In October of 2014 we brought our precious son home. He just turned four years old and weighed a whopping 19 pounds wearing size 18 month clothes. He was born in China and spent a lot of time in and out of hospitals needing an NJ tube to eat his first year of life. He was so tiny, nonverbal and frightened at this new family who came and took him away from everything he was familiar with.
In the year ahead we came to find out our son has an extremely rare genetic disorder. So rare that there is not another person known in the world with this disorder. The genetic specialists have no idea what his life will look like or his future. We know God knows and to us that is all that matters.
In the two years that our son has been with us he has undergone many surgeries on his airway. He also had a gtube placed so that we could feed him nutrition and calories to help him grow. On February 14, 2016 God woke me in the middle of the night to the sounds of Malaki struggling to breathe. He had known sleep apnea and we were in the process of getting him a pulse oxygen machine and bipap. I picked him up, I held him, I changed his diaper and then wrapped him in a big blanket because his little body was so cold. I sat down and held him close to me rocking him in the chair. He started to have strider, he became unresponsive, and his color changed to grey blue. I woke my husband telling him to call an ambulance. Our son was taken to our local hospital and then transferred on to the Children's Hospital PICU an hour an a half away. It was a night I will NEVER forget.
The RT breathing for our son
Malaki on life support
For the next three months Malaki lived at the hospital. Often it was touch and go. Will he make it through the next hour? What do we try next? His body became bloated and swollen. Test after test was performed. Genetics was called in. The infectious disease team was called in. He ran high fevers at night but they would disappear during the day. He had another surgery on his airway. Placing a trach came up over and over again. All hours of the day and night we were meeting and trying to figure out what to do next. We prayed, we cried, we held his hand and told him we love him and he is so strong and so brave.
God brought healing to Malaki
Our son was taken into surgery to remove the vent but came back with it still in. More waiting. More praying. Days later the surgeon tried it again. It took a bit but Malaki started breathing on his own with the assistance of the bipap machine. We moved out of the PICU to the complex care floor. Each day was uncertain as he moved forward but then took steps back. One night I awoke to a room flooded with people as the nurse had to call in a code and Malaki had to be taken back to the PICU.
Malaki finally improved enough to go home on oxygen and bipap. We had some short visits home with return trips back to the hospital until finally our ENT specialist performed a never before procedure on his airway. After this was completed Malaki was on the vent again but after a few weeks of recovering he was able to come home and has been home for 7 months now.
We don't know what the future holds for Malaki but we know he is God's child and he is loved very much by many. He has touched so many lives with his huge heart and big hugs. Malaki has a way of making each person feel like they are so special.
The Lord thy God in the midst of thee mighty;
he will save, he will rejoice over thee with joy;
he will rest in his love, he will joy over thee with singing.
Zephaniah 3:17
