Just had the head surgeon's nurse, Nadine, come out to meet w/ us. She said Noah is doing good; Dr. Wellons is plugging away. He is taking him time, and is very meticulous in doing his best to cut away from the blood vessels in the tumor. She said the bleeding is contained. So they'll keep going as far as they can, getting as much as they can until they have to stop (too much bleeding, etc.) John asked how they handle eating, etc. Nadine said they don't...they just push through it until the job is done. He shed tears of gratitude, and thanked her for what they do. She said Dr. Wellons goes for a run to energize before the surgery, and they all do the best they can do and give the rest to God!!! We both thanked Jesus for a team of believers. Nadine also told us, with tears in her eyes, that she explained to her daughter last night that Mom would have to leave early to help a sick little boy. Her daughter asked if they could pray for him and they did. God is good, and He has Noah in His hands!!!
John and I feel the covering of everyone's prayers, and we are SOOO blessed to be surround by such love and support. We praise God for you every minute. Thanks to all of you who have contacted us about Noah. Your prayers and support have been overwhelming. For all of you who have researched and offered advice about his burn - thank you so much! We still have no answer from the hospital. He is scheduled for another MRI in the morning. Pray for his protection.
Noah is in the O.R. presently. The nurse has contacted us and said he went to sleep just fine and the procedure is going well. They estimate a ten hour surgery. Pray the doctors and staff stay alert, strong, and don't succumb to fatigue. We will be contacted every 1.5 hours by the nurse for status updates. Jessica and I have a lot of emails to respond to. We have never experienced such an outpouring of concern and love from our friends and community and even people we have never met. I cannot thank all of you enough. We expect to be here for a while. The doctors have prepared us to expect to stay for weeks to months. We have a room at the Ronald McDonald house. This is an awesome place. If you go to the McDonalds restaurant and have the opportunity to drop some change in the collection box for the house - please do. There are so many families in the same situation as we are staying in this place. Everyone is so overwhelmed and in shock about the crisis surrounding their children that to think about lodging and laundry and food is just to much to handle. This place is an oasis - a God-send! As we find time we will try to respond to everyone's emails. Thank you for your patience. We also want to thank the Athens News Courier for the story on Noah. To know our community is praying for him is . . . . I have no words. As we know more we will update more Thanks for praying - This is going to make one great God story when it's all over! John David I (John) really hesitate to enter this part of the blog, but I need to vent - plead for help - ask for prayer - get advice. This morning, we arrived at 7:30 to the PICU and went in to see Noah before his MRI. The attending nurse was so sweet and helpful. We could tell she doesn’t do her job just to work, but that she really cared for Noah. As the time to take him to the MRI room drew near, she told us we could carry him and she would push his IV equipment and bed. We took the long walk down through hallways and elevators and arrived at the Imaging Center. We said goodbye to Noah as he cried in the arms of the attendants and we entered the waiting room. After several hours they told us we could go back to PICU waiting area as Noah woke up from sedation. While in the PICU waiting room a nurse came to us and asked us, "What happened to his arm? What was the sore from?" We had no knowledge of any sore. Noah's nurse in the PICU was questioned as well and said that he had no sores on him when they passed him off to MRI staff. We had spent time with Noah, examined him, changed him before the MRI and there were no sores on his body. It turns out that somehow from the time we handed him to the MRI staff to the time he went to recovery he received a 2nd to 3rd degree burn on his right arm near his IV. No one knows how it happened - no one knows when it happened - no one is taking responsibility - no one is admitting guilt. I watched a group of medical professionals from every area of medicine group together in a huddle 15 feet away from his bed and discuss it for some time - with no answers.
To say I am angry is an understatement. For those of you who know me well, you know I have a temper flaw. My wife is my help mate - with one look from her I had the accountability I needed not to react in my anger but to step back and try to look at the situation outside the anger. This morning before we saw Noah, I found myself very early in the book of Matthew chapters 5 - 7. I was reading the part Jesus spoke on forgiveness and loving your enemies; I didn’t know God was equipping me for the day. I am not saying I am an enemy of any staff member here at the hospital. I know they are doing their best. And I really like our doctors and nurses. But when your kid gets hurt that bad - your flesh (sin nature) wants to put someone’s head through a meat grinder (my brother gave me that quote). Paul wrote - "In Your anger, do not sin." God has given me the strength to keep my mouth shut and my wife has held back tears and frustration like a champion. She is a rock! We know that in all things, God works bad for good - we are waiting to see how this one works out. Please pray for Noah’s safety. The last thing he needs is another something in his body that hurts. Pray for this staff here at the hospital - pray for the equipment they use - pray for Jessica and I to walk, talk, and look like Jesus! As of right now the entire MRI unit at UAB is shut down. GE, the company that made the machine is doing a complete diagnostic. An investigation is being done throughout the hospital. We hope we have an answer to what happened soon. If you have any experience with or know someone who has received a burn injury from an MRI please contact me. Today Noah had an extensive M.R.I to look at his brain, brain stem and his spinal cord. What they found was hard to swallow. The neurosurgeon briefly spoke to us beside Noah's bed about the results, then asked us to follow him to the consultation room. We have never been in that room before - only seen it in the movies. The experience was like being in a dream. We all sat down as the doctor formed his hand into a fist and said, "The tumor in your son's brain is this big. It has pushed the left side of his brain into the right side of his skull." Jessica and I sat speechless as he began to explain the game plan for treatment, extraction, and the risks involved. This tumor has been growing for some time but has taken a more aggressive turn in the last few weeks. This explains why he hasn't been able to walk straight, keep his balance, or use his right hand. The tumor is pressing against his brain in every direction. Thankfully it has not intruded into the brain stem, which is why they are taking such strict precautions to monitor him in the PICU. If his condition gets worse, they will do emergency surgery to relieve the pressure.
Currently, Noah is scheduled for surgery on Tuesday. We have no idea what time. Until then, they are giving him treatments of steroids and other medications to cause the tumor to stop growing and decrease the swelling of the brain. He is eating more ice cream than what is allowed by law - at this point we could care less about getting what we want in his stomach. If he asks for it, he gets it. : ) He can still use his left hand. He can hold his juice cup and play with our faces. We have laughed a lot, hugged more, and kissed constantly. As bad as this situation is, we have had some great quality time together. We have met some great hospital staff and really like his nurses and doctors. We know that God orchestrated his transport down here and preordained those who are caring for him. We are in awe of Gods perfect timing. We are so completely overwhelmed and humbled by the outpouring of love and support from our friends. Words cannot express what your prayers and love have meant to us. Monday is going to be a long day of waiting; Tuesday will be the hardest day of our life. We know God works all things for good for those who love Him and are called according to His purpose. Noah is His. His life is in God's hands. We were reminded by good friends Saturday night that the disciples were in the boat in the storm and Jesus was asleep in the boat with them. He didn't bail out and had total faith to make it to the other side - so much so He took a nap during the worst part, when every one else was freaking out. In our storm - Jesus was in the Huntsville Hospital, the helicopter, the PICU and the consultation room. He will be in the O.R. as well. We aren't freaking out - but screaming at the storm "Peace be still!" More to come when we know - Thanks! John David I (John) really hesitate to enter this part of the blog, but I need to vent - plead for help - ask for prayer - get advice. This morning, we arrived at 7:30 to the PICU and went in to see Noah before his MRI. The attending nurse was so sweet and helpful. We could tell she doesn’t do her job just to work, but that she really cared for Noah. As the time to take him to the MRI room drew near, she told us we could carry him and she would push his IV equipment and bed. We took the long walk down through hallways and elevators and arrived at the Imaging Center. We said goodbye to Noah as he cried in the arms of the attendants and we entered the waiting room. After several hours they told us we could go back to PICU waiting area as Noah woke up from sedation. While in the PICU waiting room a nurse came to us and asked us, "What happened to his arm? What was the sore from?" We had no knowledge of any sore. Noah's nurse in the PICU was questioned as well and said that he had no sores on him when they passed him off to MRI staff. We had spent time with Noah, examined him, changed him before the MRI and there were no sores on his body. It turns out that somehow from the time we handed him to the MRI staff to the time he went to recovery he received a 2nd to 3rd degree burn on his right arm near his IV. No one knows how it happened - no one knows when it happened - no one is taking responsibility - no one is admitting guilt. I watched a group of medical professionals from every area of medicine group together in a huddle 15 feet away from his bed and discuss it for some time - with no answers.
To say I am angry is an understatement. For those of you who know me well, you know I have a temper flaw. My wife is my help mate - with one look from her I had the accountability I needed not to react in my anger but to step back and try to look at the situation outside the anger. This morning before we saw Noah, I found myself very early in the book of Matthew chapters 5 - 7. I was reading the part Jesus spoke on forgiveness and loving your enemies; I didn’t know God was equipping me for the day. I am not saying I am an enemy of any staff member here at the hospital. I know they are doing their best. And I really like our doctors and nurses. But when your kid gets hurt that bad - your flesh (sin nature) wants to put someone’s head through a meat grinder (my brother gave me that quote). Paul wrote - "In Your anger, do not sin." God has given me the strength to keep my mouth shut and my wife has held back tears and frustration like a champion. She is a rock! We know that in all things, God works bad for good - we are waiting to see how this one works out. Please pray for Noah’s safety. The last thing he needs is another something in his body that hurts. Pray for this staff here at the hospital - pray for the equipment they use - pray for Jessica and I to walk, talk, and look like Jesus! As of right now the entire MRI unit at UAB is shut down. GE, the company that made the machine is doing a complete diagnostic. An investigation is being done throughout the hospital. We hope we have an answer to what happened soon. If you have any experience with or know someone who has received a burn injury from an MRI please contact me. On the way to Birmingham John and I were emotional basket cases. We did have enough sanity to realize that freaking out would get us nowhere. We quoted scripture to ease our anxiousness and grief. John turned on 91.3 the Fix (thanks Mark Allen!) and every song we heard was about standing strong, trusting the Lord, hope....and we were encouraged. John reminded me of why Noah has his name. About 10 years ago, God impressed on his spirit to name his first born son Noah. He would be a righteous man in an unrighteousness generation, and lead many to Christ. He would live and not die. In believing that God has a great plan for Noah's life, I knew John and I had a big responsibility in raising him. Just about every night after Noah goes to bed, I would sneak into his room and pray for God's protection on him, for the Lord to bring him to Christ at a young age, for peace and the Holy Spirit to live in his heart, and for God to use him for His glory. God is answering my prayers - not in the way I expected or would prefer - but God is using Him. And healing Him. I also trust that Noah has peace in this surgery (which he's in as I type), and that Jesus is with Noah. I'm reminded that a couple of weeks ago Noah and I were heading into church for a Thanksgiving dinner we shared with our young adult bible study...we passed the big stained glass window with Jesus holding a baby, and other children scattered at his feet. He raised his hand to the window and started singing, "Bible, bible, bible!" (that's his version of Jesus loves me). I know that in Noah's sleep, Jesus is holding him, and singing "you are weak, but I am strong!"
Upon arrival at Children's we rushed to the PICU to meet our little guy. We spoke w/ one of the surgeons who will partner in Noah's surgery and were shown the ct scan from Huntsville. To be completely transparent - I was terrified. It looked so large, and so scary, and I was just so angry. Talk about emotionally drained. Then we were bombarded w/ questions from lots of different people. It was all really a blur. But I do remember we cried a lot, prayed alot, and John anointed Noah with oil Pastor Steve prayed over and sent with him.
"Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up" (James 5:13-15). Two of our Friendship Church brothers drove down and secured us a hotel room (since they kick us out of PICU after 2am) and made sure we had a hot dinner. Talk about walking out your faith and sharing the love of Christ. Even though we were beat up, we were loved on a lot more! Katie was assigned to Noah's room at HH on Saturday for the 7a-7p shift. She was very sweet, very respectful of us, just had a great spirit about her. When we found out he was being med-flighted to Birmingham, she came in to check on me, making sure I had eaten lunch, wanted to see how I was holding up. Katie's parents live in Birmingham, and we talked a little about the area surrounding Children's Hospital, and how to get there. As Noah was being prepared for the flight, Katie talked with my mom. She said, "I'm really not supposed to ask, but are you guys believers?" Mom shared with her our story, and Katie said she would have her brother, who is a pastor of a church near Birmingham, send out a prayer request for Noah to his congregation. She even offered to come visit us in the hospital when she came down for Thanksgiving. Thank you sweet nurse Katie for not just doing your job, but for encouraging us in the Lord, and sharing Noah's story with others.
Noah is a typical toddler. He loves to run, climb, slide, play in the dirt, and "drive" daddy's lawn mower. His favorite tv show is Sesame Street, and he adores Elmo. He is very strong-willed, and has been known to throw a tantrum or two! He has always been on track with every aspect of his development, until the beginning of November. I noticed that he acquired a limp on his right side. Several days later John mentioned that Noah had stopped running when he chased him around the house. As we noticed Noah becoming more unstable, falling more often, and walking into walls/doors, worry began to set in. On Monday 11/16/09 I took him to his pediatrician, suspecting he had an ear infection, which could possibly explain his problems. There was no infection, so we were told to come back in a week if the problems persisted. That Thursday I watched him play with children several months his junior and my heart began to break. He would wobble around the room with his eyes set on a particular toy, but before he could reach it another child would run and scoop it up. The frustration in his eyes was enough for me to realize something wasn't right. I scheduled an appointment with his doctor for the next day. Friday morning he woke up vomiting, and continued until we came to the doctors office. He was dehydrated so she had him admitted to Huntsville Hospital, and asked them to evaluate his leg also. Through several conversations with nurses and doctors John and I began to realize this was a much bigger problem than a stomach virus and an injured leg.
We thought Noah was going to be left-handed; he was beginning use that hand more and more. His right eye began to turn in slightly. And of course there was the issue with his leg not working as well. As we began to look back over the past few weeks we realized our normal, perfectly healthy baby boy had not been himself at all. When the doctor on call couldn't give us any answers she ordered a CT scan of his brain. You know that "gut-feeling" that something really bad was happening? That's when I got it. I interpret that feeling as the Holy Spirit trying to prepare me for the news that was coming. We waited and waited. The sweet nurse on call, Katie, came in and informed us Noah didn't need to eat or drink anything else. That was all she said. John and I assumed they needed to do an MRI which meant either, a) they couldn't get a good read of his brain w/ the CT or, b) they were able to read it and it was bad. We waited and waited some more. Family and friends had come and gone, and John, myself, Mimi, and sweet Noah were the ones present when we got the news. When the doctor pulls up a chair and looks like she's going to cry it's never a good sign. So I was as ready as I could be. "This is not good. The CT scan shows a mass on his brain. We need to get him to Birmingham as soon as possible." It was like something from a movie, or an out of body experience. From that moment on, we knew this was out of our control. We are weak, but He is strong, and His strength is made perfect in our weakness. To God be the glory. Noah had his first helicopter ride to Children's Hospital, with His angles following close beside. |
AuthorThese posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted. Archives
August 2014
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