My Journal--May 22-July 16, 1997
May 22, 1997
I can't believe this is happening? Why God, why my little boy? He's only seven and has never done anything to hurt anyone. What have I done, is this some sort of punishment? I just don't understand, why? I should have been there, if I had been there it wouldn't have happened.
May 23, 1997
He's so small and all those tubes and lines. He's alive! Thank God there was nothing more wrong. I just want to pick him up and hold him. To hear his voice.
pm--He's still squeezing our hands and responding. I just keep talking to him. Somehow, I just can't pray right now. It's real, but I still can't believe it.
May 24, 1997
7:30 am--Everything is so black right now. A stroke? Brain damage, I don't know if I'm going to be able to handle this. Despair is all I feel right now. They are going to put a "bolt" into his head. They are praying no bleeding will occur. It's supposed to help him and keep a monitor on his intra cranial pressure. The doctors are telling us they don't know the time frame of his recovery. It was only supposed to be a week! Now it could be weeks!! I'm afraid am I still going to lose him, after all of this?
The shunt went in fine no bleeding and the swelling wasn't so extensive that they can actually monitor the ICP's now. The Cat Scans show that the swelling and not a bleeder caused the stroke. It's in a strange place though. The doctors are surprised it's in the back of the mid brain and not in the brain stem. Charles' ICP's keep going up. The doctors explained that the normal range for his age is around 12-15, his are in the upper 20's and low 30's. Every once in awhile the monitor's alarm.
May 25, 1997
3:20 am--God where are you? I feel so totally alone. They are putting him into a coma, on purpose! His ICP's are at 54 and they are not coming down. You didn't let him live this long to let me lose him now did You? God please, he's my baby. Okay, God! He's in Your hands. If he's not going to get better, please take him now. I can't handle this any more. If You're going to let me keep him, then You're going to have to let me know! You're going to have to give me the strength to get through whatever is ahead.
Thank you God. I know he's going to make it. His Dad is not dealing with this well. All he does when he's in the room is watch that monitor. I keep trying to tell him that You're in control that I know because of You Charles will be okay. He just keeps shutting me out. I can't believe the outpouring from the church and from the others from Holland. Cim and Asa have been up here every day! Pastor David and Elwyn, thank You for them. Just everyone. They are my comfort and support right now.
Mom and Gail finally made it in. They drove straight through. It's hard seeing them so upset. You're such a comfort to me Lord. Instead of them comforting me, I'm reaching out and comforting them. They just can't believe I'm so upbeat and positive. You and I both know how weak I really am without You!
May 26, 1997
I actually slept for 3 hours straight! I woke up this morning with a room full of doctors surrounding your bed. Your ventilator alarm had went off several times throughout the night. Your oxygen saturation rates kept dropping. Anesthesiology was already here, they're going to replace your ventilator tube with a different one. This one will be the same type they use on adults.
Thank you God it worked. Your saturation rates are at 98-100% now. Just another mini crisis. We met the Mom of a little boy next door that is in a similar condition. The doctors want to do a profusion brain scan on the both of you. Should be done some time tomorrow.
May 27, 1997
Lord thank you for protecting my family. Buddy you missed all the excitement. We had tornado warnings all over the place. Jarrell was hit really bad again. There is a little girl here that was in the tornado. Lost her Dad, but her Mom survived, she's in SICU. We were bunkered in here. At least all my family was here. At one point they said the tornado was within 5 miles of Holland. One of the Doctor's had a boat at the marina at Morgan's Point. Everyone from church is okay.
During the middle of all of the excitement they did your brain profusion scan. Dr. Aleta came in and told us that the test showed you still had some blood flow into the area of the brain where the stroke was. They don't understand it, basically because it's all supposed to be dead tissue. But we know Who is in control don't we!?
May 29, 1997
Lord I want my son back. I just want to hear him say Mom. I want to hold him close and feel him hug me. It's been a week now. Lord, I feel so all alone right now. Where is the peace and strength I had yesterday? I feel like I'm drowning right now.
I started searching through my Bible I found a bulletin from an earlier service. You see God had started preparing me for this before hand. Pastor Elwyn had been preaching on "God works the night shift!" The Night Shift, it doesn't have to be at night, just the darkest times in our lives. On the back of this bulletin was a devotion that Melba had wrote. The verse she used was Isaiah 43:2.
Isaiah 43:2--When you pass through the waters, I will be with you, and through the rivers, they will not overwhelm you. When you walk through the fire, you will not be burned or even scorched, nor will the flame kindle upon you.
I realized that even when Israel was disobedient, that You still loved them and protected them. I was feeling so overwhelmed by everything and Your Words reassured me that You wouldn't allow this to destroy me and my family!
May 30, 1997
You've got to love the staff here. They actually drew a picture of a yellow submarine and taped it to Dr. Hardy's computer. He's back today. I've already been handed a 20cc syringe full of water to squirt him. Your Dad isn't very pleased, but you know Mom and squirt guns! You should have seen it Charles!! I was dozing in the chair by your bed and I hear footsteps. Look up and Dr. Hardy is checking you over. I took the syringe and unloaded it right into the middle of his tie. He swung around looking out the door!! He thought someone else had got him. I just started giggling. I told him the staff had alerted me and provided me with my defense.
Samantha and Caitlin went home with Grandma Morgan and Aunt Gail today. It was hard telling them bye. It's the best thing though, for them and me right now. I don't want them to feel neglected, but you're my only concern right now. I've got to be strong for you and your Dad. I already miss them!
June 2, 1997
Dad went back to work today. Thank goodness. He's been driving me crazy when he watches the monitors constantly. They've been draining off cerebral fluid when the ICP's get too high. I've actually got used to the alarms going off and the constant monitoring. You've been on as many as 12 infusion pumps at once. Every one of them a different medication. Some of them are combined.
Kim, your respiratory therapist, says your lungs are doing great! No pneumonia trying to set in. Another blessing from God. They've warned us that pneumonia is very common after being on the ventilator for so long.
June 5, 1997
I've been doing a lot of reading and cross-stitch. The doctors keep telling me to get some sleep as I'll need it when you wake up. Your ICP's still keep going up and down. Days are getting pretty routine now. They've found negative gram rods in the cerebral fluid they've been releasing. This means possibility of an infection beginning. The doctors say it's to be expected, the shunt that's helping with controlling your intracranial pressure is causing the problem. They've been talking about the possibility of having to remove it. The doctors are trying some really high-powered drugs to control it. Gentamycin and Mirapentum are two of them. The fear is that if they remove the shunt and try to place it on the left side, you'll have more bleeding into that side of your brain.
June 10, 1997
They've decided to take you down and have a cat scan, again. If the swelling has subsided enough they're going to attempt to take the shunt out and put a new monitoring device in. They think the other one is not reading correctly.
I knew something was up. They had wheeled you to CT and then there was a phone call and both Dr. Hardy and Dr. Wick took off running to CT. The nurses weren't saying anything. I knew something had gone wrong, I just didn't know what. I started by stripping your bed and remaking it. The nurses started to help, but then left me alone. They knew I had to be busy. When you finally got back to the room, Rhonda Zellmer explained what had happened. For no apparent reason, during transport down to CT your blood pressure started crashing. They were able to stabilize it and the CT indicates that the swelling has subsided some, not a lot, but some.
I called your Dad at work and he's on his way. Dr. Harris decided they are going to replace the shunt. Cheryl met me in the hall and prayed with me. It only took 15 minutes once they started, but it seemed like an hour. Your Dad got here a few minutes after the doctors came out. Dr. Harris' resident was smiling ear to ear, so I knew it went well. The shunt went in fine in the exact spot of the other one. Praise God.
Your ICP's are down between 14-17!!! The other shunt had some tissue attached to the sensor, which was giving false readings. They are going to wait at least 24 hours til your ICP's remain low and then take you off the drugs that are keeping you asleep.
June 11, 1997
They stopped the Pentobarbital today at 2 p.m.! All the doctors and nurses are very cautious and explained that you may not show any signs of waking up for the next 10-14 days. This is due to the high dosage of the pentobarbital you were on. I see the light at the end of the tunnel!!
June 12, 1997
YOU OPENED YOUR EYES!! Less than 15 hours after taking you off the pentabarb you've opened your eyes!! The doctors couldn't believe it, or the nurses. You're still not "awake" but you opened them. You're starting to respond to us.
June 13, 1997
Charles is responding more and more. He is now squeezing our hand with his left hand, and actually wiggling his toes. He's not really "awake" but his eyes are remaining open longer. He's still on the morphine and Valium. He does come into full consciousness every once in a while. You can tell by his eyes. He is still on the respirator, but they've started taking the IV's out. He's down to 5 infusion pumps now. They're going to take out your two femoral lines and put in one subclavian line! They even took out your arterial line in your right wrist.
I helped James, your nurse, give you your bath. We even washed your hair, as best we could. You still had the blood and everything else in your hair from the day of the accident. You look like a different kid now. They're discussing taking off the C-collar, but we have to wait for Orthopedics to okay it.
June 14, 1997
You actually "tracked" a balloon with your eyes. I was so excited. The nurses of course thought it was wishful thinking until you did it again. Every little positive sign brings me such joy!
June 17, 1997
They are decreasing the oxygen starting today. The doctors want to wean you off the respirator. They also took the C-collar off. When they did they found a huge area on the back of your hair scabbed over. They thought it was just matted hair until they started cleaning the back of your head. It's slowly peeling off already. I can't wait til you're off that respirator and I can hold you!
June 19, 1997
You're breathing over the respirator enough they're starting to talk about taking you off it!! Hooray!!! You've begun responding more. I'll catch you watching tv late at night. Your eyes focused in on the tv and the noise. More and more you're coming into full consciousness. They've started decreasing your morphine and Valium dosages. This should help.
June 21, 1997
They've removed the respirator this morning!! You started whining and crying softly, we actually could make out the words, It hurts? We were asking you what hurts. When I guessed your arm, you said uh huh and then the doctors took over. I couldn't help but cry tears of joy. It was very weak and barely intelligible, but you were talking. You immediately went back to sleep because of the meds they put into your IV. I went on down to lunch while your Dad stayed with you. When I got back, Pastor Elwyn was there and your eyes were open. Wide open, fully awake and conscious. I walked up to you and looked at you and called you a "toothead"!! A miracle happened, you started giggling and then laughing. All the nurses and doctors in PICU came in. We were crying and laughing at the same time. That sound was the music of angels to me.
June 24, 1997
We're still having problems with your NG tube. Your stomach is not getting rid of its fluids, ect., fast enough. It's due to you lost weight and didn't have any to lose. You really look like a holocaust survivor. Knobby knees and all your ribs showing, but what a glorious smile on your face. It looks like we might be leaving PICU in the next couple of days.
June 25, 1998
4 ½ weeks and we're now leaving PICU for the pediatric floor. You'll move to rehab once you have the feeding and NG tubes removed.
Well no need to worry about the NG tube being removed. I moved the guardrail down to sit you up and one of the nurses had taped the tube to the rail. Whipped it out really quick. They decided to leave it out and see how you did. Well after you'd eat, you'd throw up. So we had to keep you on your side. Dr. Custer said surgery was not needed to correct it, just putting weight on your old skinny self!!
June 30, 1997
Finally in Rehab. I'm not going into details, but let's just say I'm glad we're off the pediatrics floor. I went back to work June 26th! Only half days right now. I finally went home for the first time. It was so strange, actually going home. I hadn't driven more than a half mile from the hospital since the day of the accident. Your Dad started staying nights, I would work mornings nd then pick up the girls then relieve your Dad at 1pm and he'd go to work.
July 4, 1997
We got you a day pass. We decided to take you to Golden Corral for lunch and then we went for a movie. You saw Batman and Mr. Freeze!! You were pretty worn out so we brought you back to the hospital. Dad and the girls went home. And we made plans for Saturday and Sunday. You're still wobbly, but you're walking.
We took you home for the first time. It wasn't such a great idea, you didn't want to come back to the hospital. Then we went to Uncle Jim and Aunt Janice's house. Aunt Sammie got in the pool with you and you had a blast.
Sunday, I got you all ready and we headed for church. Didn't go to Sunday school but we made it to church. Everyone was so excited to see you! You were pretty overwhelmed by it all. So many people had prayed for you and with us during the entire time. From the minute we got the call until you walked in that morning and still to this day. It was a time of celebration and rejoicing.
So much therapy, Occupational, Speech and Physical therapy. Every day you went through it. Many times you didn't want to but they knew how to motivate your. JR and her staff in Physical therapy had you playing basketball and then if you did what you were supposed to in the morning, then in the afternoon session you got to swim. I even joined you a couple of times. You were still pretty stiff, but you learned to crawl, stand and even tried to run a bit. You definitely learned how to cheat at kick ball.!!
July 16, 1997
We've been released! I praise God for everything He's done through Doctors and Nurses, but it's wonderful to be going home. We still have therapy 3x's a week and a multitude of problems to overcome, but that's what you are my son is an overcomer.
I'll never understand exactly why the accident occurred. A friend of mine, Boni Jacobs, made the comment that God doesn't always keep us from suffering the consequences of our actions. She explained that Charles chose, unconsciously or not, to cross a busy highway on his bike and the accident occurred. The unique thing is that God showed us how He can use anything to bring glory to Him!
A friend of mine from Canada called shortly after Charles' accident and left the message that she had broke her silence with God to pray for Charles.
I was able to share and pray with the mother of little Eric.
When all things were out of my control, the peace and strength God gave me showed through!! They saw what God did in my life.
What a witness to the doctors and nurses. Charles is a walking and talking miracle. Not only did he recover in areas where they were skeptical he wouldn't. He recovered so quickly that there is only one explanation. God!!
New friendships were developed that never would have been.
Recently I was asked by Dr. Wick in PICU to talk to the parents of a 7 year old little girl who had been struck by a car. She too had similar injuries as Charles. Charles and I went up there to visit them as well. It seemed to help Courtney's parents to know that despite the circumstances that God can and does work miracles. They let me pray with them and little Courtney is now out of PICU! Praise God!!
I kept this journal so that Charles could look back and know all that he went through during those weeks he was "asleep". Friends have urged me to put it "out there" for all to see as a testament to God's goodness and greatness. I hope in some small way this will help someone who needs the encouragement.
I believe without a doubt that the answered prayers of family, our church, community and friends from around the world are the reason Charles is not only alive, but walking, running, skipping and playing ball today! I'll never forget your support and love throughout this turbulent time in our lives. Again thank you and may God bless you above and beyond your wildest expectations. Cim and Asa you'll never know how much you touched our lives. I love you both very much!
I am because HE is!
Laura L. Parker