Six Months Home!!

Levi has been home for 6 months!!! So hard to believe. It has flown by, yet it seems like he has been with us forever. He has fit right into our family.  It always amazes me how God knows which child belongs where and how He just grafts them into your family.   Levi's transition has been easy. He has adjusted tremendously and adores his brothers and sisters and we adore him!  We have enjoyed watching him learn to play, run, jump, and gallop. How to wrestle and rough house a bit.  His little personality is blossoming and it is so fun to watch.  He loves playing with Legos and blocks, farm animals, trains, and cars.  He loves to color and put his favorite things in his backpack.  He loves to eat and is not at all picky. He likes to help cook and set the table.  He has grown 2 inches and gained 2 pounds since October.  (Although the weight was gained in the hospital from the feeding tube.)  We are hopeful that he will gain some weight once his heart is fixed and his body doesn't burn off all the calories from working so hard.   His tracheal reconstruction was successful.  You can tell he is getting more air even in his speech. His voice is bigger and clearer. He is still short of breath but not as severe as before. We believe this is due to the heart defect and should disappear after the heart repair.  I remember being scared about Levi's heart condition. Feeling like it was too complex for us to handle. Hearing God say, "It's not too complex. You can do this."  God was right on. Levi is a wonderful gift to our family.  He is precious beyond measure. A pure delight.  We are truly blessed.   In 6 months we have watched the Lord bring healing physically, medically, and emotionally to Levi and it has been awesome to watch. I can only imagine what the next 6 months will bring.  

Meeting Levi

6 months home

And, we think Levi loves his family, too......

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: 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

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

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

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. ;)