Delightful Deliveries

 After several attempts - and failures - to revive the toilet troubled iPhone I finally gave in and paid the extraordinarily high deductible for my "insurance" and voila!  The next day, I had someone else's ruined phone that they refurbished and sent to me. 

 I don't know that I have ever been so happy about a package arriving.  It's not like I have this love affair with my iPhone - I didn't want the dang thing in the first place.  I begged them to upgrade my old phone, and they laughed at me, and then they gave me the iPhone for free.  I do, however, enjoy being able to communicate with my friends and family members.  I have discovered through sad personal experience that a phone is about as essential as oxygen these days.  I was beyond glad to have one again.

 And the same blessed day, this beauty showed up.  We spent the last 5 years living outside of city limits, which means outside of city utility services.  Not anymore my friends.  We have lived in our house for a month now and we have made lots of trips to the dump.  Now we have our very own city garbage can.  This is a very happy thing.

 Why, you might ask, is my toddler precariously perched on the edge of his high chair tray?  Well because I strapped him in safely, left the kitchen momentarily for an emergency bathroom break, and came back to this.  The scariest part is that the bag of dried fruit that he is holding (and that he kindly dumped all over the floor) was on the kitchen table when I left, which means he somehow stretched himself across the tray to the table to obtain the fruit in the first place.  I may not survive this child.

 I consider myself lucky when he chooses to play in the cabinets rather than between my legs when I am trying to make dinner.

 Jeff's work schedule is harder for all of us than we had anticipated.  I don't think Jeff gets one ounce of time to himself during the 17 hours that he is here each week.  None of us can get enough of our dad.

In the effort to transform our house into a home, Jeff has been hanging pictures. Isaac got the privilege of being hoisted up onto the "plant shelf" to help arrange decorations (aka dust collectors) up there. (Side note: I don't know why this area is called a plant shelf.  It will never shelve plants because I couldn't water them, and I refuse to adorn them with plastic greenery...ick.)

 Levi pretty much got shafted this wrestling season.  His brother's extended hospital stay didn't leave any time for wrestling tournaments.  He got to compete this last weekend for the first time and took second.  He is looking forward to trying some freestyle and Greco to extend his season.

 Life is getting back to normal around here, or we are adjusting to our new normal - I'm not sure which.  Our days consist of all the normal stuff like sending the kids off to school, laundry, dishes, bills, grocery shopping, cooking, cleaning, homework, programs, practices, and all the rest.  But Isaac can't do any of that.  Keeping him healthy means keeping him away from stores and preschool and sports class.  In order for me to watch Daisy and Levi participate in anything, I rely so much on our amazing family members for help because Jeff is usually out of state with work.  Along with the standard everyday list of things to do, I have tried to incorporate more storytime, play time, and enjoy-my-amazing-kids time. 

Isaac is getting stronger every day.  His appetite has returned to normal and he is sleeping a little better at night.  He still tires easily, but is not lethargic anymore.  He is able to climb up the stairs without asking for help or stopping to catch his breath.  He is still on medication, and he will continue to follow up at Primary Children's, but aside from keeping him away from as many germs as possible, he doesn't feel or seem sick at all.  That is a really good feeling.

And after prayers and scriptures when I kiss my babies and tuck them into bed, I go back to to the kitchen to do the dishes and count my blessings.  I never cease to feel amazed at the ways I witness God's hand in my life.  I am ever thankful for His patience with my endless imperfections, and for His love in the midst of my mistakes.  I want to be the kind of parent He is.

Check up

Posts with pictures are always more fun to read, so here you go:

I would post the pictures that I have actually taken, but I can't because my Terrible Toddler PUT MY IPHONE IN THE TOILET TODAY!  (which means not only do I not have pictures, I do not have access to so many things...like MY MOM!) And needless to say, he was very proud of himself.

 He might look cute, but this kid might be the death of me.

This child is a maniac...and this is not my first rodeo.  I have survived three other toddlers, but Titus the Troublemaker is pulling out all the stops and I don't know how to contain him.  Of the two of us, I am thinking only one is going to survive this next year.

In addition to exploring the option of Temporary Adoption of Terrible Toddlers today, Isaac and I made the trek to Primary Children's for his follow up appointment.  We had to be there by 8:30 and by the the time we took rush hour traffic into account, we had to leave home very early.  It was still dark and Isaac was asking the funniest questions and making the most interesting observations as we drove.  I love that kid.  (Sidenote:  Today Isaac was helping me in the kitchen when I said, "Isaac, I love you so much.  I am so, so glad..." I was going to say "I'm so glad you are such a good helper," but Isaac interrupted me and said, "I know, you're so glad Jesus gave me to you.")

Since the doctors have never really seen Isaac's specific condition before, treatment is one step at a time.  They are watching the infected blood clot very closely.  He continues on antibiotics to try to address the infection end of things.  If all goes well, the infection will clear and then the blood clot will slowly break up on it's own, similar to the way any bruise in the body heals.  We are praying that this is the case, and I try not to think about any alternatives because there are so many uncertainties.  Today the doctor reemphasized how important it is that Isaac does not get sick because of the location of the blood clot and the danger that a respiratory infection could pose.  So Isaac remains quarantined.  He does not get to go anywhere.  No one is allowed to come to our house.  The hardest thing for him at this point is not being sick - he feels fine, it is being bored.

Today as I was making my way through rush hour traffic on the 7 lane highway for what feels like the 7,000th time, I felt so thankful for the place I call home. I love where we live.  I love that there is one stoplight in the whole county. I love that I know the butcher at the grocery store, the clerk at the post office, the principal (and custodians) at the school, and the tellers at the bank. I love the support that I feel from so many people in our community.  One night at the hospital the charge nurse asked me if it drove me crazy that everyone in the whole town knew we were at Primary Children's.  I answered, "Not at all.  There are a lot of people that love Isaac.  We need their support."  And we have felt it every step of the way.    

Patience and Yeast

 Today Isaac said, "I'm so glad Jesus made Titus.  I love him!"

And today we made bread.
Isaac is my helper in the kitchen.  He always walks in and says, "Mom, do you need me to help you?" to which I always reply, "Of course I do!" (and yes, accepting his help is sometimes harder than others...)  Today he came in and asked, "Mom, what are you makin?"  He had pushed a stool up to the sink and was washing his hands before I had a chance to respond.

I make bread once or twice a week so I buy yeast by the pound.  Today I opened a new package of yeast and put it in a Gladlock container.  Isaac kept asking when it was time to put the yeast in.  "At the end," I said, "right before the warm water."  When we finally had all the dry ingredients in Isaac asked, "Now is it time for the yeast?"  I was across the kitchen and answered, "Yes," as I turned around to see him pouring the whole container of yeast into the mixing bowl.  "Wait!" I shouted.  "We just need three of these," I explained, holding up the tablespoon.  "Uh-oh," Isaac frowned.  His shoulders slumped, he slid his hands between his knees, and his head fell to his chest.  "Sorry."  I took a deep breath...and then I took another deep breath.  Dang!  What was I going to do now?  I said, "It's ok."  Then I got a spoon.  Then I took another deep breath.  I decided rather than throw out the whole batch, I would try to salvage the bread by spooning out as much excess yeast as possible.  Isaac was right by my side and we finished the bread together.  He helped me knead the dough, form it into loaves, and put it into the bread pans to rise.

As I was spooning yeast out of the mixing bowl, I got thinking about mistakes.  We all make mistakes.  I make them every day.  Sometimes we make mistakes because we are too anxious, or because we misunderstand or because there is a miscommunication.  Some mistakes can be fixed easily, and some change our lives forever.  Most mistakes, I think, though, are not that big of a deal.  In the eternal scheme of things, most mistakes don't matter much at all.  When it comes to mistakes, I think most of us are harder on ourselves than we need to be.  As I finished making bread with Isaac today, I thought about my reaction to mistakes.  It occurred to me that we can choose to learn from our mistakes without beating ourselves up or becoming discouraged.  You'd better believe that Isaac will never dump the whole container of yeast into a mixing bowl again.  He picked up on that lesson without me having to reprimand him or yell at him or fire him from bread making or even point it out to him.  In Paul's first epistle to the Thessalonians, he gives this great "to-be" list for the saints - what Saints should be and do.  One thing that he mentions is, "be patient toward all men" (1 Thessalonians 5:14).  I think "all men" includes ourselves.

 And the bread turned out just fine.  It usually does.

Isaac also announced today that he is a "Puzzle Master."  Make no mistake about it.

Happy Discharge

 Today is our wedding anniversary.  Jeff and I were sealed in the Manti Temple 12 years ago today.  Best decision I ever made.  Probably the hardest decision I ever made.  I have been grateful every day since.

Cliche as it may sound, Jeff is my very best friend.  I would rather hang out with him than anyone else.

 And seriously, though, he is Big Sexy (a nickname he earned at work...)

 Jeff and I talk about what a great team we make, and how lucky we are to have what we do in our marriage.

 With all that we have to deal with in this life, I am so thankful that my marriage is a source of strength and refuge, rather than a source of contention and stress.  Not that it's all roses all the time (I think Jeff has sent my flowers like twice, and that counts when we were dating,) we definitely have disagreements, but we respect each other and we love each other.

 Jeff is a live-in example of the person I want to become.  He is truly one of the most patient humans I have ever encountered.  He is humble and quick to forgive.  One of Jeff's gifts of the Spirit is empathy.  He has this amazing capacity to put himself in someone else's shoes and really feel what they are experiencing.  And let me just say, that quality in a marriage partner pretty much rocks.

We believe that that one of the things that makes our marriage strong is that we take time for each other.  We try to celebrate our anniversary rather than letting it slip by as just another day.  We have found that little weekend getaways bring us closer together.  Back in October Jeff announced that he was planning our anniversary this year and that I needed to be available and not plan anything.  Well, plans changed and I am at Primary Children's with Isaac today.

The GREAT news is...they just told us we will be discharged today!

After having to fast all day yesterday for his surgery, all Isaac wanted to do was eat when it was over.  We ordered some food as soon as we got back to the room, but he was too exhausted to eat.  He slept while his corndog got soggy and his chocolate milk got warm.  When he woke up we got him some fresh food and he felt much better after eating.

Surgery was not successful.  Once they got into the infected space, they found that it was not an abscess of infected fluid, but an infected blood clot in his lung.  They could not get it to drain, and it was too dangerous to try to remove it surgically, so they left it there.  One of the doctors told me, "My colleagues and I have never seen a blood clot like this as a result of pneumonia with pleural empyema."

 When his fevers spiked again, his heart rate was through the roof.  Since he had just come out of surgery, they took extra precautions and had an EKG done to make sure his heart was alright.

 Thankfully his heart calmed down when his fever broke, so we did some lung exercises and blew bubbles.

 This morning when we woke up, Isaac announced that it was time for "morning jobs."  Off we went to the bathroom to brush teeth, comb hair, and change hospital gowns.

When we got him back in bed (we decided to skip 'make bed' on the Morning Jobs list) Isaac hooked  himself back up to all the monitors.

Initially the doctors indicated that Isaac would need to remain on IV antibiotics through tonight and than transition to oral antibiotics tomorrow,  If he tolerated those then we could be discharged tomorrow night or Monday.  He didn't fever through the night, however, and so this morning they said that we would be going home today.  Best news ever!

As hard as it is to be here, going home is hard too.  Home still does't really feel like home.  We have to be very careful with Isaac.  We can't go and do all the things we are used to doing.  Since Isaac's condition is not something they see often - as in "never" - we just have to take one day at a time.  When I asked if there were any special instructions, the doctor looked me in the eye and instructed, "Do not let him get a cold."

Helping the other children cope with all of the change and difficulty requires a lot of patience and attention.  They have to miss out on a lot of things because we are busy taking Isaac to appointments.  Levi hasn't been to one wrestling tournament this season.  I tried to go watch Daisy compete in the Geography Bee at the school earlier this week, but it was a hopeful mistake.  Isaac simply can't go to things like that.  We had to leave in an early interruption.  Transitioning to this new normal will take time and patience for all of us, and we will continue to rely on the support of all of the friends and family around us.

We will return to Primary Children's next week for followups.  For now, we are looking forward to going home.

Procedures and Unpredictables

It is true that the events of our lives are unpredictable.  We do not know what will happen tomorrow, or even in the next hour.  We make plans and create schedules, but all of that can change.

After waking up with a fever on Tuesday morning, Isaac continued to decline.  He spent two and a half days laying on the couch.  He didn't eat or sleep much.  Then we got the call that sent us to the emergency room at Primary Children's.

 When we were sitting in the ER Isaac was complaining about his itchy hospital bracelet.  He looked away with his sick eyes and said, "Mom, you were wrong."
"What do you mean?" I asked.
He looked up at me with those heavy green eyes. "You said I was getting better, and you were wrong."

 The first attempt to place an IV failed, so we had to go through that process twice.  Isaac is so brave, though.  Braver than a lot of people a lot older than him.

 After the IV was placed, Isaac had a CT scan of his chest to see exactly what was going on in there.

  They found a pocket of infected fluid about the size of a golf ball in the lower lobe of his left lung.  The fluid isn't making it hard for him to breathe but it is making him sick.

 After the labs and CT, it was time to move from the ER to the Children's Medical Unit.  On the way here, Isaac said, "I hope I get to go back to J."  We are in a different unit now, but Isaac seems ok with that.

 After we got into our room, Isaac announced that he was hungry, which was very good news considering he hasn't wanted to eat anything for the past three days.  We went to the cafeteria for a grilled ham and cheese and chocolate milk.

 And I got another yellow badge.  This says I am Isaac's mom.  It says I can sign the forms.  It means I can be with him.  It means I have a sick child and that we have to stay here together away from our family and our home.  It also means that we are at a place where Isaac is getting the best care possible.  Under the circumstances, I really wouldn't want to be anywhere else.

I was taking a shower this morning when the Child Life Specialists came with playdough and puzzles.  Isaac was set until it was time to go down for surgery.

He got to ride in a wagon down for his procedure.

 The experts at this amazing hospital kept Isaac distracted while the specialists discussed Isaac's procedure with me.  Treatment options for an abscess like this typically range from antibiotic treatment on the conservative end to drainage through a chest tube to removing part of the lung on the aggressive end.  Isaac was going in to drain the abscess and place a chest tube.  Since the abscess is inside the lung, some of the risks involve bursting the infected abscess and spreading the infection, and puncturing the lining of the lung creating an air leak into the pleural space.  The physician explained that these risks are minimal but real, and took time to answer all of my questions.

 I stayed with Isaac while they sedated and prepped him for the procedure.

 He just wanted to get it over with so he could eat lunch.

I felt uneasy when I left the special procedures room as Isaac fell into sedation.  I came back to his room to pray and think and write and wait for them to call.

Many of the unknowns about our situation - how long we will be here, what the results of surgery will be, what this all means long term - are a lot like the unknowns in life.  Regardless of research and evidence and studies and labs and treatment plans, life simply remains unpredictable.  There are very few things we can know for sure.  I know this:
I know my Heavenly Father knows me and loves me.
I know that He has a plan for me and I trust that plan completely.
I know that miracles are real and take place every day.
I know that there are angels around us, both seen and unseen.
I know that the power of prayer is real.  I have both felt and seen the effects of faithful prayer.
I know that the power of the Atonement can heal and change.
I know that the family is ordained of God and that He placed us in families to help us become who He wants us to be.
I know that Jesus Christ is my Savior.

Pep Talk

Isaac's condition has been worsening.  Today our pediatrician called and told us that, according to the labs and x-rays that were done in clinic yesterday, we needed to go to the emergency room at Primary Children's as soon as possible.


So here we are.


Again.


Needless to say, I needed a little pep talk to do this once again.


I found one.


In the very beginning of the book of Joshua (are you so excited to study the Old Testament?? Me too!)  Moses has just died and Joshua is called in his stead.  As part of his call, the Lord gives Joshua this incredible pep talk.  He says, "I will be with thee: I will not fail thee, nor forsake thee.  Be strong and of a good courage."  I think the Lord is trying to point out to Joshua that he will need more than just military strength and courage to accomplish what needs to be done.  This is a reminder to me that the most important strength I can depend on is spiritual strength. 


The Lord continues, "Be thou strong and very courageous," and then regarding the scriptures, He commands Joshua to "meditate therein day and night that thou mayest observe to do according to all that is written therein."  I am dependent upon the strength that comes as I study the scriptures.  I remember each morning when Isaac was in the ICU climbing up on his bed and reading the scriptures to him before the day shift came on.  I required the strength that came from those pages to make it through the day.  That requirement has not changed.


Joshua 1:9 "Have I not commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord they God is with thee whithersoever thou goest."


Even back to Primary Children's.

Still Sick

 If my naivete weren't so discouraging, my last post could seem humorous.  How dare I think that "two steps forward, one step back" was in our past?  How could I be so foolish to believe that Isaac would not be "stepping back"?  I so desperately want things to be "normal" that I ignore how long his recovery is really going to take.  I forget that "normal" will never mean the way things used to be.

 We returned to Primary Children's for followups on Monday.  Isaac had a delivery for one of his favorite nurses, Rosa.  I didn't expect the rush of emotions that came over me as I walked with Isaac into the Children's Surgical Unit to the "J" Pod.  He had never walked through those doors, only been wheeled through them dozens of times.  We weren't lucky enough to catch Rosa there, so we left her letter and headed down to get some lunch.  As we were walking away, Isaac said, "Mom, I liked when I was in J."

 Isaac had a good day.  Although his chest xray still reveals the ugly pneumonia his body is still fighting, his labs had all normalized (yay!) and the doctors said that we could do all remaining followup through our regular pediatrician (quadruple yay!) 

 So we celebrated with an ice cream sandwich.

 It is still hard for Isaac to walk very far, so he hitched a ride with Titus in the parking garage.  On the way home I called my family and told them the good news.  Isaac was better!  No more Primary Children's for us!

It turns out I contracted a hospital-borne illness during our stay: insomnia.  I haven't slept since Isaac was admitted.  Sleep and I used to be the best of friends, but not anymore.  Any parent knows that when a child is sick you maintain some level of consciousness listening for any indication of distress.  It makes me wonder, do parents of chronically ill children ever sleep?  I thought that Sleep and I would kiss and make up when Isaac was finally discharged, but my insomnia has gotten worse since we have been home.

With Jeff working out of state part of the week, and working the midnight shift the other part of the week, we don't get a lot of time to talk.  When we do, we try to focus on the positive things. Neither of us has ever voiced to each other our fears or concerns regarding our current situation.  Yesterday he worked a full day and then drove eight hours home so that he could see the kids before they left for school this morning.  Sometime in the early hours before dawn he was talking in his sleep (which he does frequently) and he kept repeating, "It will all work out.  Everything is going to be ok.  You just have to give yourself some time.  It will all work out."

 Monday night Isaac started complaining that his neck hurt.  Yesterday he woke up with a fever.  He had no appetite and laid on the couch most of the day until I took him with me to Titus' doctor appointment for the chronic rash on his face.  I asked the doctor about Isaac not feeling well, but he didn't have an appointment, so he wasn't examined.  Last night, Isaac didn't sleep at all.  This morning his fever continued and he wouldn't eat so I called Primary Children's and left a message.  He spent the day too weak and sick to even do sedentary activities that he has enjoyed lately like coloring and doing puzzles.  Right after the older kids got home from school, Primary Children's finally called me back and said Isaac needed to see a doctor.  I rushed out the door and told Daisy and Levi that I would try to arrange rides for them to get to dance and wrestling.  "Do your homework!  Get along!  Call if you need me!"

The doctor visit was more of the same.  More xrays.  More pneumonia.  More blood drawn.  More money.

Isaac's whole body was shaking and he was throwing up before I tucked him into bed tonight.  For now, he is sleeping.

We continue to rely upon the prayers and support of so many.  My mother-in-law came last night to be with Isaac so I could take Daisy and Levi to basketball and wrestling.  She helped with homework and dinner and stories.  My niece came and picked up the kids today so they wouldn't have to be home alone while we were at the doctor.  My sister-in-law fed them dinner.  My friend took Daisy to dance and another friend took Levi to wrestling all while we were at Isaac's doctor appointment.  More friends offered to help in any way they could.  My grandma put our names on the Prayer Roll in the temple.

I thought about what Isaac said, "I liked when I was in J."  He doesn't remember the days in the ICU.  Not many parents have the chance to spend 14 days with just one of their children without the distractions of every day life.  When I was in the hospital with Isaac I didn't worry about preparing meals or calendaring schedules or grocery shopping or doing dishes or cleaning bathrooms or PTA meetings.  I just worried about him.  I got to really listen when we had conversations because I wasn't on my way to do something else.  I didn't have anywhere else to be.  In discussing the clarity that came during this time, Jeff and I are determined to do our part to help each of our children recognize how amazing and precious they are.  My mission is to remain undistracted even outside the hospital walls.

I will listen, and feel, and love...and maybe, someday, sleep.

Seeing the Good

So far recovery has been a "two steps forward, one step back" process.  Isaac has had good days and bad days.  Sometimes he has no energy or appetite at all.

But last night, we turned a corner.

Both the small event, and what it meant, had us all grinning from ear to ear.

We had finished dinner and Daisy was playing with Titus on the floor.  Levi wanted to join in but Daisy wanted Titus all to herself so she wrestled Levi away from him.  A wrestling match ensued.  Before we knew it, Isaac ran across the floor and JUMPED on top of the pile.  For a split second I was worried that he was going to get hurt, but I found myself laughing out loud.  Jeff and I looked at each other knowing that Isaac was getting better.  He was starting an upward climb and not stepping back.

So today we took our first outing.  I took Isaac with me to the grocery store, and then he went with us to Levi's basketball game.  Knowing how susceptible Isaac is to illness right now makes me so fearful of taking him to these places where there are so many germs.  Doing real life things, however, makes him seem healthier and contributes to our emotional healing.

Titus is not very good at being a fan.  He wants to be on the court with his big brother.

Life is not quite "back to normal."  I am spending a good portion of my time every day organizing cabinets and trying to make our new house a home. 

However not normal, I see the world a little differently now.

I see that putting puzzles together with Isaac is a really important thing to do.  I see that reading stories to Levi is a gift.

I see cooking with Isaac as a privilege (and even let him crack the eggs.)

I see Daisy cutting and sectioning a grapefruit for the first time and I see my little girl growing up. 

When I wake up each morning I see opportunity in the day ahead.  I see the dawn.  I enjoy the smell and the lather of the shampoo in the shower.  I take special comfort in praying with my children before sending them off to school each morning. 

I don't really know how to explain this, but somehow I see good in every single person I see.  With the unbelievable outpouring of love and support that our family has received over the past month, I see so much good in the world.  Not everyone has had a child fall suddenly and critically ill, but everyone - every single person you see every single day - deals with very hard things, and we have to have each other to make it through. I see that capacity in the world around me in a way I never could have seen before. 

We go to Primary Children's each Monday for follow up visits. The doctor's explained that if everything goes well and he doesn't have any major setbacks, it would be a full year before Isaac would be "back to normal."  A year seems like a very long time.

But when I see him wrestling with his siblings, when I see that smile, and when I see the good in the world, and in every person I see, I see that we will be just fine.  I see that we will be better, and better means so much to me now.