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Ever since Isaac was admitted to the ICU a week ago today, we have been working toward extubation.  Every treatment we tried, every therapy we did was to that end - to get him breathing on his own rather than with the ventilator and take out the breathing tube.  Finally, on Sunday morning it was time.  All of his xrays and labs and stats indicated that Isaac was ready to breathe on his own.  They weaned Isaac off of his sedatives so that his lungs would work at full capacity.  He was answering yes and no questions and looking into my eyes.  It was so encouraging!  We could communicate!

As they prepared to remove the tube and the tape that was holding it in place, they removed these arm restraints that had tied him to his bed and prevented him from pulling out any tubes for the past 7 days.

  
I took one last picture before extubation. 

 

And then at 10:30, Isaac was finally extubated!  And he smiled!

Right after extubation, efforts were made to encourage Isaac to strengthen his lungs.  The nurses tried to help him blow this pinwheel and blow bubbles.  His efforts to blow were more of a slow, diminished exhale.  No bubbles.  No turning pinwheel.

Soon, Isaac had some very special visitors.  The branch came and taught him a primary lesson about faith.

Hilary Weeks (yes, the real thing, in person) and her husband Tim came.  I know!  Unbelievable!  My oldest friend in the whole wide world (as in friend I have had the longest, not 87-year-old friend) who is my Hilary Weeks Stalking Society partner got in touch with Hilary and told her about our situation.  Neither of us ever expected a visit.  I was so touched by her willingness to come here.  Isaac's favorite song is "Brave" (and if you don't have Hilary's newest album Say Love yet you are missing out.  Do yourself a favor and go to iTunes and download it right after you get done reading this post,) which has become so much more meaningful here in the ICU than when he would belt it from the third row of the minivan.  Hilary talked and laughed and cried with us, then she sang "Brave" to Isaac before she and Tim left.

Sunday afternoon, I held Isaac in a sitting position for about one minute.  He was exhausted afterward.

We put clothes on Isaac for the first time since he was admitted so we could take him for a walk.  He has remained naked in the hospital because he has been running such high fevers.  No clothes also meant easier access to all of his tubes, monitors, and parts.  We slowly lifted him into a wheelchair lined with pillows and blankets and pushed him down the hall to see the Christmas tree and look out the window.

When we got back to the room, Isaac and I played dinosaurs for a minute before our next exciting visitor arrived.

You know that oldest friend in the world?  She surprised me and came to visit!  She lives over 300 miles away on the opposite end of the state and drove all the way here and then turned around and drove 300 miles all the way back home just to come see me.  She brought gifts from my family, gifts for Isaac and I, and cheesecake from the Cheesecake Factory - seriously (sidenote:  I haven't had an appetite at all while we've been here.  I even forget to eat, which is NOT normal for me.  But that slice of cheesecake?  Ate the whole thing.  Every last crumb.  Yum.)  Her timing was perfect.  Her gifts were thoughtful.  I am so blessed to know her.

It was so fun for Isaac to open the gifts that Brandi brought with her.  It was so fun for me to see him so alert and active.  This one was from my Grandpa Holyoak.

And then....THE BEST VISITOR OF ALL!! Daddy came.  Jeff last saw Isaac on the day of admission and spent the week in training at a hospital in Nevada.  He got home early Saturday morning to spend some time with the kids.  Then they drove up to see us after church.  Isaac was so happy to see his daddy.

And I was so happy to see my kids!  There are strict visiting restrictions in the ICU - No Kids Allowed.  So daddy hung out with Isaac in Room 9 while the kids and I ventured around this place Isaac and I have been living for the past week.

 We found the super-cool Superheroes on the 3rd floor. We enjoyed dinner together in the cafeteria, including dessert. (It felt SO GOOD to have a meal with my kids!)

Grandpa and Grandma Dansie also came to visit last night.  Isaac was so happy to see Grandma.  She brought some very cool safari animals for him to play with.  Grandma and Grandpa took the kids home to get ready for bed so Jeff could stay a little longer with Isaac and I.  Isaac got a bath-in-bed, brushed his teeth, and then we had prayers together before daddy left to go home.

Our family has been so touched by the outpouring of love and support that we have received.  So many people are helping with our children at home, and with the finishing touches on our new house.  Several friends have made the trek up here to visit or sent gifts or notes.  Isaac's buddy Max came to visit and brought this awesome BYU present. 

Max's mom, Jessie, brought me this beautiful painting depicting a mother with her two children under the comforting watch and within the embrace of an angel.  It is such a physical representation of the angels I have felt round about us. (D&C 84:88).

Aunt Kandi came to visit, also bearing gifts.  She and Ashlyn kidnapped me from the hospital for a real dinner downtown.  It was nice to have a meal with other people that I love, and so nice to have them here.

 

This cute gift arrived with handcrafted pillowcases and an anonymous note.  We put the new pillowcase on right away.

 

This is where I have been sleeping, er, laying for the past several nights.  Isaac has insomnia now that he is not sedated so we hang out with the night shift.

Extubation has not been all I had hoped for.  For all but a few brief moments, it is as though Isaac is still sedated, only now his eyes are open.  He is less responsive now than he was with the tube in, not even answering yes and no questions.  He just stares blankly.  He refuses to eat or talk, and he cannot sit up or walk.  I change his diaper several times each day.  He doesn't remember much of what happens each day when I talk about it with him and show him pictures.  The staff says that all of this is normal and that all of these things will come as he gets feeling better.  For now, it is really frustrating for me.  I didn't realize it would be like this.

Medically he is doing well.  His lungs are functioning on their own.  His chest tube continues to drain.  On ultrasound there are more pockets of infected fluid in his pleural empyema, so they are determining how to best treat the remaining pockets.

As we have resided in Room 9, I have seen 5 patients come and go in the room next door.  The rooms here are divided by a glass door and a curtain so light and sound travel well.  I have felt envy as the patients next door move so quickly out of the ICU.  Last night as I was getting ready for bed, they withdrew support on the patient next door.  My heart broke for the parents who hunched over their child's bedside and they said their last goodbyes.  I, like so many of you, wished that there was something I could do.  So I did as you have done.  I said a prayer and asked that comfort and angels be sent in this time of desperate need for the grieving family next door.

 

Writing our story has been therapeutic for me.  It gives me a connection to the outside world.  Thank you for your continued support and prayers.



 

PICU Day 5: Surgery Success

 At Time Out for Women this year, one of my favorite presenters, Laurel Christensen Day, challenged us to write down one thing we really, truly fear.  She spoke about conquering our fears with faith.  As I accepted her challenge and tried to write down my fear, nothing immediately came to mind.  As I pondered and listened, I eventually had the courage to write down one thing that I sincerely fear.  I wrote: "I fear trials."

After putting Isaac on the more aggressive sci-fi ventilator and monitoring his progress, the doctors decided it wasn't working as well as they had hoped at clearing out the junk inside his sick, collapsed lung.  The chest tube that was placed soon after we arrived here, however, WAS producing again (after some intense manipulation by our awesome nurse.)  The doctors discussed whether to try and move the chest tube to a spot where it could continue to drain the empyema, or take Isaac in for surgery.  It was determined that he needed to undergo VATS: Video Assisted Thoracic Surgery. 

 They prepped all of his tubes and medications.  I signed all of the forms, and off we went to General Surgery.

 Under normal circumstances, sending my child through these doors would be nerve wracking.  On this day, however, I was looking forward to cleaning the junk out of Isaac's chest and getting him on the right track. 

 I parked in Surgery Waiting and downloaded Sheri Dew's new book about Women and the Priesthood.

 And before I knew it, Isaac was out of surgery and back in Room 9.  The surgeons removed large amount of "jelly-like" infection which was walled off by "rind" that was forming, which they "scraped" off and sent to the lab.  They placed this larger chest tube to continue drainage.

 After surgery it was time to brush teeth, read stories, say prayers, and go to sleep. They also placed Isaac back on a regular ventilator, which is less frightening than the vibration percussion vent that they were using for the past two days. 

With the empyema draining, the hope is that his collapsed lung will have room to expand and begin to function again.  In order to stimulate that lung function, they have reduced sedation, which means that I get to see those beautiful green eyes more often!  Isaac is still under IV sedatives, but he is less in a coma-like state and more in a sleepy, relaxed-like state.  He is semi-responsive and answers some yes-and-no questions.  He even smiled when I told him I was taking this picture this morning.

They are slowly reducing the rate and pressure at which Isaac is ventilated.  If he tolerates the reductions, they will wean him from the ventilator with the goal of extubating him tomorrow.

As I sit at my son's bedside on Day 6 in the ICU, I am finding that there was no need to fear trials after all.  You see, "No pain that we suffer, no trial that we experience is wasted.  It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility...it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire" (Orson F. Whitney in Faith Precedes the Miracle by Spencer W. Kimball (1972), pg 98).  I have felt the reality of Christ's promise that "I will not leave you comfortless; I will come to you" (John 14:18).  Even more reassuring is the knowledge that this peace and comfort is available regardless of the trial I am facing, because I am convinced that there may be even more difficult trials in my future, trials that my be less public than a stay in the ICU with fewer encouraging words and prayers from all those that love us.  Regardless of what we are asked to suffer through, I am learning that when we have faith, we truly have nothing to fear.

PICU Day 4: Failed

 Isaac is very sick.  That is what the doctors say.  When the goal to wean him off ventilation and extubate him failed, it was determined that he would undergo MedaNeb treatments in an effort to open and inflate his left lung.  By 6:00 that night, it was decided that he failed the MedaNeb treatments.  It is always discouraging to hear the word "failed."  A new, more invasive ventilator was started.  This machine uses percussion, vibration, and pressure to break loose the infection inside of the lung.  It is uncomfortable, looks frightening, and sounds like something from a bad 1980's sci-fi film: "Servolator Percussionator Monotron Wave Form Analyzer." Yikes.  There are concerns that such rigorous therapy could be harmful to his relatively healthy right lung, which is why they didn't try this type of ventilation earlier.  (Thanks, Rasch Family, for the super snuggly puppy!!)

 Isaac is still under heavy sedation.  This allows him to be restful and relaxed during the painful and uncomfortable therapy.  Occasionally his eyelids will flutter but he makes no eye contact.  In these rare moments he tries to lift his hand to his face, but his hands are tied to the bed so he doesn't pull out any of the 147 tubes attached to his body.  The other 23.8 hours throughout each day he is completely non-responsive.  I talk to him and tell him what is going on.  I read to him and tell him about the get well cards on his wall.  The professionals working with him introduce themselves and explain what they are doing.  He doesn't respond to any of it.  His sick little body lays in bed bouncing mechanically from the machines he is attached to.

 I look closely at the xrays they take each day as the nurses explain them to me.  You can see a feeding tube, a chest tube, and a PICC line.  The xrays show that the new ventilator seems to be helping.  The top xrays show more shadows on the left side than the bottom image, which was taken earlier.  Shadows and dark space indicate air, which is good.

When you watch the machine breathe for Isaac, it is easy to see that his left lung is non functional.  The right side of his chest rises and falls with each mechanical breath.  The left side remains motionless.  The doctor explained that when there is a pleural empyema this severe, the bacteria is difficult to reach.  It is as though the disease walls itself off.  The various procedures and medications they are trying are methods to break down these walls.  The empyema is outside of the left lung, so the treatment measures for the empyema are in addition to those implemented to treat the pneumonia inside the lung.

 As for me, I had a sweet visit from one of very best friends yesterday.  She brought me a skirt in case I get the chance to ride TRAX down to the temple.  She brought me homemade soup and snacks.  She brought a letter of love and a Christmas card for Isaac's wall.  She brought her own 4-year-old whom Isaac was in preschool with.  When it was time for them to go, I asked little Ally for a hug.  When that little girl wrapped her arms around my neck, it was the first time I really broke down and sobbed.  I couldn't hold it back.  Feeling that tiny squeeze and that little body within my own arms was more than I was prepared for. 

By some miracle (I'm sure a result of all the prayers being offered in our behalf,) I was assigned a sleep room again last night.  For some reason, I couldn't sleep.  I tried and tried.  I even used all the relaxation and breathing techniques I learned in natural childbirth.  No luck.  So I came back down to Isaac's room where his nurse helped me lay next to him for the first time.  I untied his arm restraints and just held his hand and felt his body next to mine.  It felt so good to be so close to him. 

Today is Friday.  This has been the longest week of my entire life.  As long as it seems to be working, Isaac will remain on the sci-fi ventilator for a few days.  After that, he will move to a regular ventilator for a few days.  When he is well enough to breathe on his own, they will take him off the ventilator and prepare to extubate him and move him from the Pediatric Intensive Care Unit to the Medical Floor, where he will continue treatment until he is well enough to go home.  Until then, I am taking one day at a time.  I try not to worry about the things I can not control.  I try to do as many of the daily routine things that I can here (which unfortunately does not include Zumba...dang!)  I shower and get ready each morning.  Isaac and I have morning scripture study together.  We have bedtime stories and prayers.  I try to focus on the positive things and the tiny miracles and blessings, of which there have been many.  I know my son will get better.  I know we will make it through this.

 

PICU Day 3: Ups and Downs

 

 After I went home Tuesday night, I brought back lots of letters of love for Isaac.  I read them to him and then hung them on his wall.  It looks a little happier here in room 9 now.  Isaac can get mail here!  His address is:
Isaac Dansie Room 2309
c/o PCMC
100 Mario Capecchi Drive
Salt Lake City UT 84113

 They reduced sedation a little bit to see if Isaac could try to breath with the help of the ventilator.  He has times now when he is a little bit more alert.  His eyes will open part way and he will turn his head slowly.  This morning we had scripture study together.

After that, it was time to brush teeth.

Yesterday was an eventful day for us. 

The forward for the Utah Grizzlies stopped by for a visit.

Isaac was the winner of Wednesday Bingo and this super cool frog was his prize.  Sidenote:  I took this picture to send to Daddy because it was one of the few times Isaac's eyes were open.  Daddy left Tuesday to start working in Nevada and misses this guy like crazy.

Yesterday even after visits from hockey stars and Bingo prizes, I was feeling kind of blue.  As soon as I realized that my spirits were down and cloudy, I decided to leave Room 9 for a little breather.  I walked down and sat in the cafeteria.  I saw people there who are here with children that are never going to get better.  I saw people who will leave here without their child.  I saw parents that have been here before and who know they will be here again soon.  As I made my way back to Room 9, I was so thankful that I was turning to go into the Pediatric Intensive Care Unit rather than the Neurotrauma Unit.  By the time I returned to Room 9, I felt overwhelmingly blessed instead of blue.  Shortly after, my sister called to say that one of her friends was in the lobby with a snack for me.  I went down to find the girl in the "blue sweater."  This stranger whom I had never seen before, and will likely never see again, handed me two sacks filled with all sorts of groceries and snacks.  I said, "I don't feel like I can take this from you.  I don't even know you."  With tears in her eyes, she responded, "I know, but it's Christmastime, and we wanted to help."  I was reminded of all the times that I have dismissed the prompting to help, or call, or serve, or go visit because I didn't really know them, or because I wouldn't know what to say, or because I didn't really have time.  I was so thankful in that moment that the girl in the blue sweater didn't use any of the excuses that I had become so familiar with.

Last night I was assigned a Parent Sleep Room (yay! another blessing!) so after I read Isaac a bedtime story and said prayers, I was able to find a quiet, dark (freezing cold) place to sleep. 

Yesterday they started to slowly turn the ventilator down slowly to try to wean Isaac off of it, the goal being to extubate him today.  This morning, however, his wean was diagnosed as "failed."  His little sick lungs are not strong enough yet to try and breathe on their own.  Cancel extubation.  Instead they are implementing some new ventilating methods to try and clear out and strengthen his lungs.  His feeding tube made its way out of his intestine where it is supposed to be, so they stopped all feeding until further assessment.  They took out his catheter and are monitoring him closely to make sure he will still use the bathroom.  It was decided to try another medication to treat his high fevers and help with the pain of the chest tube and breathing tube.  His chest tube routinely clogs and stops draining which means they are constantly assessing what to do with it.  Because he will be on long-term IV antibiotics, they will insert a PICC line today. 

This morning Isaac and I studied in 2 Nephi chapters 10 and 11.  In these chapters, the prophet Jacob is recounting the land covenant and says, "let us remember him, and lay aside our sins, and not hang down our heads..." Today these were words I needed to hear.  Jacob goes on to explain that even though they had been driven from Jerusalem, they had been led to a better place for "great are the promises of the Lord" (2 Nephi 10:20-21.)  I told Isaac that this part reminded me of us.  We couldn't stay at home right now, but God prepared a place for us to come where he could get the treatment he needed to be healed. 

Regarding spiritual growth, I am beginning to see that I could not remain in the place I was before this experience.  I trust that even though I have been driven from the place I was comfortable, God is leading me to a better place, and place He has prepared where I can be a better mother, a better servant, a better disciple, and more like my Savior.  Let me remember Him, lay aside my sins, and not hang down my head, for great are the promises of the Lord. 

PICU Day 2: Tiny Miracles and Baby Steps

 

 Thankfully I didn't have to sleep here again on Night 2.  Another parent with another sick child took this room while I drove home and spent the night with my other children.  Isaac is still under heavy sedation so I left after visiting with the doctors and giving him lots of kisses.  During my conversation with God on my way home, I was reminded again and again of all the tiny miracles we have experienced so far in this journey.  I feel entirely overwhelmed with gratitude as I consider both the love and support our family is receiving, and the superior care Isaac is receiving.

 On Day 2 the Child Life Specialist, Joy, helped decorate Isaac's room with this splash of color and smiles.

 The nurses patiently explain all of the tubes in Isaac's body and what their purpose is.  They are so good to answer all of my questions, and they are so careful with Isaac.

 The catheter they placed wasn't producing much, so additional medication was given to help him void more fluid out of his system.  When the feeding tube didn't go exactly where they had hoped, they were considering additional procedures, but after some time it progressed into the intestine as they had hoped.  Now Isaac is being fed!  He is still running a high fever and can now receive his fever reducer through his feeding tube.  It was decided to introduce another medication through his chest tube to try to stimulate more drainage, which is also working. 

 They reduced the amount of pressure created by the ventilator to see if his lungs will try to make up the difference on their own.  The doctors are careful about the words they choose to describe his progress.  They say things like, "as expected," and "baby steps" and "slow but forward."  I consider all of these things good news.  I have yet to hear things like, "set-backs," or "negative side-effects" or "unexpected." 

It is easy to forget it is Christmastime here in the PICU, but I am reminded when I go to the lobby or the cafeteria.  In a timeless dichotomy, I am reminded both of the chaos and the comforts of Christmas.  Because we were planning to move into our new home on December 20, we had decided as a family not to decorate our apartment for the Christmas season.  Instead we started packing our things and looking forward to putting up the Christmas tree right before Christmas in our new house.  As I see the Christmas decorations around the hospital I am reminded that my children at home have no Christmas tree, no stockings, no wrapped gifts.  Even as I talked with them last night they are holding on to the hope of celebrating Christmas at the new house and want our Christmas tree there.  As I think of the Christmas season that exists outside of PICU Room 9, I am in awe at the majesty and simplicity of the birth of Jesus Christ, the Savior of the world.  With the help of my sister, I introduced a little Christmas into Isaac's room by bringing our Christmas cards here with me to prepare for mailing. (Christmas cards are one of my VERY favorite things about Christmas.)

Just as I was preparing to leave Day 2, our nurse opened the blinds and pointed out the beauty of the sunset.  I was reminded that amid the sorrows and trials that we all face every day, there is always beauty to be found if we are willing to look for it.  I watched the sun set and told Isaac about the colors in the sky.  I said goodbye to Day 2 and looked forward to the progress we would see with a new day ahead.

Isaac's Intensive Care

 This picture was taken back before we chopped the mullet off, but this was a typical morning for our little RockStar.  Isaac wanders out of his room while the rest of us are sitting down for breakfast.  The crawls up onto my lap and wraps his arms around my neck for 'morning hugs,' which is one of my favorite parts of the entire day.

Last Wednesday I was getting ready to take Titus to the doctor for his one-year well baby check and Jeff was getting Isaac ready for preschool when he noticed he had a fever.  In a quick change of plans, I called the pediatrician and scheduled an appointment for Isaac as well.  Since his physical exam checked out, it was determined he likely had a strain of the flu virus and would run a fever and not feel well for the next 3-5 days.  It turned out that he...ran a fever and did not feel well for the next 3-5 days.  On Sunday, day 5, we told him that we would take him back to the doctor the next day.  He kept saying, "I just want to get better!"

 At 3:00 that morning he came in our bedroom complaining of bad dreams.  I went and laid with him in his bed and noticed that his breathing was getting worse.  I tried to calm him down but if I am honest with myself, I knew that he was really, really sick.  When I asked him if he wanted to take a warm bath to help him relax, he said yes, but when I helped him take his pajamas off, I noticed that something was really wrong.  He couldn't stand up straight and his abdomen was shifted off to one side.  I woke Jeff up, asked him to give Isaac a blessing, and then took him to the Emergency Room.

After Jeff's friends did some CT scans and some x-rays, the doctor told us that Isaac had severe pneumonia and that he would need to be transferred to Primary Children's Medical Center.  I went home to pack a bag while they sedated and intubated Isaac and waited for Life Flight to arrive.  Jeff's mom, who works at the school, had a feeling that morning as she woke up that she should take the day off of work.  When I went home to pack I was able to leave Titus with her without having to worry or make any arrangements.  I was so thankful she followed a quiet, simple prompting.

It seemed like it took forever for them to stabilize Isaac and prepare him for Life Flight.  I was so thankful for the professionals that were so careful with him.  Watching them work on him was one of the most surreal experiences I have ever had.  This was not my child.  We were not in the emergency room.  That helicopter was not here for him.  We were not going to Primary Children's.  He was not this sick.

 

Initially we were told that one parent could accompany Isaac on the flight, but then were told he would have to go alone.  I was relieved that I wouldn't have to make the drive all the way to Salt Lake City alone, but that Jeff would be coming with me.  My sister had been trying to contact me as soon as she heard that Isaac was going to be Life Flighted, but I didn't answer my phone.  Soon I got a text that said simply, "I am on my way to your house."  She lives 170 miles away and dropped everything to come without being asked, just "I'm on my way." I later found out my other sister was coming with her.

When we arrived at Primary Children's, Isaac has tubes, medications, monitors, and machines attached to every part of his body.  They explained that he was suffering from a pleural empyema, which is infected fluid outside of the infected lung.  The pneumonia had consolidated in his left lung rendering it useless, so his right lung was working overtime.  They started him on antibiotics and continued sedation.

 They surgically placed a chest tube under his arm to drain the infected fluid next to his lung.  It was the fluid that was crowding his lungs and pushing his body out of alignment causing the midline shift that I noticed when I undressed him.

As soon as the chest tube was placed and sutured, TONS of infected fluid drained from his body.

 

For now my life exists within the Pediatric Intensive Care Unit.  I listen to doctors, residents, fellows, supervisors, infectious disease specialists, researchers, respiratory therapists, social workers, family life specialists, lab technicians, nurses, and radiographers.  I ask questions about my little man.  I talk to him through his muting sedation.  I tell him who calls, who is praying for him, and what is going on around him.  I tickle his tummy and rub his hair.  I told him I would be writing his story today so everyone that is asking could know how he is doing.

Isaac will remain under sedation for the next few days.  The chest tube they placed isn't draining anymore so they are deciding whether or not to move it.  They placed a catheter last night and will place a feeding tube today. He will start a new antibiotic today.  If he responds well to treatment then he should be discharged in 7-10 days.  If he experiences any complications his stay will be longer.

 We live in room 9.  Each day I apply for one of the parent sleep rooms that are assigned out on a nightly basis.  Each morning I shower in one of the bathrooms in the parent waiting room using baby shampoo and the soap from the wall mount soap dispenser.  I try to style my hair without a blowdryer.  I try to do my make up without a mirror.  I try to find something inexpensive to eat in the cafeteria, but I don't really feel hungry.

 

 

 I spend my time answering phone calls and text messages, and praying.  In a hospital room in the Pediatric Intensive Care Unit, priorities become very clear.  There are very few things in this life that really matter.  My family.  My relationships.  My testimony.  My Savior. 

I am overwhelmed by the outpouring of love and support coming from all directions.  The staff here is incredible.  My family has been outstanding.  People I know and people I don't know well are all offering to help in any way they can.  Despite the severity of his situation (the doctors keep reminding me of how very sick he is) I don't feel afraid.  I feel comfort and I feel peace.  I can feel the power of all the prayers that are being offered on our behalf.  I feel my Savior's love, in all the world around me.  His Spirit warms my soul in everything I see.