Ammon Update...

Back among old friends.  Ammon has not been feeling well for the past week and half, with some stomach issues and other items.  The chemo stills makes him feel not the greatest.  On Monday and Tuesday he actually started to look and feel better.  He wasn’t crying hardly at all, we did need to hold him all day, and he actually slept well on both nights, instead of waking and crying every 20 or 30 minutes.  We had turned the corner!  It’s important to remember that an extremely good night for Ammon is only waking up three or four times, which means that we are only up three or four times to change a diaper, refill his food pump, rotate him around, or give him a sleepy hug.  We always hook Ammon up to his oxygen saturation and heart rate monitor at night.  This monitor allows us to sleep.  It tells us if Ammon stops breathing or if we need to turn his oxygen up, it tells us if his heart is beating too low or too high.  It is the watchful guard throughout the sometimes long night. 

Come Wednesday, he woke up in the late morning breathing very hard and with a frequent cough.  Coughing is difficult for Ammon, he really has to put his whole body into it to get a good clearing cough.  By early afternoon the coughing and breathing had become more extreme and Summer was concerned.  A call was made to the cancer clinic at Primary’s and they said to bring Ammon to the ER immediately.  Upon arriving at the ER, Ammon deteriorated quickly from a respiratory perspective.  His secretions had become more excessive and he wasn’t responding well to the respiratory treatments they were applying.  To put it bluntly, things quickly became extreme. 

A decision was made that Ammon needed to be intubated.  This is where they put a tube down your throat and a respirator breathes for you.  Despite the weeks and months Ammon has spent in the hospital over his life, even with dire respiratory illnesses, he’s never been intubated.  This was something new, and it was our first indication that this was different, something new was wrong.  I left work immediately and drove quickly up to Primary’s.

The intubation process did not go well.  It took multiple attempts and Ammon continued to regress.  Once the tube was placed, Ammon stopped deteriorating, but he wasn’t improving either.  He was moved up to the PICU, and when I arrived at his room I counted 15 professionals working on him.  Many of them had worked with Ammon in his previous visits, and many of them know and love him.  He holds a special place in many of their hearts.  Dr. Sato came down from oncology and stayed next to Ammon over the next several hours, monitoring the other professionals and providing important direction.  She didn’t need to do this, it was after her own long rotation was already complete and she was actually on her way home when the call came that Ammon had been admitted.  When she finally left later that night we thanked her for staying with Ammon, and she simply replied, “It’s not a problem, he makes us all feel so happy.”  (When Dr. Sato came by today to see Ammon I made sure to give her a big hug and thanked her again).

Going back to when I first arrived at Ammon’s PICU room, the doctors spent the next hour trying to correct his breathing and other issues.  Ammon’s reactions didn’t make sense to them.  They would apply one procedure or medication with an intended purpose in mind and an unexpected result would occur.  One of Ammon’s doctors simply remarked, “It’s Ammon” as the explanation.  Ammon keeps them on their toes, sometimes causing the procedural book to be thrown out, and (whether it’s stated this way or not) moving forward by faith.  After trying multiple settings and procedures, someone suggested a different approach, and gratefully Ammon started to stabilize.  The lead respiratory therapist kept saying to the PICU doctors, “I really don’t know why it’s working, it shouldn’t be working this way, but let’s keep doing it.” 

After Ammon had been stabilized for an hour or so, Summer and I were assured and felt comfortable we could slip down to the cafeteria for a few minutes to grab a quick dinner.  I think it was around 9 o’clock or so.  After we had purchased our food and made a few phone calls, we were eating and trying to digest everything that occurred so far tonight.  A nurse we didn’t recognize came rushing into the cafeteria and asked if we were Ammon’s parents.  She said she had been sent to get us and we needed to come with her to Ammon’s room immediately.  We left our food, bags, and coats at our table and took the shortcut up to the PICU.  In approaching Ammon’s room, I again counted 15 professionals working around him, but they were moving much faster, there was more commotion, and doctors were talking over each other.  The concern on their faces and in the tones of their voices was immediately apparent, and not reassuring.  I looked at the monitors and saw that Ammon’s heart rate was not normal, and his oxygen sats were in the low 70s, like 70 and 71.  I heard the head PICU doctor asking if the respirator could be turned on any higher, and the lead respiratory therapist responded that it was already on the highest setting, there was no more to give.  I entered Ammon’s room and one of his doctor’s looked up and said, “We put the CPR board under him in case we need to start performing CPR.”  She must have thought I saw the board and knew what it was.  CPR?  What was happening?  “His heart rhythms are not good, we don’t know what’s causing it,” she said.  It’s Ammon being “tricky” again.  They decided to “bag” him, which is a respiratory procedure, and Ammon’s lead nurse, Nicole, said she would manually bag him all night if that’s what he needed (thank you Nicole).  It was amazing to watch hands moving everywhere and professionals working around each other, each seeming to be doing an important task; I really don’t know how they kept everything straight and how so much was getting performed all at the same time.  It was then that I noticed what appeared to be the crash cart (two crash carts actually) just outside Ammon’s room.  I knew what these are for.  If CPR doesn’t work they trying shocking your heart; it’s really the last procedure performed, the last line of defense.  If not for all the doctors and being in the PICU, Ammon might have passed away while we we’re down in the cafeteria. 

Minutes passed slowly and quickly, the doctors were baffled, and the discussions had seemed to take the tone of, “Anyone got any more ideas?”  They decided to try turning down the ventilator machines, continue manually bagging, and hope for the best.  It started to work.  Ammon’s sats rose to the low 80s and he didn’t have additional heart issues.  Was he starting to stabilize?  During this time, Dr. Sato pulled us aside and we had a very difficult discussion.  We’ve never had the DNR discussion.  Summer asked what DNR meant, and unfortunately I knew the answer to this one.  “Honey, it means do not resuscitate…”  Dr. Sato explained that Ammon had been through so much, and sometimes when the body just becomes weaker, with times of improvement followed by another round of gradual decline, that it’s the body’s way of saying, perhaps Ammon’s way of saying, I have fought the good fight.  I didn’t realize till right now how hard that is to write that.

I looked over at Summer, and then looked over at Ammon in his room.  He is such a special son to us.  He is a miracle.  While we we’re speaking with Dr. Sato, Ammon’s sats had continued to recover.  The procedures were working.   Ammon, true to form, was fighting through it.  It was yet another fight he was going to win.  In all of my hospital experiences, and observing other patients, I’ve never seen such strength of spirit be matched, time and time again.  Our response to the DNR discussion was clear.  Sometimes Ammon might need a little help taking the last steps to reach the summit of a new medical challenge, and if that means administering CPR followed by shocking the heart then he will receive that help.  We know it is the right decision for Ammon, should the unfortunate need ever arise again. 

Eventually, Ammon stabilized completely.  He’ll likely be asleep for days at least, if not more than a week.  We could be here for a week or several weeks; Ammon will let us know.  Thank you everyone for all you do for Ammon and our family.  Clearly, Coleson and Brynn have been loved and well cared for in our absence.  To put it simply, we are surrounded by angels.  Perhaps the one request we have is to just keep Ammon in your prayers.  As we gave him a priesthood blessing, it was important for him to know that he is loved, that he does have more to do, and that he will again experience and be able to express joy and happiness.  One other thought.  We have two good friends in our neighborhood that are continuing in their own cancer journeys.  One just started within the last week and the other has been traveling for some time.  Please remember Kathy and Casey in your prayers as well. 

We’ll post more soon.  Thank you.