Tuesday, July 8, 2014
Where do I begin? Purely exhausted doesn't seem to even be the words to discribe myself right now. So much to process, so much whirling around my head, so much to physically do, so much mental energy S.P.E.N.T! I can begin my saying some good things about our little Angel Boy! JoJo is doing pretty good. He is still only eating by his gtube. Seems to be a slow process to get him back up and running in that sense. But he is doing awesome in all other areas! We went to see his general ped today and the man almost cried because JoJo looked so good to him. He loves that JoJo is so inquisitive, happy, and that his breathing sounds amazing right now even with congestion. So overall , Josiah is doing well. Very happy and content. Crawls arounds and loves to play with his siblings. But I on the otherhand am still coming out of survival mode and my heart is still in shock that we almost lost him. I totally believe in our heavenly Father and trust his plan for our lives. June 20, 2014 will be a day I will never forget! One can believe and "trust" God's will for our lives. I get that, I really do. If you were to ask me beforw June 20, "do you want God's will for your life?" "Of course" would have been my reply. And it still would be. But when I was facing the reality that God's will may be to take my son right now in this very moment in time. The son I have fought for for 2 years now. The son I did not carry in my womb but have deeply fallen in love with beyond that need of carrying him to be His mother. The son whom Iv'e strugged with because he is "hard" to care for. The son I just started to get a handle on and learn how to properly care for his special needs. Yes, that son. I never imagined myself begging my Lord to give me a second chance with this boy. To let me keep him a little longer for I just got a handle on this special needs thing. "Lord, I begged him, I know if it's your will he doesn't make it tonight, I know and believe Y.O.U alone will be our strength and will carry us through; but Lord I'm begging you, please save my son!" Tjat was the prayer I kept praying that night. It was a horrific day I will never forget. A good friend of ours from wausau stayed with JoJo on the night of June 19 at the hospital. I arrived around 6 am and my friend said that he didnt sleep well and seemed to be in pain. Josiah kept dry-heaving and still couldn't tokerate feeds or his tube even clamped. He was still losing alot of discharge from his gtube. The color of the discharge kept going from green to clear to massive amounts of green in the early hours of friday morning. Around 8 am, a team of surgeons came in the room and said maybe it's time to see if there is a bowel obstruction or if it's just his puesdo obstruction from his MECP2 duplication syndrome. The surgeon said they would do a CT scan to determineif there was a blockage or an abscess. We said that sounds good, lets check. They wanted an xray first. They took him down and brought him back. Something didnt seem right, he was just lying there, not moving much at all. I ran to get the nurse,"what did you give him,"I asked. She said, "nothing, they just did an x-ray." What do you mean nothing, this isn't nothing, my boy looks sedated. Something isn't right". She assured me that he was fine. His tummy was huge and he hadn't peed in over half a day. The nurse said that they were going to put in another foley as she continued to reassure me that he was fine. His heartrate was staying around 180 and he began to look (a image that is burned into my memory tuat I will never forget) pasty white with deep sunk black eyes. My baby boy looked dead. I have seen dead and he looked it! I kept asking the nurse, "what is going on, why does he look like that." "You're here because He's sick, he'll be fine," she replied again. "Excuse me, I'm not here because he is sick; I'm here because he had a fundoplication and g tube placed. He wasn't sick yesterday! What is wrong with him, something is wrong!" At thos point, he started peeing blood. At this point, SuperDaddy and I started demanding answers. They still didn't do a CT scan. They were still taking X-Rays. The nurse and staff kept reassuring us that he was fine. They told us they think he may have an infection because his labs came back with his WBC being 30,0000. Apparently, that is very high. My son has a weakened immune system and needs antibiortics to fight major things. They kept arguing that they cannot give antibiotics untik they find the source of the infection. I kept telling them to start a broad antibiotic immeadtly, I don't live under a rock, I know it can be done, I want it started. They refused to listen to me. At 5:00pm the nurse comes in and says that they are going to wait until the morning to do the CT Scan as everyone went home for the night. I was certain that somethibg was wrong with my boy and I wasn't going to let anyone rest until we found answers for him. I walked out into the hall and into the nursing station and politely and firmly said, "you have an on-call team, I want them called immeadelty and that CT scan is happening tonight." At 7pm he was taken into the CT scan and we didn't get to see him until 10:30. He went into the OR for an emergency surgery becuase our little Angel was fighting for his life for he had a bowel obstruction that had been there for awhile not just hours. 50 cms of his small intestines were swallowed up by his large intestines! As we sat i that dark waiting room, I begged my Lord to save my son, and through the hands of the surgeon who was on call that night, my Lord, spared my son's life and let me be his mother a little bit longer yet. It is a prevlidge to be his mother, and I don't take that calling lightly. God has given me a second chance with JoJo and I want to make the best of it with God's help of course ;) We are incredibly thankful to have our boy with still with us. Yes, he has special needs, yes he has a feeding tube, yes, we know he may never walj or utter a real word, and yes we eveb know that his life expectancy is at best 25 years; but we are incredibly blessed to have Little JoJo in our lives as he teaches us how to humble ourselves before the Lord and others. To say, I can't do this alone; and seek God's family to rally behind us and care for our Little Angel together as a community, as a whole body of Christ. We each can learn so much from this little Angel. We just have to be willing to learn. I asked my four yearold daughter what she loved most about her brother JoJo, and she replied without skipping a beat, "I love JoJo's special needs!" Isn't that the truth. I marval at how God crafted the mind of a child. Thank you Lord tor the gift of our children. Thank you for placing JoJo in our lives. Thank you for sending Christto redeem us. Thank you for your unfailing love. Thank you for never forsaking us.
June 20, 2014 in and of itself is emtiobally exhausting to live through and now to process. I am started to leave survival mode of the hospital and am grieving the loss of a month with my other kiddos and family. I lost a month of time with then. The were happily together most of the time at their grandparents house with wonderful sitters from church to watch them when Grandma was working. They enjoyed themselves but missed their family. Once we all got back home and together, they showed how much they missed us. I can't leave the room without ibe freaking out that I'm gone. Isaiah has screamed our in his sleep for Mommy. They cry if I'm in the bathroom and they can't find me. They aren't use to not having mommy. I want routine. Gotta run