I had to look away as Gage was suffering alone.  We knew it had to be done, it was for the best.  Just as Heavenly Father knew the Atonement had to be made, it was for the best, it was necessary.  I questioned myself, "Would I ever be able to sacrifice my child for others?"  Thankfully, we are not asked that.  I know that I am too selfish to ever give up a child.  Heavenly Father loves us.  So much that he gave His Son so we might live again as He lives now.

I love my Gage.  I thank God he is still here with us.  I marvel at his strength, intelligence and precious spirit.  He makes me happy everyday.  He is such a good example to his brother, Zac.  Ryan and I know we have been blessed with very special kids.  Gage has always been unique, intelligent and sweet.  I thank my Heavenly Father he is my son.

Special thanks to all of you who helped us in any way while we were going through this struggle.  Thank you for the prayers, fasting, and faith.  God is still and always will be a God of miracles!  We love you all!