New Year

I can't look forward to my midnight kiss this New Year because Jeff is working out of state, something he started doing the week Isaac was Life Flighted to Primary Children's.  Instead I am spending New Year's Eve in quiet contemplation.  Does that sound smart? Good, because really it is just boring.

We went in for followup labs last Thursday, and yesterday we went back to Primary Children's for exams, xrays, and more labs.  Isaac was in really good spirits, but he was utterly exhausted after several hours and all we had to do there.  I was hoping to squeeze in a few Christmas returns, but Isaac kept saying, "I just want to go home and lay down." 

Isaac is making good progress, but he is still very sick.  Most of his labs have normalized, but some levels are still elevated.  His xrays look significantly better, but still show pneumonia in his left lung.  He is throwing up and having diarrhea and has no energy at all.  He tries to climb up the stairs of our home, but sits down on the fourth one and calls for me to carry him the rest of the way to the top.  His skin is grayish, his eyes are sunken, he looks severely malnourished. He can't sit up straight.

 And through it all, he is a very happy kid.  He is always smiling.  He never complains.  When people ask how he is doing or how he is feeling, he responds, "I am getting stronger."  He is teaching me how it is done.

 

 In between doctor visits, administering medication, and cleaning up throw up, we are working our way through mountains of boxes.  It seems we have WAY too much stuff.

 Isaac, whom we have nicknamed "Bones" is finding time to play with all of the toys he got while he was in the hospital (who needed Christmas?)

 Daisy says it is not fair that Isaac and Titus don't have to help unpack.  One thing we have learned through all of this is that life is certainly not fair.  But who's idea was that anyway?  "Fair" was never on the negotiation table to begin with.  Life is wonderful and amazing and hard and beautiful and difficult and unbelievable, but it is not fair.  I'm ok with that.

Even if he is not unpacking boxes, Titus certainly thinks he is helping, and he never lets any of us get bored for a single second.

Isaac and I watched the sun set tonight and it occurred to me that the sun was setting on 2013.  Tomorrow a new year will dawn.  I had a moment on Sunday to think about what I want my 2014 to look like.  There will only be 365 days.  There will only be 24 hours in each of those days.  I want to ensure that I spend those precious, limited, hours doing things that really matter.  In composing my Daily To Do List, this is what I wrote down:
1. Talk with God
2. Study my scriptures
3. Exercise
4. Play with my kids
5. Serve Jeff
The challenge, of course, is going to be keeping those things at the top of my to do list, ensuring that they remain the essentials when the laundry is piling up and the PTA is calling and the bills need to be paid and I need to check my email and my visiting teaching still isn't done.  But it is only 5 little things.  Five things that must be done every single day no matter what.  The perspective I gained as I sat at Isaac's bedside in the ICU day after long day helped me understand that there are very few things that really matter in this life.  I am committed to spending my limited, precious time doing things that matter. 

Happy (healthy) New Year.

Recovery

 It turns out that Isaac's trouble with his physical health caused me a little trouble with my mental health, which is to be expected, right?  Understanding that, recovery has been taking place for both of us.  Recovery is slow.

Because our family moved while we were in the hospital, in a lot of ways it doesn't feel like we came home.  It sort of feels like they just moved us to a different hospital room.  Until yesterday I was still living out of my hospital bag because we didn't have a washer and dryer (our dryer went out two days before Isaac was Life Flighted) and I didn't know which box to find my stuff in anyway. 

My baby started walking while I was gone.  It feels like I'm the one who has been in a coma.  It feels like I was gone much longer than 14 days because so much changed in those few weeks.  Doing the normal everyday things has helped me heal.  Like bathing my baby for the first time in too long.  I couldn't get enough of his soft slippery skin and his chubby baby body.

 Spending Christmas as a family was a huge boost to my recovery...and Isaac's.  My Daisy was so strong while Isaac and I were away.  I know she was supported by angels, both seen and unseen, as a result of all of the prayers offered for our family.

 Isaac has jumped right back into normal life.  It's as though he hasn't even noticed we moved to a new house.  As long as he has his brothers and sister, he is good to go.  I wouldn't want it any other way. 

 Levi, my little scientist, got a tortoise for Christmas.  He couldn't have been happier.

 I came home to a sick Titus.  He has a horrific rash on both ends, and diarrhea to boot.  The day after Christmas we were off to the doctor again for Isaac's followup labs and to see what we could do for Titus.  When I wanted to be home unpacking, I was sitting in a doctor's office again.  When we pulled into the parking lot before his appointment, Isaac said, "I want to go home."  When we got inside it was as though he turned off his feelings again.  He didn't care, flinch, or cry when they poked him, listened to him, and inspected him. 

 As soon as we left the doctor's office, my little Ninja Turtle was back in action.  Everyday he has been getting a little stronger.  Every day when he gets tired so easily, has pale skin and dark circles under his eyes, flinches when he bumps one of his incision sites, or says he doesn't feel so good, I am reminded how far we still have to go.

Isaac is still smiling, though.  And because he is, so am I.  Sometimes I start to make a mental list of all the things that have gone wrong (dryer dying is just the start...) but I find my time is much better spent listing all the things that are going right.  Bad things happen to good people.  But great things happen to ordinary people.  As I move through the mountains of boxes trying to unpack and put my life back together, I am reminded of all the people who packed and moved the boxes.  Great things.  As I lie next to Isaac and watch him breathe, I think of the miracles of modern medicine.  Great things.  As I pray in gratitude to my Heavenly Father, I feel His familiar comfort and sustaining.  Great things. 

We are recovering.

This is Christmas

This year I haven't been to a single Christmas party.  I haven't wrapped a single Christmas gift.  I haven't baked any Christmas goodies.  I haven't burned any Christmas candles.  This year I haven't delivered any neighbor gifts.  I haven't attended any Christmas concerts.  I haven't hung any stockings (hopefully we can find them in one of the boxes tonight!) I haven't even seen my Josh Groban Christmas CD! 

As I prepare to join my family for the Christmas Eve festivities in just a few minutes, I find it ironic that I feel the Christmas spirit so profoundly in the absence of all of the things that I usually associate with Christmas. 

Christmas is always a magical time of year, but this year we witnesses an unforgettable Christmas miracle.  To have our Isaac home for Christmas is more than we dared hope for.  Having my family together and home for Christmas is evidence of a loving and merciful and personal God who hears and answers prayers.  Having my family together and home for Christmas makes me eternally thankful for a God who loves us enough to send His only Son to be our Savior. 

Since I heard it sung at the hospital on Sunday, I have thought of the third verse to "Away in a Manger" as a prayer.  As we move toward recovery, and pray for God's continued blessings of protection and healing, these words are so close to my heart.  I have come to know that some of the difficult things we face in this life help to fit us for the kingdom of heaven.  I have felt the real and literal love of my Redeemer.  I have felt, and been the beneficiary of others who have felt, the true meaning of Christmas this year.

"Be near me, Lord Jesus, I ask thee to stay
close by me forever and love me I pray.
Bless all the dear children in thy tender care
and fit us for heaven to live with thee there."

Home for Christmas

 There is really no such thing as sleep at a hospital, and all through Saturday night I was thinking how thankful I was that the next day was Sunday, the Sabbath day.  I thought about the privilege of taking the Sacrament and how I could look forward to the strength I would gain by participating in that ordinance.  At 6:00 in the morning when the doctor stopped by to discuss the plan for the day, she indicated that Isaac would have a chest x-ray and if things were progressing in the right direction, he may be able to get his chest tube out that day.  Hooray!

Right before we headed off to x-ray, the surgical team stopped by and mentioned that the tube needed to be "bone dry" before they felt safe removing it, and it had drained a little more infected fluid throughout the night.  I felt torn because I certainly did not want them to leave infected fluid inside of Isaac, but I really wanted them to take the tube out too.

 When we got back from xray, our AMAZING nurse, Rosa, gave Isaac his first bed bath so he could get ready for church.  He wasn't too sure about having a bath in bed.

 Isaac and I talked about the Nativity that Grandma Holyoak sent, and then we went to church.  There is a branch at Primary Children's that meets every Sunday.  Last Sunday we couldn't make it to the meeting, so the elders brought the Sacrament to our room in the ICU.  This Sunday, we were looking forward to going to the meeting.  As I wheeled Isaac into Sacrament meeting and sat down next to him, I was overcome with humility.  We were surrounded by people all dealing with incredibly difficult situation.  But we were surrounded by people who also knew the source of peace amid trial.  The power of the Holy Ghost was undeniable throughout the meeting. 

 As soon as we got back from church, the surgical team called and said the chest tube could come out.  Hooray!  They said they would need to monitor him for 24-48 hours and do additional xrays to make sure everything went well, and then we could go home.  This meant we would be home in time for Christmas.  I was elated!

 The Primary came and taught Isaac's Primary lesson soon after his chest tube was removed.  Then, we had a whole host of visitors.  Our family from Green River and California came to cheer Isaac up.  We were talking and laughing when the nurse came in with the best news of my entire life. 

 She said that the Surgical Team, the Infectious Disease Team, and the Pediatric Team all consulted about Isaac's case and determined that they would perform another xray at 4:00.  If things had not worsened with the removal of the chest tube, they said Isaac could be dismissed THAT DAY!  We walked down to the end of the hall to celebrate.  It was the first time Isaac was not attached to any machines and he was thrilled.  I dialed Jeff and handed the phone to Isaac.  "It's daddy," I said.  "Tell him that you get to come home today."  This is what I heard, "Hi dad!"  "I'm not hooked to anything!" and then he giggled.  So did I.

 The nurse came in and removed Isaac's central catheter (which initially they told me we would have to go home with...hallelujah that it came out at the hospital) and then we packed up our room and prepared to leave.  Neither of us could stop smiling.

 We had quite the load.  It seemed so strange that our turn to leave had come so suddenly.  I had watched other families come and go, and I couldn't quite wrap my head around the fact that it was us this time.

 Our fabulous nurse, Rosa, helped us out.  Isaac and I both hugged her goodbye.

 Isaac and I met our family at In-N-Out Burger, one of Isaac's favorites.  As he watched out the window for them to arrive, I couldn't take my eyes off of him, and I just smiled to think of all of the many miracles that we had been witness too.  We were on our way home!

 Ever since he started talking again, Isaac has not stopped talking about Titus.  He missed his little brother so much, and could not wait to see him again.

I came home to this (haha) and a million other boxes that are waiting to be unpacked...

and to this, and a million other things that made us smile.  I couldn't believe how much work had been done on our house to make it so we could move in.  I couldn't believe all of our stuff had been packed up and moved for us!  The Christmas tree was the most beautiful we have ever had (by far) and made our homecoming so much sweeter.

 Isaac just wanted to be with his siblings.

 In all honesty, the new house didn't quite feel like coming home to either of us.  Two weeks is a long time to be gone.  Adjusting to our new home will take us a little while, because it feels like we didn't have closure leaving our old house.  But if the last two weeks are any indication of how resilient Isaac is, I have nothing to worry about.

 

 Seeing all of my kids playing around the table (our dining table is in the middle of a refinishing project) this morning was more than I could have hoped for even 24 hours earlier.  I believe in miracles.  I believe in the power of prayer.  Isaac is home for Christmas.

 

A Christmas Tree

 The day Isaac was life flighted to Primary Children's, we were told that he would likely be here for 7-10 days.  Today was day 13.  When we wake up in the morning we will have been here for two weeks.  In the irony of life, there was more scheduled to happen in the past two weeks of our lives than any other two week period in the entire year.  Because of an army of incredibly kind and selfless volunteers comprised of our friends, family, and ward members, all of the finishing touches on our house are being completed.  The carpet was laid yesterday, and without me there to help or direct, all of our things were packed up and hauled to our new house today.  My friends even set up a Christmas tree for us.  (When Jeff told Isaac that there was a Christmas tree at our new house, he was ecstatic.)

Last night my parents came to visit!  It was so great to see them.  At times like these, a girl really needs her mama, I don't care how old you are.  They came bearing gifts from friends and family in St. George and Cedar City, and Isaac giggled the whole time he was opening them. 

My dad had intense reconstructive foot surgery a few weeks ago, so he and Isaac both got to ride in wheelchairs around the hospital.  Isaac said, "It is not fun being sick, but it is fun riding in that big stroller."

As soon as we woke up this morning, we noticed the construction workers outside were decorating a Christmas tree for us!

When I was in the bathroom brushing my teeth when Isaac asked, "Mom, what are we going to do today?"  His simple question made my heart smile.  He only started initiating conversation and asking questions yesterday, and even then it was only for a short period of time before he became quiet again.  We started today with him asking me a question.  It also made me smile because this is what we do every day.  After we get the big kids off to school, Isaac and I plan our day.  I tell him what is on the calendar and what we need to accomplish every day, so his question reminded me so much of our normal daily routine, of real life outside of the hospital.  So Isaac and I made a plan for the day:
1. Do his 'morning jobs' (a list of things he does every morning at home.)
2. Go try out the playroom
3. Open the next day on his Lego Advent Calendar.
4. Do our laundry (something he helps me with at home almost every day.)

After he brushed his teeth, got dressed, ate breakfast and combed his hair (he said "We forgot to make my bed") then we headed to the play room.  I was so looking forward to Isaac being able to be a little like a normal kid and play with toys and other kids.  I was sorely disappointed.

   There weren't very many other kids at the playroom, and, hard as I tried, I didn't seem to make a very good playmate.  Isaac can't walk independently yet, and his chest tube and accompanying drain limit his mobility.  His PICC line coming out near his elbow (which he calls his "cast") limits his use of his right arm.  He tried to play for a while, but ended up more comfortable at the craft table.

 He made this Santa ornament and crafted a few other things before it was time to go back to his room. (Side note: This afternoon when we were talking, Isaac said, "Mom I don't have any bad dreams when I sleep at this hospital." Tender mercy.)

 He was more comfortable back in his bed and was excited to open the next day on his Lego Calendar.  We played with Legos for a while, and he was happy and talkative.  His fine motor skills are improving every day.

 When it was time for Grandpa and Grandma to leave today, Isaac smiled and seemed mostly like his normal self.  I started to cry when my mom hugged me goodbye, and Isaac teared up a little too.

 When we feel sad or lonely, we just read the letters on our Well Wishes Wall and it cheers us up again.  All of the nurses comment on how loved Isaac must feel with all of the happy things in his room.

Instead of sitting around feeling sad, we did the last thing on our list: laundry.  We don't have a laundry basket here, so Isaac had to carry all of our clean clothes back to our room after we got them out of the dryer.  He said they were too hot!

 After lunch and laundry we colored pictures and listened to Christmas music.  That made us feel happy too.  I try not to think too much about all of the Christmas traditions our family is missing this year.  Instead I focus on all the miracles that we have witnessed this Christmas, and how profoundly the love of the Savior has been made manifest in our lives during this beautiful celebration of His birth.  When I think of the abundance of love and service that our family has received, I think of the meek souls who have chosen to receive Him, and how it is through the power of the Atonement of Jesus Christ that our human hearts are softened, changed, and blessed.
"How silently, how silently the wondrous gift is giv'n! 
So God imparts to human hearts the blessings of his heav'n. 
No ear may hear his coming, but in this world of sin,
where meek souls will receive him, still the dear Christ enters in"
 (Oh Little Town of Bethlehem, verse 3).

 

 

 

Day 12

You know when your kids are really sick, or you are dealing with something really hard, or you have a big decision coming up and you find yourself in a constant state of prayer?  It is almost like your prayers don't really begin or end, but you are constantly offering your heart up to God pleading for help.  I remember those sleepless nights with sick babies where somewhere between consciousness and sleep all night long I was either counting respirations or praying or both. 

Today, Isaac prayed.

After the remarkable progress we had yesterday, I wasn't really sure what to expect for today.  This morning Isaac was all chill during his vital checks.

 The physical therapist came to work with him on some strength and gross motor skills.  He has no problem sitting on his own now.  He still has a difficult time with balance when he stands, and he can't walk without assistance.  The therapist said he is making good progress though, and I can tell he gets stronger every day.

 Since Isaac just made his emotional reappearance yesterday, today was the first day he really engaged in play.  And don't you worry, the experts here at Primary's had all sorts of tricks up their sleeves...like bringing real snow into his room complete with a snowman kit.  He couldn't have been more excited.

 Today when the animal volunteers came he pet the dog and talked to the volunteer instead of staring off into space like he did last time they brought a dog in.  Isaac was talkative for about two hours this afternoon.  He was initiating conversation rather than just responding to questions and speaking in complete sentences rather than one word answers.  I wanted to pick his brain without pushing too hard.  I got the impression that Isaac thinks we live here.  He would say things like, "Not at this house, but at the house where we used to live." He doesn't know where his siblings are.  He told one of the nurses today, "I think they are in California or maybe Cedar City."  After Jeff spent the night with him here, he told me that he thinks Isaac may feel like he is being punished.  As we talked this afternoon, he was very apologetic and thought that he was in trouble.  I can't even imagine how confusing his little world must be right now.

 Since Isaac was in good spirits this afternoon, our new friend Kali timed her visit perfectly.  Kali explained that after reading our story, she was prompted to reach out and help in some way.  She wondered about children who are here at the hospital that may not have as much support and expressions of love as Isaac does.  Rather than exchanging Christmas gifts with her best friend, the two of them came up with a plan and asked the hospital to help them find a patient here that could really use some extra help.  Today she came to the hospital to deliver their gifts, and brought some gifts by our room for Isaac and his siblings as well.  The tears ran down my face as she told us her story.  As I make observations throughout this hospital, it is very clear that some patients receive more gifts and support and expressions of love than others.  It is hard for me to imagine how we would be able to cope without the love and selfless support of our ward, extended family, friends, co workers, and neighbors.  I was so thankful that Kali shared her story with us.  As she described how much fun it was for them to go shopping for their patient, I thought of the immense blessings that accompany Christlike service.  Any time we reach out with charity in our hearts, we feel a greater portion of Christ's love for us. 

 Today's medical care included more poking, prodding, and pain.  They are weaning Isaac from the heavy narcotics he has been on, which means he is experience some withdrawal and some pain.  When he turns onto his side, curls up in pain, and starts to cry, I feel so helpless.  He has been so brave, and he has yet to complain at all.

Isaac's inflammation levels are still high, and his liver function is abnormal.  Considering the severity of his case, they expect the inflammation levels to take a little longer to normalize.  They are adjusting his antibiotics to try to stabilize his liver function.  His chest tube continues to drain infected fluid.  This is good because we need to get all the fluid out.  This is bad because the chest tube will remain in his side (and we will remain here) until it stops draining.  All of this means that they draw regular labs, inject various medications, take a variety of images, and remain very vague about potential discharge.

Isaac ordered a PB&J for dinner. Before it was time to eat, I said folded my arms and said, "Do you want to say it?"  and he nodded his head.  I closed my eyes and bowed my head and waited.  In his soft, quiet, semi-scratchy voice, Isaac said, "Heavenly Father, help us be safe.  Bless I can not be sick anymore.  Bless the food.  Jesus Christ, Amen."  And I cried.

 I just stare at him as I watch him eat and breathe.  I am in awe at the progress he has made in the time we have been here.  I can't get enough of his smile.  And I can't get enough of prayer.  Some of my favorite things about prayer in the scriptures are actually in the Bible Dictionary.  It says, "Prayer is the act by which the will of the Father and the will of the child are brought into correspondence with one another" (BD pg 753).  I think of the times in my life when my Father in Heaven made His will known unto me, and the times when my will was brought into alignment with His as some of the most sacred experiences of my life.  It continues, "Blessings require some work and effort on our part before we can obtain them.  Prayer is a form of work" (BD pg 753).  My thoughts are turned to so many of you that have put forth the effort to include us in your prayers.  I know that prayers have been heard and answered not only because I see the progress that Isaac is making, but because I feel the sustaining and uplifting power of prayer with me every single day.  I pray that God blesses each of you for your faith and prayers in our behalf.  "Oh, how praying rests the weary.  Prayer can change the night to day.  So, when life gets dark and dreary, don't forget to pray."

Welcome Back Isaac

 I think Isaac's room is the happiest room in the Unit.  Between the Well Wishes Wall, the Toy Shelf, and the lit up Christmas tree, there is happiness every where you look.  The medical staff all comment on his happy room when they come in.

All of this happiness is not the result of anything I have done.  Rather, it is evidence of the immense support that we feel from all of our friends and family members.  Your love is literally surrounding us here.

Yesterday we had a major breakthrough:  Isaac had real phone conversations with his dad.  He refused to speak to me or anyone else.  He would ignore everyone that entered his room.  He would not smile, nod, nothing.  But then Jeff called.  I said, "It's daddy.  Say 'Hey dad,'" and then I held the phone up to his ear.  And just as though everything were normal, Isaac said, "Hey dad!"  I, of course, started crying again.  After Jeff and Isaac talked for a minute, I put the phone back to my ear and Jeff asked, "Where did that come from?"  I don't know where it came from, but I was willing to take it.  I knew then that Isaac was really in there somewhere. 

 Later, it happened again.  It was as though the phone was a safe place because he didn't have to look at anyone.  His dad is a safe person because he isn't associated with everything here at the hospital.  Not every time, but most of the time when Jeff would call, Isaac would talk to him.  As soon as they hung up, Isaac was gone again.  Refused to speak.  Refused to smile.  Refused to respond. 

After his chest tube placement yesterday, he had an incredibly hard time getting comfortable.  He would roll around and around tangling all of his leads, monitors, and tubes in a huge mess.  We were both so frustrated and could not sleep.  I ended up on the foot of his bed holding his feet while his arms were tied to the bed.  Not my most pleasant mothering moment.

 With a new day comes new hope. This morning I got out Isaac's Lego Advent Calendar (thanks Grandma!!) like I do every morning.  Only today he showed some interest in it.  His fine motor skills are still pretty shaky, but he tried to put some things together and was interested in opening the little boxes.

Since he was constantly ripping it off, and they had been weaning him from oxygen support, I asked the nurses if we could start room air trials.  They turned his oxygen off early this morning, and he did great.  You can see how effective his nasal cannula was at this point in the photo.  We were thrilled to have one less tube to worry about

 Soon we were off on a field trip to another procedure.  There was some concern that Isaac's minor heart murmur that he has had for years might be problematic, so he underwent an echocardiogram.

 Another scan, another procedure, another strange room, another scary machine, another stranger talking to him.

When we got back from the echo, Isaac was once again pulling at all of his tubes and monitors.  We put the restraints back on.  His feeding tube started beeping so I untied him from the bed to straighten out the tube.  When it kept beeping I stepped out of the room to tell the nurse.  Before I knew it, Isaac ripped the feeding tube out.  And then, as if someone had waved a magic wand, Isaac was back.  He started smiling.  Then he started giggling.  And then, he spoke.

 He told me he was hungry so I gave him some apple juice and goldfish crackers, which he willingly ate.  I could hardly believe what was happening.  It was as though we had been working on letters A and B for two full days and then we skipped all the way to M in 10 minutes.  I told him how handsome he looked without all those tubes and monitors on his face and he wanted to see.  I used the camera on my phone as a mirror and he just kept looking at himself and smiling.  So did I.

 When the nurse came back in to reinsert the feeding tube, we stepped out into the hall.  I begged her to call the physician and ask if we could please give him a chance to eat.  I knew that if we held him down and shoved that tube back inside of him, he would retreat again and be gone.  I knew that the doctors were worried about his stomach being able to handle a normal diet after having not eaten for 11 days.  I knew that they were concerned about nutrition and caloric intake since he had been on mandatory fasting for so many procedures.  But I also knew that inside that room was the kid I had been waiting for all of this time, and I didn't want the feeding tube to change that.

The doctors said yes, and let us give it a try. 

 Well we didn't have to try very hard.  Isaac was ready to eat and get better.  He had no problem eating and drinking, and smiling and laughing.  He seemed almost normal when his siblings and cousins arrived for a visit tonight.  He kept saying, "Titus!"

 We took Isaac down to the cafeteria for the first time so we could all eat together.  He loved it.  He was so adorable as he interacted with the kids and sat up all happy in his wheelchair.

 Isaac couldn't stop smiling throughout their visit.

Today has been the best day we have had in the hospital up to this point.  Isaac still has a long way to go.  His chest tube is still draining.  His inflammation levels are still significantly high.  He still has difficulty walking.  He is still being followed closely by the surgical team, the infectious disease team, and the attending MD team on the floor.  After what I saw today, though, I know we are well on our way to getting better.

Over and over again as I have sat at Isaac's bedside and talked to him about the people that love him, I have been reminded of the eternal significance of families.  Tonight as we observed Isaac's reaction to his siblings, aunts, and cousins, the profound role that families play could not be denied.  "God gave us families to help us become who he wants us to be.  This is how he shares His love, for the family is of God."