Eyes and Beyond!

     Today is the day we have been waiting for since March…surgery day# I’ve lost count.

We never are “excited” for surgery days but they are always days of great anticipation.
A day that holds promise for Malakai’s future and a hope of complete healing. 

A “few” things:

  • Malakai is 5 years old and is still 38in. and (as of weighing in before surgery) 29.7 Ibs. for our little mans sake, I am going to round it to 30Ibs.  We love our pint sized powerhouse and don’t expect anything more of him than what God has designed.  We aren’t concerned so much that he is small, rather, that he hasn’t gain any weight in a year and has only gained a mere 4 Ibs. in 2 years! 

->  Scheduled: Dr. Walker will be performing a Scope and biopsy of his Stomach and GI track in search of H-PYLORI.  If it is indeed the parasitical bacteria causing him to be sapped of his nutrients, it will be another round of antibiotics to try and knock it out again.  If none is found, we will be referred to a Endocrinologist to try and find out how to help Malakai grow strong and healthy.  

  •   Malakai was born without a Larynx/Trachea; or more precisely, he had a level 3 Laryngeal-Tracheo-Esophageal cleft that left him without a usable Larynx/Trachea.  He had it reconstructed and we have been attending swallow and speech therapy since.  When we came for his eye surgeries last time, Dr. Prager wanted to take a check to see how the healing process was going.  He found a hole in the repair but didn’t want to do anything right away as he feared he would open it further.  Things have been healing for a long time now but Kai is still aspirating so he wants to take another look to see if he will need a repair redo surgery.

-> Scheduled: Dr. Prager will be doing an Endoscopy to check on his repair and see whether a repair redo surgery is necessary.  We are praying for a complete healing of that site.

  • Malakai’s eye sockets are facing outwards on the side of his face; like a horse.  He has severe Amblyopia “Lazy Eye.” His brain was not able to communicate to both eyes as we are not built to see like horses.  When we met him in China, he wasn’t using his right eye at all; the brain had completely turned if off.  When we visited the eye doctor at Children’s, she informed us that he had the eye development of a newborn in that right eye.  Over a year ago, Malakai had surgery on his eyes to release the muscles on the outsides of his eyes so he would be given the chance of Binocular Vision (seeing with both eyes) and to preserve the vision capabilities in his right eye along with building up some of the atrophy in the right eye.  He patched for a year and we saw leaps and bounds of progress in his eyes.  The surgery did give him binocular vision but also took his peripheral vision so he had some adjustments to overcome (Which he did like a champ as he always does.) Back at the beginning of 2018 we noticed a wavering of that binocular vision and the return of Amblyopia.  Although it wasn’t want we wanted to hear, we weren’t surprised by it as we knew that these surgeries are just place holders to help preserve Malakai’s vision until he is old enough to have the main Cranio-facial reconstruction. 

-> Scheduled: Dr. Braverman will be doing the reverse of his last surgery and will be tightening the inner muscles of his eyes to help pull them to center to help regain the binocular vision.  He will get a break from patching while he heals and then they will reassess when he goes in for his post surgery appointment. 

 

HERE WE GO!

Today Malakai will be having double eye surgeries, a stomach and lung biopsy, and a scope of his trachea/larynx at Children’s Hospital at 3pm and Becki overheard that he wouldn’t be able to have any food after 5am. This concerned her as that seemed awfully long to go without food since he wouldn’t be awake that early to eat so his last meal would have been dinner. 

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She took it upon herself and at 4:30 AM, I woke to the sound of an alarm. Becki wanted to make sure to give Malakai a liquid feed before 5 AM so he would be sustained further into the day. My heart lives for these moments; to see my children be like Christ to their siblings and others.

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11:30 AM: My mom came and gave Malakai a special paw patrol lovey gift to take to the hospital and to pray over him and anoint him. We are so blessed to have such a precious support system. Prayer warrior strong; praise God!

 

1:10 PM: After a siesta on the way, Malakai is jazzed to go. (I was parked at a long light in traffic) He chose his shirt for today. He often chooses it and it warms my heart. He is so very loved; Here in America and by his SHBH orphanage family.

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2:30 PM: Malakai has been snuggling his loveys (“Bloccoli” from Auntie Elaina and “Squooshy-Marshall” from Grandma Laura) and asking a lot of questions. He has calmed since I reassured him that he would be napping before they started trying to find a vein for the IV.  

 


3:05 PM: We were still waiting to go back… don’t we look dashing in our in our bunny suits?!  It made me giggle that Kai was swimming in their size 2/3 hospital outfit.
We love our pint sized powerhouse. 😍

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4:00 PM: Stage one was done in just about an hour. They didn’t tell us the exact amount of pokes it took to start his IV but they said it wasn’t nearly as bad as the last time.  I am so thankful to hear that; they said they were going to us ultrasound to find a vein to aid in a successful IV site. I am so thankful for aiding technology.

** Dr. Prager was shocked to find that the hole found in esophageal laryngeal cleft repair last year has disappeared!! No need for a repair redo! Praise God! **

5:10 PM: We felt we were moving right along! We finally got the call from the OR that we had been waiting for. “Kai is doing great and the lung and stomach biopsies have been completed”…on to eyes !

6:16 PM: He finished and Dr. Braverman came in to tell us that he did really well!  It would still be about 15 – 20 minutes before he was ready for us to see him, but it was a sigh of relief to be done all the surgeries and procedures and to have all done without a hitch.

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6:34 PM: We finally were able to see our sweet Malakai.  He was sleeping so peacefully. I couldn’t help to notice his precious body stretched out like Christ on the cross;  I promise son, all this suffering is for the greater purpose and this is one step closer to you becoming whole and healthy.

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6:45 PM: We were told that Malakai could go to the second stage of recovery in a room down the hall.  Malakai was recovering so well that we were told that we would be able to start the discharge process.

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7:40 PM: We were released! We are so thankful for all the amazing care providers at Children’s that we were blessed with for the entire day.  Malakai is currently cross-eyed but they said that it will calm over time. I will update through his healing process but he has done so well thus far; we love you Kai.

 

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