Thursday, October 15, 2015

Archives: 6/22/2014 The Penthouse

Posted Jun 22, 2014 5:46pm
Isaac graduated from the PICU yesterday! We are up in the penthouse now, on the 9th floor of the hospital, which is primarily a pulmonary floor. The PICU doctors and respiratory therapists felt comfortable moving Isaac, even though he still qualifies for the PICU due to his oxygen/bi-pap needs. He's doing really well up here, and we are excited about the private bathroom. The pulmonology team has a system going for weaning Isaac from the bi-pap. Today he has done his first 90 minute session off the bi-pap with 5L of high flow oxygen. This afternoon he will do another 90 minutes at only 4L of high flow, with a break in the middle for a suction, cough assist, and some extra breaths with what's called the easy-pap. Each day brings new goals and plans for Isaac's care, and there is no set plan for going home, no specific goals to get us there. But we are heading in the right direction.
In other news, Happy Anniversary to my parents today! They are both here in Colorado with us, and hopefully they will sneak away for dinner or coffee or something together.

Archives: 6/22/2014 Answers in a Baby's Smile

Posted Jun 22, 2014 5:19pm
This is daddy (Jeremiah) doing an update, since Jenna has done all the others...
My wife, Jenna, and I are mates for life. We are very different in many ways. She is warm and compassionate. I tend to be cold and calculating. She is the worst procrastinator I've ever met. I prepare so far in advance it is sometimes ridiculous. She tends to give people the benefit of the doubt. I make people prove themselves. Jenna's faith in God is much stronger than mine. I'm an analytical researcher by nature, and if I don't see numbers and hard data to back things up, I question them and am very skeptical. I do believe in God, but I question Him. I know that my head would probably explode if I knew God's will for everything, but I still ask "Why?" I sometimes find myself shaking my fists at the sky and screaming, just taunting the Almighty to a showdown. Then I find myself on my knees, sobbing and thanking God for allowing my hands the steady strength to revive my son when he almost died. Then I question God "Why did you let me save his life for it to be taken in a few short months?"
In the last four days, I've made a doctor and my 'shrink' cry. Not because I was mean to them, but because I asked them questions that they couldn't answer. They couldn't answer the questions not because they were under-educated, but because my questions have no answers. WHY?
All I know is that when I see my boy, Isaac Gregory, my heart skips a beat. When I hold him he looks deep into my eyes and smiles as if he himself is trying to answer my questions for God. His smiles make me feel happy and content. My time with Isaac is very precious to me and I will cherish every last minute of it. I know that when this purgatory that we call earth is over, I will get my questions answered, and I will get to teach my boy to ride a bike in heaven. That will be a good day.

Archives: 6/20/2014 Hiccups

Posted Jun 20, 2014 5:42pm
Isaac has the hiccups. It's just so darn cute when he has the hiccups. I once took a video of him, staring off into space, hiccupping. It was at least 30 seconds of just that. I sent the video to my sister, Kara, because I knew she would be as amused as I was. I will miss seeing him hiccup. I will miss seeing his scrunchy face that he makes when he's sleeping and needs to squirm a bit to get comfortable. I cry at least once a day, and last night I cried giving Natalie a bath. I cried because I know, unless we are granted a miracle, that I will never get a picture of my two kids playing together in the bathtub. I cried because I know Isaac will never build a block tower. I walked past the elementary school baseball diamond on my way to the post office, and I cried because I will never watch Isaac play little league. It's a daily struggle, remembering to focus on today, to refuse to focus on the impending loss. I mean really, he may never have wanted to play baseball anyway. Jeremiah and I remind ourselves and each other that Isaac isn't sick with something. Nothing is attacking him, he is simply being who he was designed to be. He is fearfully and wonderfully made, and he was made in a way that we describe as SMA1. He was created to go to God sooner than we think is natural, sooner than we will ever be comfortable with, too soon.
I read a quote the other day that gave me some peace, by a Dr. Rachel Remen. "Healing may not be so much about getting better as about letting go of everything that isn't you- all of the expectations, all of the beliefs- and becoming who you are."
Yesterday, Isaac did three sessions off his bi-pap, and he tolerated it well! So this morning, he got to try the high-flow nasal cannula at 7 liters of oxygen (down from 8). This evening, we're going to see how he does at 6 liters. As he progresses, the pulmonary team will decide when he's low enough to leave the PICU and head to a regular floor. He has been in a great mood today, smiling at everyone who comes in, laughing at Grandma, and sleeping well at naptime.
We continue to be amazed and so grateful for everyone's generosity of spirit as we get through our days. Every prayer, note, visit, meal, donation, toy, card, kind word, and hug is appreciated, and nothing has gone unnoticed. Thank you!

Archives: 6/19/2014 Sol y Sombra

Posted Jun 19, 2014 1:10am
"Back in high school, I read James Michener's "Mexico," a book more or less about bullfighting. One of the themes in the book is "sol y sombra," or "sun and shade," referring to the different seats available at a bullfight. I looked out the window from Isaac's hospital room this afternoon; clear blue sky on one side, with a perfect line of heavy rain-clouds to the west. After this sunny, beautiful afternoon came the equally beautiful thunder, lightening, hail, and rain. And every day of this hospitalization has felt like that, sol y sombra. Hot and burning sun, refreshing and cool shade. Warm and comforting sun, dark and chilling shade. It's a matter of perspective. And, you know, Colorado weather.
The PICU is full to capacity tonight. I heard two code blues this afternoon. Today I contacted our local area services on aging to ask about Medicaid for a child with a 'life limiting illness.' I called Families of SMA to ask about getting a car bed so Isaac can leave the hospital, when that day comes. I registered Isaac on the SMA registry for clinical trials. Maybe there is something that can help him. More likely there is some way he can help others. I comforted Isaac while he cried for almost 3 hours because he was so uncomfortable. What parent hasn't done that?
Isaac had three sessions off the bi-pap today, and he tolerated each of them very well. The middle session was an hour and forty minutes, a full hour longer than any other session. He had a Cough Assist session right in the middle, which extended his ability to breath comfortably. If I haven't explained, the CoughAssist is a machine that forces air into Isaac's lungs and sucks it out again, mimicking a cough. When he isn't on the bi-pap, he is on high flow oxygen- 8 liters, which is a lot. Too much to go home on. So we stick with the PICU until he can safely and comfortably tolerate 3 hour long sessions each day. After that we go onto a regular floor to wean him off so much oxygen, learn to use equipment, and then, God willing, go home. During the evening session of nasal cannula trial, I was able to try to nurse Isaac. I have to pump beforehand so he doesn't really get any milk, just a few drops. It took him a minute to remember what he was supposed to do. His swallow is very weak after 7 days of no nursing, not to mention the baseline weakness from SMA. But he enjoyed it, and I felt almost normal for a moment. He is resting very comfortably now, thank God. It's past my bedtime too.
Final thoughts for the night: I met the hospital chaplain this afternoon. The poor guy came in knowing very little about Isaac, just that he's a baby in the ICU. He asked me "So, what's going on?" I told him, and he was shocked, speechless for a moment. Then he said "Well, that is...heavy." Heavy. The best word I have heard to describe this whole ordeal. The best word to describe how I feel. Jesus carried his heavy cross, and he was beaten half to death before he even began. He only had one person to help him carry it. Jeremiah and I have all of you, and our thanks will never be enough. Jeremiah and I have Jesus, and that will always be enough."

A friend and co-worker shared the following prayer in response to this update:
An Inspirational Prayer:
"Do not look forward to what may happen tomorrow; the same everlasting Father who cares for you today will take care of you tomorrow and every day. Either He will shield you from suffering, or He will give you unfailing strength to bear it. Be at peace,then. Put aside all anxious thoughts and imaginations, and say continually: "The Lord is my strength and my shield. My heart has trusted in Him and I am helped. He is not only with me but in me, and I in Him."
--St Francis de Sales

Archives: 6/17/2014 Gratitude

From 6/17/2014

This has been one hell of a week. Last Tuesday we came here to deal with pneumonia and low muscle tone. Today we are dealing with new teams of doctors, neuromuscular teams, nutritionists, social workers, palliative care, equipment, stress, fear, sadness. But in the midst of this, mixed into every moment, I feel such gratitude. I will try to express that here, but I know I will fall short.
I am grateful for:
Jeremiah, every moment, for saving Isaac's life last week, for being my rock, for sharing my pain.
My mother, for being here. For everything.
My mother in law, for taking such good care of Natalie.
Pam and Neal, for being here, for being chauffeurs, for caring.
My sisters, for their love from afar, the prayers, the pictures, the monsters :)
Katie, for her love, for the amazing pictures she took of our family this spring.
My brother Dan, for Cookie Monster, for being a shoulder to cry on, something I've never done before.
For Juli, for organizing, praying, delivering, fighting, loving, being.
For my co-workers, for the food, snacks, gift cards, prayers, support, cash. You are amazing.
For our church, Guardian Angels, Father Alan, and the Knights of Columbus, for the prayers, meals, yard work, and gas money.
For Uncle Greg, Isaac Gregory's namesake, for saying that he would give his life for Isaac's if he could, and meaning it.
For Brian, our best man, for the Fathers Day feast.
For Renee, for being the best neighbor, for letting Natalie play.
For all of the staff in the PICU, for your intentional kindness, knowledge, and love of your work. For calling Isaac "nugget, tator tot, bub" and other such sweet things.
For all of the prayers, for your belief in the power of prayer, for hope.
For God's grace.
Thank you.

Archives: 6/16/2014 The Good, The Bad, and the Ugly

From 6/16/2014:

The good news is that Isaac has tolerated two sessions off the bi-pap machine today.
The bad news is that we received the results of the genetic test earlier than expected, and Isaac is positive for SMA, Type 1.
The ugly, heart-breaking, unbelievable...Isaac's muscles will continue to atrophy until he passes away. We have a few more months with him, maybe a year. The doctors say he is on the weaker end of Type 1, which is the most severe.

Next up, we get him ready to come home. We learn how to insert his feeding tube, run the bi-pap, use the cough assist, and we love him like crazy. We figure out how I balance work and spending as much time as possible with my son before he goes on to be with The Lord. And we pray constantly for a miracle.

During a break from the bi-pap machine 

Those fingers still tasted pretty good even with that mask in the way...

Archives: 6/16/2014

After almost a week in the hospital, I posted this to CarePages.  6/16/2014

"Isaac is still in the PICU, and he will be until he is able to tolerate longer periods off the bi-pap machine. The machine basically helps his lung inflate and deflate as he takes his normal breaths. His muscle tone is so low that he isn't able to recruit his respiratory muscles very effectively. He managed two sessions off the machine yesterday, 30 minutes and 45 minutes, and we are so proud of the little guy! It's such hard work for him, and he is a trooper. He keeps smiling at us, and loves interacting with all of our visitors. We should get the results of the genetic test tomorrow or Wednesday, and we are still praying for a miracle. God can do anything, and we pray that His will be done.
We are so grateful to everyone for their spiritual, emotional, physical,and financial support. Feel free to send a private message for our mailing, physical, or email address, or phone number.
Thank you, and keep on praying. My special request is that everyone pray a Rosary today, with the intention that Isaac does not have SMA."

Archives: 6/15/2014

I am finally getting around to posting all of the archives from the CarePages site that we started almost a year and a half ago.  Isaac had been hospitalized for just a few days, and I asked my oldest sister to get the CarePages up and running.  We have maintained updates about Isaac and our family on an off since then.  I will post each update titled "Archives:__/__/____"

From June 15th, posted by my sister, Amy:

"Just before his four month birthday, Isaac had an unresponsive episode after aspirating his saliva. His daddy saved his life and Jenna and Jeremiah brought him to Children's Hospital at the urging of their pediatrician. Currently they are working to stabilize him and to find the cause of his low muscle tone, which Isaac has had since birth. The pulmonology, genetics, and neuromuscular teams all
agree that Isaac likely has Spinal Muscular Atrophy Type 1 (SMA 1). We are waiting for the resultsof genetic testing to know for sure. If it is SMA, Isaac will continue to get weaker until he eventually passes on. Jenna and Jeremiah have been given one year, maybe two, to love and enjoy their sweet boy. Please continue to pray for Isaac, his parents and family. Pray for a miracle of complete healing. Offer up little daily sacrifices in Isaac's name such as skipping a coffee or dessert. Pass on this prayer request to anyone and everyone. Isaac is a gentle soul, full of smiles, love, patience and courage. He is named for Isaac, the son of Abraham. Abraham was asked to sacrifice his son, but was spared at the last moment. Our hope is that God will spare Jenna and Jeremiah the loss of their son.."

Friday, October 2, 2015

A Long Time Coming, Part 2

Our story continues...still on September 16th, the day Isaac was last admitted to the hospital.

When Jeremiah arrived at the hospital with my dad, he was a wreck.  Still recovering from his concussion, the day's events had been even harder on him than I think they would have otherwise.  Fear, adrenaline, and exhaustion are bad enough- top it off with a concussion headache and worsened insomnia, and he was in a bad place. Jeremiah's first concern was Isaac's brain.  His oxygen had been so low for so long, but I assured him that he had been watching me, tracking, and trying to be his good-natured self despite everything.  Isaac eventually calmed down enough to get some rest, and Jeremiah and my dad headed home.  After 3 nights in the PICU, we transferred up to the 9th floor.  Because those rooms are quieter and darker (and therefore somewhat friendlier to the concussion minded), Jeremiah agreed to stay with Isaac so I could go home.

I came home to our sweet Natalie, who only wanted to cuddle with me and hold my hand everywhere I went in the house.  We snuggled up on the couch to watch Cinderella (the new Disney movie, and it's as great as you can imagine.  I hope I always remember the look on Natalie's face when she realized Cinderella was on her way to the ball.), and after she was asleep I stayed up late eating Doritos and watching Friends.  I knew I should just go to sleep, but those amazing co-workers of mine had dropped off a kitchen full of snacks, and after all these years I can't resist that cool ranch flavor.  The next morning, I took Natalie to the Knights of Columbus pancake breakfast before Mass. I talked to Jeremiah, who said the night had gone well with Isaac, and he was okay with staying another night with him. Natalie and I would come down for the afternoon, and that night I would come home, avoid the chips and Netflix, and get some real sleep.

When we arrived at Isaac's room, there were many more people there than there should have been.  A doctor or someone assured me that everything was fine.  I brought Natalie in and sat her on the couch, looking to Jeremiah.  He also assured me that Isaac was fine now, he had just had a treatment and was having a hard time calming down and getting his saturation back to normal.  After a long while, it was apparent that Isaac was not recovering.  We had him on 100% oxygen (about 15 liters), he was exhausted but could not sleep, the acetaminophen wasn't helping him, his heart rate was sky high again, and he was whimpering and crying and grimacing.  Nothing could console him, though he obviously wanted to be consoled.  At one point I was talking to him, telling him that his sister was here.  Mid-cry, he paused to open his eyes and look for her.  He saw her, took a breath, and then couldn't hold back the tears anymore.  Jeremiah and I talked, and we agreed that we would both stay with Isaac that night.  I called my parents, who were a few hours away, and asked if they could come get Natalie, explaining that Isaac was having a really rough afternoon. We called our priest, and asked if he could come the next day to anoint Isaac. We honestly felt that this was probably the beginning of the end.  We were waiting for his next breathing treatment, thinking it would either help him or make it all worse.  If it make it worse, we talked to the doctor about not intubating Isaac.  We wanted to be able to take him home.  After my parents left with Natalie, Jeremiah and I said our goodbyes.  We took our last pictures, we talked to Isaac about all of the amazing things we have gotten to do together, I told him about the day he was born.  We told him it was okay to go, if he was ready.   He calmed down enough in the dark room, with no sounds but our voices, to finally fall into a restless sleep.  When the respiratory therapist arrived to help with his treatment, the nurse and doctor came along too.  Jeremiah and I took over, wanting to be the ones with our hands on our son.  Clenched jaws, clenched stomachs, steady hands, reassuring voices.  He made it through the treatment, it went so smoothly. We changed out his mask, gave him yet more fluids, more tylenol, and he fell asleep. This time he slept soundly, with me curled up on the end of his bed and Jeremiah asleep on the couch.

At 7:30 in the morning, Isaac woke up smiling. Bright eyes, happy coos. He wanted to watch his mobile. He wanted to read stories, he laughed, he was a completely different version of himself than 9 hours earlier.  Jeremiah and I breathed very tentative sighs of relief, still exhausted from the day and night before.  Isaac took a long nap that afternoon, just before our priest arrived.  We talked to him about funeral homes, cemeteries, and where to hold the funeral.  Not because we still thought Isaac was going to die at any moment, but because we know that his time could come soon, and this was a conversation we had avoided long enough. Father Alan anointed Isaac as he slept peacefully, and Jeremiah and I left for a care conference.  At the meeting, we talked to Isaac's pulmonologist, Oren (he asked that we call him that, but that his daughter's friends still have to call him Dr. Kupfer:) about our wishes for Isaac in light of all the recent events.  We decided to finally look into hospice, knowing that there isn't much that the hospital can do for Isaac that we can't do at home.  We have had enough experience with these scary events to know what to expect from Isaac as he recovers, and for the most part we don't need blood gas levels and IVs and chest x-rays and blood pressure checks every 60 minutes or any of those other things that have been valuable for Isaac but are now just another source of anxiety.  We have had truly amazing experiences at Children's Hospital, but we still don't want to be there.

 Last summer, when we first brought Isaac home after his 4 week hospital stay and diagnosis with SMA, we just wanted him home.  We weren't thinking much about nursing or hospice or anything.  After his second hospital stay last September, we decided to pursue more nursing help than we had over the summer.  We now have private duty nursing 5 days a week, and thank God most of Isaac's scary episodes have occurred with one of them around.  With the support we have from our families, nurses, and friends, we can handle Isaac's medical needs at home, where we can also provide his emotional, physical, and spiritual needs. It may sound funny to talk about spiritual needs for a 19 month old, but I tell you- Isaac's favorite hour of the week is the hour we are at Mass, with him in the very front row.  He laughs the greatest, loudest, most joyous laugh when Father walks over to bless him before communion.  He knows he is close to home, and he loves it.  After meeting with the hospice nurse, we learned that we can't continue to have private duty nursing and hospice care at the same time.  We were disappointed, because we were looking forward to the available 24/7 support of a hospice nurse, someone who we could call at any hour to come be with us when Isaac goes, someone who can sympathize with our grief but not feel it as acutely as a family member would, someone who has helped families through those steps.  Instead, we are using palliative care, which means a nurse will stop by 1-2 times a month to check on us, and will be available for phone consultations if we are deciding what to do for Isaac.  Another resource, even if it isn't exactly what we were aiming for.  Really, it doesn't matter.  We have no idea how the end will be.  We pray it will be quiet and peaceful and at home, but it could be quiet and peaceful and at the hospital. It could be something we see coming for days, for hours, or just moments.  It could be in his sleep, during a treatment, in the car.  We just don't know, and that,  I suppose, is why it's okay that we don't have hospice in place.

After the care conference, Jeremiah and my parents went home.  Isaac woke up feeling great after his long nap, and he and I spent the next three hours just playing.  Cars, blocks, dance party, dinosaurs. He laughed more that evening than I had heard in weeks combined, and I went to sleep forever grateful for those hours. We took Isaac home the next afternoon, still reeling from the emotional rollercoaster of the past days.  We have been home now for a week and a half, and Isaac is still doing great.  He has his ups and downs, easier treatments and harder treatments, generally uneventful days and moments that get us all shaken up again.  He has started to get startled more often, more anxious, and I have heard him cry out in fear at least ten times in the past three days, which is unlike him.  But he also spent most of yesterday talking and cooing, and after an afternoon of watching cartoons today, he laughed his adorable little "heh, heh, heh" all evening.  Now more than ever before, we are taking this one day at a time.  I didn't know it was possible to live in the moment more than we had been, but lo and behold we are managing it.

We have so many people to thank for their support and generosity, I really don't know if I can do it.  I honestly lose track.  But I will take a moment to thank the residents of Life Care, where I work when I can.  They held a bake sale the other day, which I think they do once a year.  During the planning stages, the residents decided to donate the proceeds from the sale to our family.  I was so surprised when my friend Juli stopped by to drop off the proceeds, because I didn't know about the event.  I was so touched by the gesture, by the love of those wonderful people that I get to see now and again.
Thank you to everyone for your prayers, your love, your friendship.  We couldn't do this without you.

Thursday, October 1, 2015

A Long Time Coming, Part 1

Well, friends, I have been thinking about this post for over a week.  I wanted to share with everyone what was going on, but I also needed some time to think about all of this privately, and then to rehash the past few weeks with Jeremiah.  Tonight I feel like I can talk about this without crying, but you won't really know if I do.

The morning after my last post, I took Natalie to a song and story time at our town hall.  She had so much fun, and was a good sport about going straight home afterward.  We had to walk through the town park to get home, but I promised her that we would go home, do Isaac's treatment, and then we could all come back to the park.  Isaac had woken up before we left, but I had asked Jeremiah and our nurse to wait until we returned to do his breathing treatment.  Our nurse had him all ready for the treatment when we got back.  I walked past his crib to go wash my hands, and stopped to smile at him.  He grinned back with his bright blue eyes, as sweet and happy as can be.  I had picked out a bright blue t-shirt with a tricycle on it, and it looked so great on him.  He was definitely in the best spirits since his most recent hospitalization, and I couldn't wait to get him in his stroller and out to enjoy some fresh air and sunlight.

Natalie played with some toys while Jeremiah, our nurse Jessica, and I all geared up for Isaac's treatment.  I decided we should do a little nasal suctioning before doing his coughs- something we had always done until the last couple of days.  Isaac's nose had been bleeding a little due to all of the extra treatments and dry air, so we had been going easy on him.  Ugh, my heart is starting to race just thinking about what happened next.  I suctioned his nose, we started his cough assist (a reminder, this is a machine that forces a set volume of air into Isaac's lungs, then forces out a larger volume of air to mimic a cough).  With the first exhale, blood came spurting out of Isaac's nose.  The next several moments were a flurry of trying to suction blood from his nose and mouth, trying more coughs to get him to breath, trying the 'inhale' setting to force air and oxygen into his lungs.  Isaac's oxygen saturation dropped very quickly, down to 80%, 70%, 50%, and lower.  Our nurse, God bless her, calmly told Jeremiah that she needed him to call 911.  I grew semi-hysterical when I saw Isaac's face covered in blood, and I tried to wipe it off in between suctioning and coughing and breathing.  My first thought, and a recurring thought was once again "not like this, Lord, please not like this."  Please don't let our son die with his face covered in blood.  Jessica continued to calmly and firmly count the breaths she was giving Isaac, to help direct us, and to keep us as calm as possible.  I switched suction catheters, switched cough assist settings, and tried to keep up with the blood.  All the while, Isaac's oxygen levels kept dropping, 40%, 30%, back to 40%.  But his heart, his heart kept beating. And from underneath the noise of the suction and the cough assist, I could hear Isaac's occasional cries.  He was still breathing on his own, able to use his breath to trigger the cough assist.  But he turned blue, and then grey, and then white. Natalie climbed up on the chair next to our crib.  "Mommy, is Isaac sick again?"  Yes, sweetie. We kept talking to Isaac, telling him we were here and to keep fighting, that we could hear him crying, that we knew he was trying, that we were trying to help.  Mommy is here, Daddy is here.  "And sister is here, too," she piped in from her perch. The EMTs arrived, a different team than responded in July, so Jeremiah quickly oriented them to Isaac and his equipment.  Someone took over for Jessica holding the cough assist.  I called our neighbor, Virg, who came to take Natalie to her house.  Natalie knew the drill. The EMTs cut off Isaac's new blue t-shirt, they wanted to start an IV, we told them it wasn't worth their time, so they asked our permission to do an IO.  Our other nurse, Ele, had just been explaining those to me two days prior.  It's when they drill into the bone in order to place an IV.  We gave the go ahead, and out came the little drill.  Piece of cake.  I heard an EMT say that we didn't have time to get Isaac to Children's Hospital. I remember saying "I'm sorry, but that is the only place we will let you take him.  Get a helicopter if you have to."  Later I thought how silly it was that I started with "I'm sorry."  We started to get Isaac ready to transfer to the gurney, his oxygen was still barely 50% going on about 12 minutes now.  As soon as he was on the gurney and exactly halfway out the door, I saw his oxygen shoot back up to 91%.  I shouted to Isaac that he was amazing, I shouted to Jeremiah that it was up in the 90s.  It was a towel under his shoulder blades that had done it.  At that moment I felt calm, and I knew he was going to make it- at least for now.  Jeremiah and I ran partway down the street as the ambulance took Isaac one block away, to the baseball field at the elementary school.  I remember pausing in the street, not knowing if I should stay by the ambulance or run to the end of the road and meet it there.  In the end, I ran down, talked to Jessica about leaving right away for Children's so Isaac wouldn't be alone in the ER for very long, stopped to tell Virg what was happening, and running back to the house to gather a backpack of essentials.  I wanted Jeremiah to ride with me, thinking that the helicopter would be taking off any second.  But he was in the ambulance with Isaac, and I didn't know what was going on, so I just drove.

I ended up arriving at the hospital a full 30 minutes before Isaac did, and it's a 45 minute drive from our house (or maybe a 37 minute drive that day...).  The security guard in the emergency department was worried that I had come to the wrong hospital, or that the helicopter took Isaac somewhere else.  I frantically called Jeremiah, who explained that the chopper had just left and would be about 20 minutes.  Later, going over the events, Jeremiah told me that he and the EMTs spent another 20 minutes in the ambulance trying to get Isaac stable enough to fly.  His oxygen stayed up as long as someone was using the inhale setting on the cough assist.  This was a brand new setting for Isaac, one that Jeremiah had thought up about a week prior, and set up with the help of our pulmonologist the day before our last hospital discharge.  It basically turned his cough assist into an ambu bag, but one that no one has to squeeze over and over or worry about pressures.  That setting is what was keeping Isaac alive for at least 45 minutes, and thank God the battery held its charge.  I met Isaac in his room, and the nurse who led me to him assured me that he was stable, that he was doing fine.  I rushed to him, to reassure him, to kiss him, and to reassure myself. He was so mad, and scared, and looked just awful and exhausted.  The respiratory therapists were struggling to find a mask and headgear to fit him (Isaac's had been left at home, attached to his ventilator).  The third one they tried at least gave him a decent seal, but the headgear cut into his cheeks and the mask all but covered his top lip.  It looked incredibly uncomfortably, but at least he was breathing.  I reviewed the ventilator settings with the therapist so he would be on the correct mode (Passive PC AVAPs, tidal volume 160 cmH2O, EPAP 8, IPAP min and max of 32/20, increased due to respiratory distress, with a backup rate of 14, in case you were wondering). While we waited to transfer, I recited the Gruffalo.  Isaac locked his eyes on me, trying to block out everything else.  He even made a happy sound when he heard the voice of a nurse that he liked, and he looked around for her.  That was about as good as it got- the moment anyone else came near him he was all tears and crying again.  I don't blame him.  I can guarantee I have never felt as awful as he must have felt that day.

We transferred up to the PICU pretty quickly.  His CO2 levels were very high, but his chest x-ray still looked pretty good.  An amazing nurse named James Brown managed to place an IV, because the IO in his bone had come loose.  We were worried that it could have broken his leg, so they ordered an x-ray (it didn't break).  The medical team knew us and Isaac, and no one tried to tell me he would have to be NPO.  They ordered the right dextrose, they special ordered his formula, they notified his team, they gave him Tylenol without me having to ask for it.  They were so great. Within hours, Isaac's CO2 was coming back to normal, we had weaned him down to 3 liters from 15 liters of oxygen, and he was getting his formula along with extra fluids.  We talked with the pulmonary and respiratory team to come up with a plan.  How do we keep Isaac's airway and lungs clear without irritating his nasal passages and starting another bleed?  We took it one step at a time, one treatment at a time.  First step, let him sleep.