Thursday, April 25, 2013

The Tiniest Details

Psalm 121:5  "The LORD himself watches over you! The LORD stands beside you as your protective shade."

We have been home 6 days. Levi is finally starting to act like his normal self. We had a few worrisome days, not because of anything physical, just his personality was so altered.  We were told it was mainly due to withdraw symptoms. They also said it would take 7 days to overcome. They were correct! I am happy to say Levi is back to his normal happy self today! I am also happy to report Levi runs and goes up stairs without sounding like Darth Vader! In fact, there is no sound at all!! So good to hear him breathing with ease.
I have to share, God is amazing.  I know He cares and is always with us. Watching over us, protecting us. But sometimes little things come to light and you just stand in awe at how much He really does care. At how much He takes care of the tiniest details.  You are all probably saying, "Okay, so what did He do?" Well, the day of surgery we were all at peace. Even Levi had a smile on his face right up to being taken back to surgery. Well, except when a doctor or nurse came in....then he kind of zoned out like "maybe if I don't talk or look at them they won't know I'm here." lol.   Anyway, our wonderful children's pastor and his wife came up and prayed with Levi before he went back to surgery. Then our preschool pastor came and sat with Mark and I the whole time of the surgery.  We also knew hundreds of people were praying for Levi. We felt comforted. We felt at peace. We knew God was in control and going to work all things for good so Levi could breath easier.  What we didn't know, was God wanted more. God wanted one of His workers right in there with Levi. Praying over him and keeping watch.  Let me explain.  

 Last night we went to church. We have attended this church for almost two years.  It's a bigger church and while we know almost all the kids we do not know all the parents.  While walking down the hall to take Levi to the bathroom, a lady stopped me and said, "Hey, that's Levi! I had him in surgery a couple of weeks ago! I'm a surgical nurse."  Turns out this lady attends our church! I had her son in Caravan last year. She is also my daughter’s school nurse. But, she also works at Children's Hospital.  Just so happens, this sweet lady from our church was in with our son during surgery. Praying for him as well, knowing he was on our prayer chain. God not only answered our prayers for a safe successful surgery, but He made sure a sister in Christ was with Levi the whole time! Isn't that amazing? I didn't even know. Wouldn't of known had she not said something.  She usually works urology, so it's rare she was down there for a trachea repair.  She said she would watch for him June 26th for his heart surgery.  Again, doesn't usually help with cardiac cases but she said she could most certainly be there to walk him back if need be.  So far, the doctors have been great about letting us stay with Levi in the surgical unit until he is all the way asleep, but you never know. 
I love that my God is a God that watches over us. He is concerned with every tiny detail.  He doesn’t miss one thing.   He does not just want to observe our lives, He wants to be actively involved.  

Friday, April 19, 2013

Friday: Going Home!!

Thursday was pretty uneventful, so I didn't post.   We did get moved over to the step down unit which has been nice.  Nurses aren't in as much and you are free to walk around with your child as much as you like without permission.  Levi spent most of the day awake. He got some stitches out and
permission to go home Friday!!  We did notice he started to have some withdraw symptoms from the morphine.  Nothing serious just profuse sweating and cold chills were he couldn't get warm.  He looked like he had just jumped out of the tub without drying off, he was so wet!

So, today, Friday, we are just waiting for the doctors to round and give us the final okay to go home! We both can't wait to get home to see everyone and I can't wait to see Levi back to his normal self! He gets very serious in the hospital and hardly talks or smiles. I get a few when no one else is around but as soon as he sees some one in a uniform...forget it! He was like this for his heart cathe, too.  Not quite sure he trusts them and I can't say that I blame him.

Psalm 118:15 "Shouts of joy and victory resound in the tents of the righteous: The Lord's right hand has done mighty things!"


Wednesday, April 17, 2013


Today has been a great day. One, I finally got to hold Levi!! We took a two hour morning snooze together in the recliner.  So good to hold my precious boy.  By the end of it all lines removed and normal activity has been allowed.  Levi was able to go to the playroom twice and play with Meg and Samuel. He has started using the potty, as he refuses to go in the diaper.  He drank 6 containers of apple juice. Ate fishy crackers, scrambled eggs, and chocolate ice cream.  All narcotics have been discontinued so we are hoping we will see more of his happy personality tomorrow, as we still would zone out today and have periods of agitation.

He kept the nurses on their toes as he can pull of all five cardiac leads in ones swift hand motion, as well as is O2 sensor! He is quick and he is strong! He is stubborn and determined! They moved him to a regular bed as he was trying to crawl out of the crib and they were worried he would fall.  This is nice as I can now sleep with him!!

 We have not been moved to the step down unit yet but I overheard all their beds are full so maybe tomorrow or maybe we will go home from here? I was hoping for tomorrow but figure we are looking at Friday. 

Thanks everyone for all your prayers!!!

Tuesday, April 16, 2013


Last night was a rough night. Levi was extremely agitated to the point it took 3 of us to hold him down so his neck would not move. Even the Meds seemed to not phase him. It did not help that both of his IVs had to be replaced. By 10am he was out and he never woke until 9pm tonight!! Dr. Willet arrived around 5:30 and took him down to the OR by 6:00. The procedure took all of 6 minutes and he was back up in the room by 6:45. His trachea looks great!! By 10:00pm he was off the vent! He has done well and he has been nice and stable! I still have not gotten to hold him as he is still coming out of the sedatives and is still very mad. Hoping a good night sleep will get some of the Meds out of his system. Thanks for all your prayers!!!

Monday, April 15, 2013


Today has been a pretty good day. Levi has been able to be out for longer periods of time with not as many wakeful, agitated moments.  We did have a rough half hour around 8pm but we are resting peacefully now.  When he is awake nothing at this point consoles him. He wants out! Out of the restraints and out of the bed! Only 20 more hours, Levi!! I can't wait to finally hold him. Then we will both be happy! Pray that his trachea is healed enough for the vent to come out and for it to look good even though he has had some very wiggly moments!! Pray we can come home Thursday!!!

Ephesians 3:20 " Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think."

Sunday and a Day Late

Sorry I did not post an update yesterday! I was actually able to sneak out of Levi's room around 11am and spend time at RMH with Samuel and Meg.  I even got a shower, some lunch, and an afternoon nap with Samuel.  I returned at 5pm to a little guy who was just waking up so timing was great.  Mark stayed this whole time with Levi and was sad he didnt wake up for him, though.  I think he has a mommy radar and knows when I return! They changed his Meds Sunday morning and they are working much better! He sleeps peacefully for 5-6 hours before waking up and is not requiring any extra doses in between.

When I walked in his room those eyes flew open and his arms raised up to be held.  How I hate telling him "Mommy can't hold you, yet."  he took his little finger and pointed adamantly to the bed...meaning jump in bed with me if you can't hold me!!  I had told him daily the week before surgery that I would not be able to hold him but could lay with him. He obviously remembered!! However, this time around he is in a small crib and mama doesn't fit.  And even if I did fit the are too many tubes and lines going into him. There is just no way right now.  But I told him 2 more days and I will be holding him and sleeping with him!!!  He held up his 2 little fingers and nodded.  He amazes me at how much he understands everything.

 At 8pm, Dr. Willet came by and removed his rubber and drain.  That is one cool way to use a drain.  That band slipped right out so easily and caused zero pain. Levi didn't even flinch! The nurses are all loving him and think he is just the cutest little guy.  He waves to one of his nurses and and she said "oh, are you waving hi?". Levi shook his head no, and waved again.  She said, "are you waving bye? Do you want me to leave?" Levi  looked right at her and nodded, "YES!"  Fortunatly, she laughed and thought it was cute. ;)  

Saturday, April 13, 2013

Saturday Evening

Levi has slept great this evening.  Everyone is surprised at how how his tolerance is for the sedation Meds and they have to keep uping them.  They finally quit using the paralytic due to its side effects and have used benedryl, which has knocked him out pretty good on top of the morphin and other sedation drug.  The frequency of the jerky movements has diminished.  Our ENT stopped in and said he looked wonderful. He saw Levi thrash and said he looked like a fish on a hook.  Guess that pretty much describes it.  He felt as long as we can calm him we should be okay.  It makes sleeping hard though because I am scared to take my eyes off him as you don't know when the drugs will wear off and the thrashing begin!

The plan is: Sunday the rubber and drain comes out.  Monday his feedings will be discontinued in the evenings and steroids started.  Tuesday at 5pm will go back to surgery to have a bronchoscope done.  If all looks well they will put in a smaller vent tube and once fully awake they will take him off the vent.  This may happen Wednesday morning depending how long sedation takes to wear off.   Wednesday or Thursday we should move to the step down floor for a couple of days.

Saturday Afternoon

Levi has been sedated most of the day.  He is just thrashing around too much. I beleive it's mainly a side effect of the drugs but they need to be given else the thrashing will cause more scar tissue and stenosis.

He has not lost his sense of humor, however.  Once when he was being a bit too wiggly the nurse and I both held him down and said "SSHH" trying to calm him down. He put his tiny little finger to his lips and tried to shush us back then grinned real big.  Such a stinker even when sedated!  Made us all have a good laugh though.

His cultures all came back clear so he doesn't have an infection.  The fever was gone but came back this afternoon. They are just going to watch it. It's very low and they do not seem too worried.  We have noticed his blue hue is back. :(   As he is breathing more on his own he is taking less oxygen. The pink toes and high oxygen level was due to the breathing the vent was doing for him.  We are back down to 75-78 for his oxygen levels and blue toes, lips, and fingertips.  We look forward to knowing that in June he will have beautiful pink toes! You don't realize how blue they are until you see them so nice and pink.

Continue to pray that he would not thrash about and that the Lord would protect that trachea as it heals.

Saturday Morning

Last night went pretty well.  Levi continues to do well. The only problem we are having is his movement.  The nurse and I do not agree about the source of the movement.  She feels Levi is agitated from laying still and twisting his head and body purposely.  Therefore she keeps ordering more paralytic drug to make him lie still.  I feel the movements are involuntary and caused by the medicine wearing off.  The movements remind me of a catterpiller forming its crysalys if you have ever observed that.  Very rigid and jerky.  It looks uncontrolled.  He will be sleeping soundly and all of a sudden the movement starts and jt startles him awake.  That doesnt seem voluntary to me. Also, yesterday he didn't even need to be sedated he was so calm and cooperative.  They even lossened his hand restraints a bit so he could play with his balloon.  This too makes me feel it's the Meds. We will see when a new nurse comes in.  If it is the meds, everytime she gives him more its going to have the same results eventually.  Whatever the cause, the problem is, too much movement will move the vent and rub on his trachea adding to scar tissue.  We don't want to be back were we started.  Please be praying his jerky movements stop whatever the cause.

New nurses in and they agree with me that this is not voluntary! They are changing the dosage of his Meds to keep him still.  Pray it works!  The cath was removed  as well so pray his bladder cooperates.

Friday, April 12, 2013

Friday Evening

Levi had a great evening.  He was awake from 6:00 to 6:30 wanting to play with his toys.  He is still restrained so play is limited. He is such a good little boy. So cooperative.  He is being so goody hey took him off the paralytic sedative.  He has also tolerated food through his g tube and is up to a normal feeding. It was good to see him playing a bit and interacting.

Looks like we may have a rough night. Mark was to stay the night with him so I could get some sleep and spend time with Samuel and Meg.  (I was up all night with him last night)  We only made it until 10pm and he was crying for me and only me!! :). That is a good thing!!  Fortunately, Samuel was sleeping already and I am hoping he doesn't wake up and realize I am no longer beside him. Else Mark won't get any sleep either!  Levi stopped fussing as soon as he saw me and promptly went to sleep.  He seems agitated though and keeps twisting his body back and forth which he can't back to sedation for a bit.  He probably is tired of laying flat on his back and not being able to move his head and arms.  Night time always seems harder.  Four more days and he will be able to move a bit more which will be a huge help.

Pray for an uneventful, peaceful sleeping night for all!

Friday Afternoon

Levi has developed a temp this afternoon. They are running some cultures to make sure there is no infection. No one seems real worried as it is pretty common for your body to respond to a surgery with a fever.  Do continue to pray there is no infection.

We has been awake a bit more but for very short periods. We continue to get some smiles and he loves the Thomas balloon daddy brought him!

Ronald McDonald house has been a blessing.  So nice to run over today and get a shower and a clean change of clothes.  They even gave us lunch.

Tanya, a cardiology nurse from our last visit, and Tracey, our nurse today, we're able to pull some strings so Meg and Samuel could be on the floor in the playroom.  They are not allowed to be in Levi's room but so helpful to have them one door down so Mark and I can switch on and off.

Friday Morning

Levi is such a trooper!! He woke this morning and gave me a smile!! He was only awake maybe 5 minutes. But shook his head "yes" that he wanted to see daddy, Meg, and Samuel.  He smiled again when I said they were coming. Then daddy called and talked to him and boy did that get a smile!!!  He is sleeping peacefully now. His cardiologist and ENT have both been in and both gave great reports and said he is doing outstanding!!  They are going to discontinue the paralytic and see how he does since he was smilie and calm earlier.   Praying he can remain off it!  They are also going to start feedings through his GT tube.  God is good!!

Our First Night

Levi had a pretty good night.  We had a few ups and downs. He has mostly slept, but when he did wake he was in a lot of pain and looked terrified. Partly, I think due to the pain and partly due to him trying to talk and cry and having no sound come out.  He calms down when I talk to him and he shook his head when I asked him if he was hurting. (He also stomped his little foot, which is not restrained.  ;) ) He signed, best he could with arm restraints, that he wanted water.  They were able to dip a sponge stick in some water and squeeze it it his mouth. Then they upt his pain Meds.  A little later he decided he would just try to bite through that vent tube in his mouth so that earned him a paralytic sedation drug. :(   He is now completely out.  I guess in some ways that is good since he was so miserable.  They also placed a cath in a few hours ago as he was not going to the bathroom.

He looks good though and his heart has been stable.  His oxygen has been fluctuating back down to around 74 but that is within a normal range for him.  We were ecstatic after surgery that it was 84.  Not sure why it went back down but hoping it rises this morning.  I stayed by his bed most of the night, awake or dozing lightly, so I would there if he woke.  Unfortunately, I moved to a chair behind his bed at 5:00 due to an X-ray that was being taken. I fell asleep and didn't wake until 5:30, which isn't bad in itself but I missed Dr. Willet coming in!!  Anyway, he told the nurse everything looked good and that he would do the bronchoscope on Tuesday to see if the trachea is healed enough to remove the vent.  That is an answer to prayer!! We were praying for Tuesday as Mark has to return to work on Thursday. Looking forward and praying for him to be a little more comfortable today and less agitated.

Everyone on the home front did great last night. Mark, Samuel, and Meg will be joining me at the hospital today.  We will be moving into the Ronald McDonald house so the little ones will be close by and Mark and I can rotate shifts.  The hospital is going to make an exception and let them visit as well!

"My hope is in you, Lord
All the day long.
I won't be shaken by drought or storm.
A peace that passes understanding is my song,
And I sing
My hope is in you, Lord." (Aaron Shust)

Thursday, April 11, 2013

Out of Surgery

Levi never ceases to amaze me. This kid is honestly one of the bravest people I know.  He knew what was coming. Yet, he trusts and moves forward knowing what is about to happen.  He was such a trooper. He did not complain once about not being able to eat or drink. His surgery was scheduled for 1:30 but they didn't take him until 3:00. Still, not one complaint.  When Dr. Kirschner came in to talk about his lip procedure we shared with him that Dr. Willet would be doing a bronchoscope in 5-7 days to see if the trachea had healed enough to come off the vent.  Dr. Kirschner did not realize this and decided to cancel the lip adhesion.  The lip adhesion is very fragile and can rip with even a smile.  He felt that the scope would cause the adhesion to rear so he felt it best to postpone this surgery.  We are thankful to have a doctor who is concerned with doing things right even though it messes up his schedule!

I was able to go back with him to Pre op and stay with him until he was out.  The anesthesiologist was not real keen on this but Mark spoke up and Levi, right on cue as they tried to take him yelled "NO, Mommy!"  so the anesthesiologist caved and let me go back! Levi watched me the whole time and right before he went out he said, "Mommy."  So, so sweet it was!

Surgery went wonderful! They finished around 5:30.  Levi's heart remained stable for the most part. Dr. Willet said his blood pressure and oxygen dropped a few time but they just stopped and waited for it to come back up before moving forward.  We finally got to see him around 6:30.  Poor little guy is hooked up to all sorts of machines.  When he wakes he looks scared. I am sure the tubes in his throat feel funny and he can't talk or make any sound. That has to be scary, too.  When he cries it is silent tears. :(. I have not been able to hold him but when he wakes he looks for me and reaches out his tiny hand for me to hold.

I have pictures but can't upload them tonight so will add them later.  Be praying Dr. Willet can evaluate his trachea on Tuesday.  He made a comment he may wait 7 days due to his schedule.  Don't really want to be on the vent 2 extra days because of someone's schedule so be praying his schedule is clear and that Levi's trachea is healed enough to be off the vent!!

Thanks for all your prayers today!!

Monday, April 8, 2013

We Know Who Goes Before Us

In three more days it all begins. Levi will have the first of three major surgeries. The doctors will tackle his tracheal stenosis and begin the first steps of his lip repair. This should really be the easiest of all the surgeries, but with his unrepaired heart it throws in a bunch of unknowns. The hardest part will be keeping a 3.5 year old still while on a ventilator for five days. While he will be breathing on his own, the ventilator will be in place to hold the tracheal graft in place so it does not close back up while healing. He will also have a feeding tube because of the ventilator. He will not be able to talk. We will not be able to hold him for five days. We expect he will be sedated a good part of the time. It's going to be a long five days, BUT we are at peace. The God that held and protected Levi while he lay on a sidewalk waiting to be found; that kept him alive in an orphanage suffering from malnourishment and a severe heart condition;  that placed him at New Day where He knew he would receive the loving care he needed... IS the SAME God that will hold him through these surgeries!

"Whom Shall I Fear?" by Chris Tomlin

You hear me when I call
You are my morning song
Though darkness fills the night
It cannot hide the light
Whom shall I fear
You crush the enemy
Underneath my feet
You are my sword and shield
Though troubles linger still
Whom shall I fear

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side
The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

My strength is in Your name
For You alone can save
You will deliver me
Yours is the victory
Whom shall I fear
Whom shall I fear

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side
The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

And nothing formed against me shall stand
You hold the whole world in Your hands
I'm holding on to Your promises
You are faithful
You are faithful (2x)

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side
The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side (2x)

Whom shall we fear? What shall we fear? NOTHING! God's got this!

We do have some specific prayer requests:

1. Levi would be at peace. Both before and after surgery.
2. That Levi would not fight the vent or feeding tube.
3. That pain would be minimal.
4. For the graft used to widen the trachea. That it would adhere and not narrow back down.
5. For his heart to remain stable.
6. For his doctors to have wisdom, discernment during surgery, and for skilled, steady hands.
7. For his initial lip repair to go well and that Levi would like it. (He has stated he doesn't want it fixed) I think when he sees how much more he can do with a repaired lip he will be happy! We will all miss that wide grin and his sweet half puckered kisses! But, I bet he will be able to blow out his birthday candles this year for the first time! And bubbles! Oh, how he tries to blow bubbles!             
8. For our other children whose routine are going to be crazy for a week and will not see much of mommy.
9. For our hospital stay to be short! They are quoting 7-8 days. We are praying for 5-6.

Thanks and we will keep you updated as we are able!