We are home!

Ammon has slowly been doing better!  On Thursday, I was ready to go home.  He had a good night, he was off all his pain medication and pretty mellow.  He still has to be suctioned regularly and on bipap every few hours, but after a mellow day I thought, I can do this at home.  When I was consulting with the oncologists about Ammon's status, I asked if there was anything else we could do to boost his immune system and try to avoid hospitalization.  They looked at his labs and saw that his immunoglobulin levels were low.  Last fall when he was hospitalized, he received an IVIG transfusion.  It gives you extra immunoglobulin to help your immune system, especially in mucus secretions.  I really feel like that has helped him to stay well, until now.  We decided to give him a transfusion.  The PICU doctors said we could go home, if I felt comfortable keeping up with the same routine, after his transfusion.  Well, when we woke him up to do his first respiratory  treatment, he started crying, especially when they started his IV.  He stayed that way most of the day.  His heart rate elevated and work of breathing increased.  I felt like he was going back to the way he was when we came in.  The resident came in and said sometimes kids can have a reaction to the IVIG.  That's two reactions in a week, not good odds.  However, by 7 o'clock he was pretty much back to normal, but I didn't want to stress his body out and try to bring him home.  I felt defeated, tired, emotional, but I had to remind myself, it has only been a little over a week, he is still doing remarkable and he is still sick.  I had a sweet nurse that told me she would take good care of him, rub his head if he woke up and that I should go to the parent room to get a good night's rest.  I took her up on that and Ammon and I had a good night.  Around noon on Friday I was ready.  Ammon had been doing great until I put him in his wheelchair.  He started crying super hard, which caused him to cough up a lot of stuff, but then his oxygen levels lowered and we had to suction him a few times.  The PICU doctors were giving me the look like "Are you sure you know what you are doing?"  The whole morning I felt like I was being tested.  I made the call of how long he could stay off the bipap, when to suction him, etc.  It's what I do on a daily basis, but when you have trained doctors and nurses watching you, I start second guessing myself.  I knew he would be happier sleeping on his own schedule, being around Coleson and Brynn,  not having temperture checks every two hours.  I don't like the fact that I have to be the "mean" one to suction and move him around to make him cough and stretch.  I made the right call, though.  He is so happy today.  He doesn't seem sickly.  He is able to play with toys and listen to everyone argue about doing chores.  Today I don't mind.  I am happy to be home too.  I am so grateful for those who prayed for us! Thank you mom for flying out to take care of the rest of our family.  Thank you plasma donors (It takes a thousand). Ammon is Home!

Monday

Yesterday Ammon had to prove that he could breathe well without the ventilator.  He did good on his trials, so they took out the tube and turned off the ventilator.  Hooray!  One side effect of being intubated is possibly damaging vocal cords.  I was worried about that since they made about 5 attempts before they finally placed the breathing tube correctly.  He did cry with a horse little voice, which sounds so sad, but I am so grateful.  I don't know what I would do if he couldn't cry to tell me when something is wrong.  He has a lot of mucus in his lungs, so he has to be suctioned frequently.  He is on a bipap machine, but looks so comfortable.  His seizures have been more frequent which haven't allowed him to sleep as soundly or breathe as consistently as normal.  I am hoping those will start diminishing as he gets better.  Today our goal is to cough up all the secretions in his lungs and prove that he is stable.  Thank you for all the thoughts and prayers.  He is doing so much better than I anticipated.  I just love my little boy.

We'll Take It...

Quick update on Ammon.  Since our scare on Wednesday night, Ammon has continued to remain stable most of the time and even make improvement.  When the doctors first intubated Ammon and put in the tube, one of his doctor's said it could be a while before it was removed.  Since this was our first time being intubated we didn't know what "it could be a while" meant.  I asked, does that mean 12 hours, 24 hours?  The doctor responded, "Let me put it this way, it could be a week or two weeks; if it comes out in under a week consider yourself very lucky."  Well, many of you know my thoughts on luck and coincidences.  Miracles have nothing to do with coincidences or luck, they have everything to do with faith and the reality and existence of a loving Heavenly Father coupled with many heartfelt prayers.  During rounds this morning we talked about Ammon possibly having the tube pulled tomorrow (Sunday) morning.  That doesn't mean Ammon is ready to leave the hospital, but it is a still a miracle.  Even if was pulled two weeks from now it would still be a miracle.

It's humbling for me to sit next to Ammon's bed, holding his hand, and to a large extent be able to discern of his strength.  I realize this is a father talking of his son when I say this, but there is a strength in being near Ammon that is real and tangible.  In spite of all the machines, procedures, and medicines that continue to assist Ammon in sustaining his life, he refuses to be broken.  I guess I'm just surprised to be so close to losing him Wednesday night to have him make such significant strides in just a few days.

Ammon has been awake at times over the past few days and we've been able to talk with him and read him stories.  When he's experiencing seizures or other pains we've been able to gently sing a song in his ear and help him to pull through it.  The tube goes right through his vocal cords, so on the few occasions he's been crying there is no sound at all.  The tube is a new experience for him as well, and I can only imagine how odd and uncomfortable it feels to have something in your throat and not be able to swallow it down or cough it up.  In addition to some continuing medications, Ammon's blood counts have dropped a bit and the doctors feel like a transfusion might be in order (we should know by tomorrow). 

Coleson and Brynn are doing well and have had a wonderful time being with friends and family over the past few days.  They have especially enjoyed having Maga in the home.  Coleson read through the previous blog post and has an understanding of what Ammon's experienced, but we generally tried to shield Brynn from some of the more extreme aspects of this experience.  I was surprised yesterday morning when I was at home and Brynn asked if Ammon almost died.  She is a little girl full of compassion for her brother, and frequently shows it through the service she performs.  She's also is a little girl with some very good ears and a capacity to comprehend the gravity of certain situations.  I'm nervous what she's heard Mommy or Daddy say on other occasions and possibly relaying in Primary or pre-school. 

Thank you again to everyone!  As one example among so many, a good friend brought in Tony Burgers last night.  I've never cried over a Tony Burger, let alone any hamburger, so that was a first.  Ammon wants us to express his gratitude as well.  Thank you for being the angels silently pushing at the back of his handcart through the recurring snow and cold.

Here's a picture of Ammon on Thursday morning; about 12 hours of being stable.

Here's another picture from Friday morning.  You can see the improvement.

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.

Happy New Year!

We have had a great New Year.  We made it through Christmas and New Year's Eve with everyone being healthy and able to make it to family parties.  Amazing.    I feel so blessed and grateful when we are well.  There is a huge difference on the days that Ammon feels good.  It's like when your baby sleeps through the night for the first time.  You don't even know what to do the next day because you have energy and time to be normal again.  Ammon even went to school for two days and life seemed so good.  Then everyone got sniffles and coughs, but nothing more severe.  I am hopeful the trend continues the next few days and weeks.  Well here are some pictures to sum up some of the things we did in December.

A few days before Christmas, Ammon got the best present of all... a manila envelope full of get well/ Christmas cards from the Alpine Seminary Students.  They don't even know Ammon.  It truly was an envelope filled with love.  It came at the perfect time.  Ammon had a rough month all the way up to Christmas.

Brynn started dance class a few months ago and had her first recital.  She was so excited to wear make up for the dress rehearsal.

She danced to "The Little Drummer Boy"  (second over from the right)

Brynn has become very fashionable.  This is how she dressed to deliver neighbor treats.  Luckily, little miss mismatched has helped our 4 year olds not be too out of style.

On the Sunday before Christmas, we got to sing for part of the Sacrament program at church and play the bells with another family.

That night we had a Fiji style dinner.

This was Brynn's favorite gift.  She has worn it everyday since, even if it is 10 degrees outside.

 Yes, Santa did bring Coleson Legos again.  He got this spider from his cousins.

At the beginning of December our sister-in-law, Feather, got married to Guillermo. We are so happy for them.  Brynn loved being a flower girl with a sparkly dress.  

We had fun taking cute pictures. 

 Ammon was still being taken care of by the wonderful nurses at Primary Children's hospital that night.  He was well enough, though, to enjoy music therapy that day.  So sweet.