While were at duPont Hospital with Aaron, so much was going on at our house.
Our oldest two do not live at home anymore and work full time. Our third child was at summer camp the week we left, and volenteering in the kitchen the following week at the camp. This left our 14yo daughter at home in charge of 5 children, ages 10 and under. If I were only running to the store to pick up bread and milk, this would not have been a problem. But we had no idea how long we would be gone, and it stretched into 1 1/2wks.
The night that Aaron went to duPont, our pastor came to the hospital to be with Gene and I. I found out later that his wife and daughter came to our house to be with the rest of the children.
The next day, the church sent out an email about Aaron's condition. The church was flooded with phone calls. People wanted to know how they could help! The church secretary organized a few days of meals and care for the children. At one point, they had to put a hold on the meals, our refridgerator was bursting at the seams with food. (Of course, Gene and I, and Bethany, were not home, and our biggest eater, Aaron, was not home to eat.)
When the church secretary went on vacation, she enlisted the help of one of the other ladies. This dear lady has five children of her own. Yet she spent much time at our house, mowing the lawn, doing laundry, cleaning, running errands etc. Her oldest daughter spent a couple nights to help with the children.
My children were not alone at night, married women gave up time with their husbands to sleep here on our sofa. Single young ladies gave up their own time to care for my children.
One family came and took my children to their home for the day. They rode horses, and played games. Not only were my children having their basic needs met, they were being loved, and shown fun times.
When I got home, there was a schedule, written in crayon, on my refridgerator door. It kept Sarah informed who was bringing a meal, and who was coming to spend the day and the night. Someone must have known how Sarah likes to be on top of things:) I thought it amusing that it was written in crayon, as that is often all I can find to write with in a hurry at my house.
What a blessing! I praise God for each and every person in our church family that ministered to us. Thank-you Timberline Church!
Wednesday, August 24, 2011
Tuesday, August 23, 2011
Before Leaving the Hospital
Remember our joke about Aaron arm wrestling a med student?
Well, on our final day at the hospital, we saw one of the PICU doctors in the cafeteria. We laughed that he needed to come up to the peds unit today, or he would miss his chance. The doctor said she would tell him when she got back up to the unit.
A couple hours later, three men came into Aaron's room, one was the med student. He told Aaron, "I hear you've been talking trash". His two friends, residents, wanted Aaron to stand next to the med student to compare height.
I wanted them to get into position, to pose for an arm wrestling picture. But men cannot stop themselves when they are in this position, even 11yo pre-men:) The student did not expect Aaron to be so strong. He told Aaron he will never live it down that an 11yo, who was recovering from a life threatening illness, beat him!! I wonder how many times his friends showed their cell phone videos of the match!
One of the doctors was there the evening Aaron arrived at the hospital, and was involved in his care in those early hours. Gene and I thanked him for what he did to make it possible for us to be taking Aaron home with us again.
Well, on our final day at the hospital, we saw one of the PICU doctors in the cafeteria. We laughed that he needed to come up to the peds unit today, or he would miss his chance. The doctor said she would tell him when she got back up to the unit.
A couple hours later, three men came into Aaron's room, one was the med student. He told Aaron, "I hear you've been talking trash". His two friends, residents, wanted Aaron to stand next to the med student to compare height.
I wanted them to get into position, to pose for an arm wrestling picture. But men cannot stop themselves when they are in this position, even 11yo pre-men:) The student did not expect Aaron to be so strong. He told Aaron he will never live it down that an 11yo, who was recovering from a life threatening illness, beat him!! I wonder how many times his friends showed their cell phone videos of the match!
One of the doctors was there the evening Aaron arrived at the hospital, and was involved in his care in those early hours. Gene and I thanked him for what he did to make it possible for us to be taking Aaron home with us again.
Almost There!
After Aaron's cardiac cath, he was hungry. He was able to advance quickly to a light solid diet. Only some gagging, but no vomitting. Praise God, we had not lost any of our progress.
The next day, the big concern about his activity level was again expressed by the doctors. I pointed out that the PT demanded he not be gotten out of bed, and that she needed to be set straight about the plan. Gene and I also decided the Play Station was not helpful to Aaron, and told them to take it away. Aaron was too comfortable, he did not feel the need to get out of bed.
When the PT came in, she wanted to take Aaron to the therapy room. She said she was thinking about putting him on the tilt table to figure out why he was dizzy. In my opinion, his dizziness was from lying in bed, and Gene and I had determined to start pushing him. We cleared it with the cardiologist, and began. We had him walking the hallway, and sitting in a chair. Amazing the improvement we saw. He was still very weak, and still needed a lot of rest and assistance. But he was going in the right direction.
By the end of the day, they decided to move Aaron to a regular pediatric floor. The diagnostic specialist would now be in charge of his care. His big concern was getting him eating and drinking more, and getting him active. Gene and I continued to push Aaron.
That evening, the neurologist came in to see Aaron. After examining him, and playing some memory games, he determined that Aaron did not have any impairments. He was a bit sluggish with his replies, but nothing that time would not take care of. What happened two nights prior was not concerning to him. He declared he did not expect Aaron to be doing as well as he was. He felt that after Aaron was home, in his own environment, he would be fine. Yes! And that is exactly where we wanted to be! Home!!
The next day, 10 days after this nightmare had begun, we were going home! The day they took Aaron off the vent, I told the social worker that Aaron would not need medical equipment, I was believing for a complete healing. In fact, I beleived he would walk out of that hospital, completely healed! The day Aaron was discharged, Aaron walked out of the hospital! He did not go in a wheel chair, he walked! His heart and kidneys completely healed!
God is Good!!
The next day, the big concern about his activity level was again expressed by the doctors. I pointed out that the PT demanded he not be gotten out of bed, and that she needed to be set straight about the plan. Gene and I also decided the Play Station was not helpful to Aaron, and told them to take it away. Aaron was too comfortable, he did not feel the need to get out of bed.
When the PT came in, she wanted to take Aaron to the therapy room. She said she was thinking about putting him on the tilt table to figure out why he was dizzy. In my opinion, his dizziness was from lying in bed, and Gene and I had determined to start pushing him. We cleared it with the cardiologist, and began. We had him walking the hallway, and sitting in a chair. Amazing the improvement we saw. He was still very weak, and still needed a lot of rest and assistance. But he was going in the right direction.
By the end of the day, they decided to move Aaron to a regular pediatric floor. The diagnostic specialist would now be in charge of his care. His big concern was getting him eating and drinking more, and getting him active. Gene and I continued to push Aaron.
That evening, the neurologist came in to see Aaron. After examining him, and playing some memory games, he determined that Aaron did not have any impairments. He was a bit sluggish with his replies, but nothing that time would not take care of. What happened two nights prior was not concerning to him. He declared he did not expect Aaron to be doing as well as he was. He felt that after Aaron was home, in his own environment, he would be fine. Yes! And that is exactly where we wanted to be! Home!!
The next day, 10 days after this nightmare had begun, we were going home! The day they took Aaron off the vent, I told the social worker that Aaron would not need medical equipment, I was believing for a complete healing. In fact, I beleived he would walk out of that hospital, completely healed! The day Aaron was discharged, Aaron walked out of the hospital! He did not go in a wheel chair, he walked! His heart and kidneys completely healed!
God is Good!!
Cardiac Step Down Unit
Monday morning, the nurses informed us they were moving Aaron to the cardiac step down unit. He no longer needed the care of the PICU. He only needed monitoring, which could be done on the cardiac unit. What a time of rejoicing!
Before the move could take place, Aaron developed high blood pressure. When it went up to 180/110, they gave him medication in his IV, to bring it down. They assured me this would not interfere with the move, as they were quite capable of handling high blood pressure in the cardiac unit.
The move brought good changes in the accomadtions for me. I now had a private bathroom, and did not need to use the one in the hallway. I had a shower, and did not need to go to the third floor to the Parent Resource Center. There was also a washer and dryer on the unit.
A lady came by to bring things to keep Aaron entertained. She brought in a Play Station unit, and games, as well as some Lego kits. Aaron was feeling much perkier, esp. with the chance to play video games.
The cardiologist, who specializes in the electrophysiology of the heart, came in to see Aaron. He said he wanted Aaron out of bed and sitting in a chair. He did not want him to develope an atelectasis from laying in bed.
Right after the cardiologist left the room, the physical therapist came in, and declared she did not want him out of bed. She was not comfortable with the dizziness he was experiencing. Very frustrating!
Aaron continued to use the potty chair, but was in the bed the rest of the day. His eating was still going rough. He continued to have pain when he would eat, and then he would vomit. The infectious disease doctor came in and said he would order something for his tummy.
Yet, hours later, we still did not see anything ordered. When I went to the nurses desk and asked the nurse practitioner, she got defensive, and said she had not heard any complaints of belly pain before. I walked away, rather than get into an argument with her.
The cardiologist came into the room to discuss the misunderstanding. I told him I was frustrated because one person will tell us one thing, and the next will say something completely different. Everyone seemed to agree that Aaron's poor oral intake was slowing his recovery, yet no one would address the reason why his intake was poor. If a child has pain and vomitting when they eat, they will not want to eat.
The cardiologist came up with a plan. He wanted Aaron to try to eat, when the pain started, he was to be given some Mylanta. If that took care of the pain, then he felt certain it was erosion of the esophagus, due to the vomitting and the NG tube. At this point, he would order Carafate to coat and heal the esophagus. It worked well. Now he could begin to eat and get his strength back.
In the process of our descussion regarding Aaron's struggle with food, the cardiologist informed us that the cardiac arrest was, in his opinion, related to the anesthesia, Propofal, they had given him in the PICU! Unbelievable! When I told him I had asked if that had been the cause, they denied it, said it would have happened right away, not 15 minutes after it was started. The cardiologist explained that in certain types of cardiac rhythms, propofal can cause cardiac arrest, asystole. It is incredibly rare, less than 1 in 100,000. So rare, it is not taught to anesthesiolgists, or even to cardiologists. Usually, it is only electrophysiologists, like himself, who know about this.
I was stunned, to say the least! The cardiologist told us that when the Lyme tests came back, he would be able to tell us more. If they were negative, he would lean more toward the Propofal as the cause for the cardiac arrest.
Tuesday morning, the Lyme tests came back negative. We still had no answers as to why our son had gone into renal failure. We had a possible reason as to they the cardiac arrest, even though that was not a definate, just a possibility. The cardiologist ordered a consult with a diagnostic specialist, sort of their version of Dr. House. He was very nice, though.
The diagnostic specialist could not give us any definate answers either. He visited with Aaron twice on Tuesday, looked over the tests, ect. yet could not say for certain what had caused Aaron to be so sick. With Lyme being lower on the probable list, (it still could be a possiblity, and will be retested soon), he was thinking toward toxins.
After such a stress-filled day, I needed out of there. I started walking, and did not stop til I was outside, sitting on the far side of the hospital, leaning up against a huge boulder, and crying. I could not deal with the roller coaster any more. The not knowing what had almost taken the life of our son! I sat there for a long time. If the cardiac arrest was caused by the anesthesia, how could I ever go through another one of our children needing anethesia? how was I going to ever let Dr. McManaway do another exam under anesthesia on Josh? what about when Josh needed surgery for gluacoma in the future? This was affecting the future medical care of all my children!
When I went back in, Gene informed me the cardiologist had been in. He was doing a cardiac cath with EP studies on Aaron the next morning! My fears of anesthesia were going to be faced sooner, as opposed to later!!
It was a very sleepless night for me. During the night, Aaron was referring to himself as "he" and "him", instead of "I" and "me". I felt very disheartened, not only was he going to have to risk anesthesia again, he was showing signs of brain damage!
The next morning, the anesthesiologist came in to explain what he was going to do. I told him "no" he could not use Propofal! He needed to use another medication! I was so distressed, I could not sign the consent forms. When the cardiologist came in, he said they would NOT be using Propofal. But...he wanted to give him a very small dose of it, to see if he had any reaction. He assued me Aaron was going to perfectly safe, nothing bad was would happen to him. (Hmmm, seems I heard that before, on the ride to duPont Hospital!) Another consent form I could not sign. Gene signed the consents, the first he ever has done that with any of our children.
The cardiac cath went well. The cardiologist said had he not known Aaron had been in cardiac arrest 1 week prior, he would not have been able to tell by the look and function of his heart. Praise God!!
After the anguish of the cardiac cath, I was glad we had gone ahead with it. Now I could rest assured Aaron's heart was fine. What a relief!
A visit from Santa in July.
Rudolph! Can you tell Aaron is feeling better in this picture?
Before the move could take place, Aaron developed high blood pressure. When it went up to 180/110, they gave him medication in his IV, to bring it down. They assured me this would not interfere with the move, as they were quite capable of handling high blood pressure in the cardiac unit.
The move brought good changes in the accomadtions for me. I now had a private bathroom, and did not need to use the one in the hallway. I had a shower, and did not need to go to the third floor to the Parent Resource Center. There was also a washer and dryer on the unit.
A lady came by to bring things to keep Aaron entertained. She brought in a Play Station unit, and games, as well as some Lego kits. Aaron was feeling much perkier, esp. with the chance to play video games.
The cardiologist, who specializes in the electrophysiology of the heart, came in to see Aaron. He said he wanted Aaron out of bed and sitting in a chair. He did not want him to develope an atelectasis from laying in bed.
Right after the cardiologist left the room, the physical therapist came in, and declared she did not want him out of bed. She was not comfortable with the dizziness he was experiencing. Very frustrating!
Aaron continued to use the potty chair, but was in the bed the rest of the day. His eating was still going rough. He continued to have pain when he would eat, and then he would vomit. The infectious disease doctor came in and said he would order something for his tummy.
Yet, hours later, we still did not see anything ordered. When I went to the nurses desk and asked the nurse practitioner, she got defensive, and said she had not heard any complaints of belly pain before. I walked away, rather than get into an argument with her.
The cardiologist came into the room to discuss the misunderstanding. I told him I was frustrated because one person will tell us one thing, and the next will say something completely different. Everyone seemed to agree that Aaron's poor oral intake was slowing his recovery, yet no one would address the reason why his intake was poor. If a child has pain and vomitting when they eat, they will not want to eat.
The cardiologist came up with a plan. He wanted Aaron to try to eat, when the pain started, he was to be given some Mylanta. If that took care of the pain, then he felt certain it was erosion of the esophagus, due to the vomitting and the NG tube. At this point, he would order Carafate to coat and heal the esophagus. It worked well. Now he could begin to eat and get his strength back.
In the process of our descussion regarding Aaron's struggle with food, the cardiologist informed us that the cardiac arrest was, in his opinion, related to the anesthesia, Propofal, they had given him in the PICU! Unbelievable! When I told him I had asked if that had been the cause, they denied it, said it would have happened right away, not 15 minutes after it was started. The cardiologist explained that in certain types of cardiac rhythms, propofal can cause cardiac arrest, asystole. It is incredibly rare, less than 1 in 100,000. So rare, it is not taught to anesthesiolgists, or even to cardiologists. Usually, it is only electrophysiologists, like himself, who know about this.
I was stunned, to say the least! The cardiologist told us that when the Lyme tests came back, he would be able to tell us more. If they were negative, he would lean more toward the Propofal as the cause for the cardiac arrest.
Tuesday morning, the Lyme tests came back negative. We still had no answers as to why our son had gone into renal failure. We had a possible reason as to they the cardiac arrest, even though that was not a definate, just a possibility. The cardiologist ordered a consult with a diagnostic specialist, sort of their version of Dr. House. He was very nice, though.
The diagnostic specialist could not give us any definate answers either. He visited with Aaron twice on Tuesday, looked over the tests, ect. yet could not say for certain what had caused Aaron to be so sick. With Lyme being lower on the probable list, (it still could be a possiblity, and will be retested soon), he was thinking toward toxins.
After such a stress-filled day, I needed out of there. I started walking, and did not stop til I was outside, sitting on the far side of the hospital, leaning up against a huge boulder, and crying. I could not deal with the roller coaster any more. The not knowing what had almost taken the life of our son! I sat there for a long time. If the cardiac arrest was caused by the anesthesia, how could I ever go through another one of our children needing anethesia? how was I going to ever let Dr. McManaway do another exam under anesthesia on Josh? what about when Josh needed surgery for gluacoma in the future? This was affecting the future medical care of all my children!
When I went back in, Gene informed me the cardiologist had been in. He was doing a cardiac cath with EP studies on Aaron the next morning! My fears of anesthesia were going to be faced sooner, as opposed to later!!
It was a very sleepless night for me. During the night, Aaron was referring to himself as "he" and "him", instead of "I" and "me". I felt very disheartened, not only was he going to have to risk anesthesia again, he was showing signs of brain damage!
The next morning, the anesthesiologist came in to explain what he was going to do. I told him "no" he could not use Propofal! He needed to use another medication! I was so distressed, I could not sign the consent forms. When the cardiologist came in, he said they would NOT be using Propofal. But...he wanted to give him a very small dose of it, to see if he had any reaction. He assued me Aaron was going to perfectly safe, nothing bad was would happen to him. (Hmmm, seems I heard that before, on the ride to duPont Hospital!) Another consent form I could not sign. Gene signed the consents, the first he ever has done that with any of our children.
The cardiac cath went well. The cardiologist said had he not known Aaron had been in cardiac arrest 1 week prior, he would not have been able to tell by the look and function of his heart. Praise God!!
After the anguish of the cardiac cath, I was glad we had gone ahead with it. Now I could rest assured Aaron's heart was fine. What a relief!
Rudolph! Can you tell Aaron is feeling better in this picture?
The Weekend of Waiting
With Gene home with the rest of the children, I was alone with Aaron for the weekend.
It was slow going, yet encouraging. He was unable to eat, due to the trauma of vomitting, and due to the NG that had been in place. He was making slow progress with taking fluids.
Aaron was beginning to get up to use the bedsice commode, but still had the foley cath in place. He was incredibly weak, and it took two people to help him transfer to the potty.
At one point, he realized he was not wearing underwear, and was not happy about it. I laughed with joy, and felt this was a good sign of his improvement. There was a time, not so long ago, that he would not have cared, but he had recently become more modest. Not being in control of this situation with the underwear did not make him happy!
The week end was quiet. Continued blood work, and trying to eat. And waiting to see if I noticed any impairments from the cardiac arrest. Each day showed progress, from morning to evening, I noticed a difference.
His kidney function had returned to normal, and his heart was in sinus rhythm.
Aaron wondered what they had on his ear lobe, so I took a picture so he could see his fancy ear ring. He looks like he is sleeping, but he is awake, just very weak.
Aaron's first time out of bed. Looks pretty good, all things considered.
It was slow going, yet encouraging. He was unable to eat, due to the trauma of vomitting, and due to the NG that had been in place. He was making slow progress with taking fluids.
Aaron was beginning to get up to use the bedsice commode, but still had the foley cath in place. He was incredibly weak, and it took two people to help him transfer to the potty.
At one point, he realized he was not wearing underwear, and was not happy about it. I laughed with joy, and felt this was a good sign of his improvement. There was a time, not so long ago, that he would not have cared, but he had recently become more modest. Not being in control of this situation with the underwear did not make him happy!
The week end was quiet. Continued blood work, and trying to eat. And waiting to see if I noticed any impairments from the cardiac arrest. Each day showed progress, from morning to evening, I noticed a difference.
His kidney function had returned to normal, and his heart was in sinus rhythm.
Saturday, August 20, 2011
The Story Continues
The first day in the PICU was filled with ups and down. Aaron's heart rhythm was still erratic, he was in complete heart block.
At one point, the doctors came in and said they were going to put in a pacemaker. When I asked if this would be temporary, they informed me it would be permanent. The idea of my 11yo son having a pacemaker the rest of his life was a bit overwhelming. But no one knew when they would do this. He was not stable enough to go through anesthesia.
The entire day was filled with a parade of doctors and nurses. They had no answers for me, only the same questions that I had already answered...over and over again, with the appearance of each new doctor. And they each wanted to know if I had any questions. Yes, I did, but not any that they had the answers to.
During the second night something happened. Suddenly, there were doctors in Aaron's room again, looking at his cardiac monitor, talking quietly among themselves. The next morning, when the cardiologist came in, he informed me that Aaron's heart had righted itself all on its own. He was now in sinus rhythm! It was faster than they wanted it to be, but it was good. He would not need a pacemaker.
Friday morning, during rounds, the doctors decided it was time to awaken the sleeping giant child. To wean him off the vent and sedation. To let him gently wake up.
It was a day of rejoicing! I knew my son was going to make it!!
One of the medical students discovered during rounds that he was shorter than Aaron. (Aaron is 5'5" and the med student was 5'3") The morning they decided to awaken my son, I laughingly told the med student that Aaron would be ready to arm wrestle by evening. There was laughter all around, and some jokes about the money being on Aaron!
This was an anxious day for me. In spite of the atmosphere of celebration, there was also the unknown that we were still faced with. Would Aaron suffer any brain damage from being down for 10-12 minutes? We would not know for certain for a couple days.
As the sedation began to wear off, and the vent could be removed, the doctors remembered that I had told them about the goofy eyes that Aaron has always made, esp. at his sisters. "Hey, what about the goofy eyes your mom said you make?" one of the doctors asked Aaron. In his groggy state, he made a very good attempt at the goofy eyes. Cheers went up all around the room!
By evening the crowd of doctors had dispersed, it was Friday, and they were all ready to call it a week. They had done good work, and some of them had the weekend to recover.
Gene had gone home to be with the rest of the children for the weekend. I pulled my chair to Aaron's bedside to read the Bible to him and pray for him. After I prayed, thanking God for sparing his life, Aaron began to pray.
"Dear God, please keep healing my body, so you can show everyone how powerful you are", was Aaron's prayer for himself. He spoke this in a barely audible voice, about 6hrs after being taken off the vent. Barely a whisper, but so rich in faith, so precious! He did not ask to be healed, so he could feel better, he wanted to be healed so everyone would know how powerful our God is!
At one point, the doctors came in and said they were going to put in a pacemaker. When I asked if this would be temporary, they informed me it would be permanent. The idea of my 11yo son having a pacemaker the rest of his life was a bit overwhelming. But no one knew when they would do this. He was not stable enough to go through anesthesia.
The entire day was filled with a parade of doctors and nurses. They had no answers for me, only the same questions that I had already answered...over and over again, with the appearance of each new doctor. And they each wanted to know if I had any questions. Yes, I did, but not any that they had the answers to.
During the second night something happened. Suddenly, there were doctors in Aaron's room again, looking at his cardiac monitor, talking quietly among themselves. The next morning, when the cardiologist came in, he informed me that Aaron's heart had righted itself all on its own. He was now in sinus rhythm! It was faster than they wanted it to be, but it was good. He would not need a pacemaker.
Friday morning, during rounds, the doctors decided it was time to awaken the sleeping giant child. To wean him off the vent and sedation. To let him gently wake up.
It was a day of rejoicing! I knew my son was going to make it!!
One of the medical students discovered during rounds that he was shorter than Aaron. (Aaron is 5'5" and the med student was 5'3") The morning they decided to awaken my son, I laughingly told the med student that Aaron would be ready to arm wrestle by evening. There was laughter all around, and some jokes about the money being on Aaron!
This was an anxious day for me. In spite of the atmosphere of celebration, there was also the unknown that we were still faced with. Would Aaron suffer any brain damage from being down for 10-12 minutes? We would not know for certain for a couple days.
As the sedation began to wear off, and the vent could be removed, the doctors remembered that I had told them about the goofy eyes that Aaron has always made, esp. at his sisters. "Hey, what about the goofy eyes your mom said you make?" one of the doctors asked Aaron. In his groggy state, he made a very good attempt at the goofy eyes. Cheers went up all around the room!
By evening the crowd of doctors had dispersed, it was Friday, and they were all ready to call it a week. They had done good work, and some of them had the weekend to recover.
Gene had gone home to be with the rest of the children for the weekend. I pulled my chair to Aaron's bedside to read the Bible to him and pray for him. After I prayed, thanking God for sparing his life, Aaron began to pray.
"Dear God, please keep healing my body, so you can show everyone how powerful you are", was Aaron's prayer for himself. He spoke this in a barely audible voice, about 6hrs after being taken off the vent. Barely a whisper, but so rich in faith, so precious! He did not ask to be healed, so he could feel better, he wanted to be healed so everyone would know how powerful our God is!
Sunday, August 14, 2011
Oh, For Grace To Trust Him More!
'Tis so sweet to trust in Jesus, Just to take him at his Word;
Just to rest upon his promise, Just to know, "Thus saith the Lord."
Jesus, Jesus, how I trust him, How I've proved him o'er and o'er.
Jesus, Jesus, precious Jesus! Oh, for grace to trust him more.
I'm so glad I learned to trust him, Precious Jesus, Saviour, Friend;
And I know that thou art with me, Will be with me 'til the end.
Jesus, Jesus, how I trust him, How I've proved him o'er and o'er.
Jesus, Jesus, precious Jesus! Oh, for grace to trust him more.
As that first night wore on, Aaron would stir and become restless even though under heavy sedation. I sang to him over and over again. I prayed audibly for him, letting him know that God was there and he could rest peacefully because, as Aaron so boldly spoke earlier, "God has this all under control."
Though the mountains shake and the hills be removed,
My unfailing love will not be shaken.
Though the mountains shake and the hills be removed,
My unfailing love will not be shaken.
And neither will my covenent of peace be removed,
My covenent of peace with you.
Oh afficted city, tossed about and without rest,
I'll rebuild your walls with jewels,
And great will be your children's peace.
Though the mountains shake and the hills be removed,
My unfailing love will not be shaken.
**This is part of a song based on Isaiah 54:10-13 Written by a sister in the Lord.
I sang this over and over, as well. This is the song that gets me through rough times. Aaron has heard me sing this many times, and he responded peacefully to it on this night of fighting for his life. (I must say I do not sing it anywhere near as beautifully as the lovely one who put it to music.)
I have called Aaron "my sunshine", and sang "You are My Sunshine" to him since he was my little baby. At 11yo, he was outgrowing being called "my sunshine", but he was not too self important to sing this song to his baby brother and sister on a daily basis. When all else failed to calm him, I sang this to him:)
His first morning in the PICU I opened my Bible and read Lamentations 3:22-26 out loud to Aaron.
"Yet this I call to mind and therefore I have hope:
Because of the Lord's great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.
I said to myself, "The Lord is my portion; therefore I will wait for him."
The Lord is good to those whose hope is in him; to the one who seeks him;
It is good to wait quietly for the salvation of the Lord."
And we waited, still uncertain how this was going to turn out, yet trusting in our Heavenly Father's great love for us.
Just to rest upon his promise, Just to know, "Thus saith the Lord."
Jesus, Jesus, how I trust him, How I've proved him o'er and o'er.
Jesus, Jesus, precious Jesus! Oh, for grace to trust him more.
I'm so glad I learned to trust him, Precious Jesus, Saviour, Friend;
And I know that thou art with me, Will be with me 'til the end.
Jesus, Jesus, how I trust him, How I've proved him o'er and o'er.
Jesus, Jesus, precious Jesus! Oh, for grace to trust him more.
As that first night wore on, Aaron would stir and become restless even though under heavy sedation. I sang to him over and over again. I prayed audibly for him, letting him know that God was there and he could rest peacefully because, as Aaron so boldly spoke earlier, "God has this all under control."
Though the mountains shake and the hills be removed,
My unfailing love will not be shaken.
Though the mountains shake and the hills be removed,
My unfailing love will not be shaken.
And neither will my covenent of peace be removed,
My covenent of peace with you.
Oh afficted city, tossed about and without rest,
I'll rebuild your walls with jewels,
And great will be your children's peace.
Though the mountains shake and the hills be removed,
My unfailing love will not be shaken.
**This is part of a song based on Isaiah 54:10-13 Written by a sister in the Lord.
I sang this over and over, as well. This is the song that gets me through rough times. Aaron has heard me sing this many times, and he responded peacefully to it on this night of fighting for his life. (I must say I do not sing it anywhere near as beautifully as the lovely one who put it to music.)
I have called Aaron "my sunshine", and sang "You are My Sunshine" to him since he was my little baby. At 11yo, he was outgrowing being called "my sunshine", but he was not too self important to sing this song to his baby brother and sister on a daily basis. When all else failed to calm him, I sang this to him:)
His first morning in the PICU I opened my Bible and read Lamentations 3:22-26 out loud to Aaron.
"Yet this I call to mind and therefore I have hope:
Because of the Lord's great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.
I said to myself, "The Lord is my portion; therefore I will wait for him."
The Lord is good to those whose hope is in him; to the one who seeks him;
It is good to wait quietly for the salvation of the Lord."
And we waited, still uncertain how this was going to turn out, yet trusting in our Heavenly Father's great love for us.
'Tis So Sweet to Trust in Jesus
As Gene and I drove from Lancaster to Delaware, I would catch myself humming the hymn " 'Tis So Sweet to Trust in Jesus". I forced myself to be silent, afraid Gene would think I had really lost it.
Only a few days prior, I had been driving with my children and this hymn came to my mind and I sang it to them. I had not sang, or heard this hymn for a long time, but it was commited to my memory from childhood. In hindsight, I realize God was preparing me for what I was about to go through.
The last line in the chorus kept racing through my thoughts as Gene and I drove, "Jesus, Jesus, precious Jesus! Oh for grace to trust him more".
When we got close to duPont Hospital my cell phone rang. The doctor had examined Aaron and wanted to tell me what he planned to do to treat my son. The nephrologist had also examined Aaron and looked at his lab results. They wanted to put in a line and start dialysis. They wanted to do this right away and needed for me to give them verbal permission. I gave them permission to do so. I wanted Aaron to be getting treatment right away, if that is what the specialists thought was best.
While I was talking to the doctor, Gene took a wrong turn and we were lost. The doctor was unable to help us with directions. He assured me that Aaron was "safe and that nothing was going to happen to him" and that we should take our time and drive carefully so we did not have an accident.
We saw police parked at a pizza shop, and stopped for directions.
When we got to duPont, we did not know what door to go into. It was all very confusing. My cell phone rang again. The doctor wanted to know if Aaron was up to date with his developement, if he does ok in school, or does he have behavioural issues. He said Aaron had said inappropriate things to a nurse, and had threatened to pull her hair out. I assured him this was not at all like my son, and if he would just tell me how to get into the hospital, I would be able to assess what was going on. My son's condition was getting worse, he was scared and had never been without me, other than to go to summer camp, and I could not get into the building to be with him!
We finally found our way into the hospital and had to sign in at the security desk and have our pictures taken. All the while, the anxiety and the need to be with Aaron building up inside me. I felt as though I was going to explode, with little pieces of me showering the entire hospital. Not the sort of way one would explode in anger, but feeling as though my heart was unable to contain the fear and anxiety.
We arrive on the floor, and were asked to wait in the waitingroom. The doctor had just started the proceedure place the line for dialysis, and would come out and talk to us as soon as he was finished.
After a few minutes of waiting, I got up to pace. As I looked out in the hallway, there was a sudden scurry of activity, doctors and nurses rushing in and out of the room where they had Aaron. I told Gene that was not a good sign! No one came to talk to us, we knew something terrible was happening, but did not know what. I decided to walk down the hall, closer to the room.
A nurse stopped me to tell me my son was being rescusitated. The floor seemed to open to swallow me, as my legs became weak and would no longer hold my weight. How could this be happening?! He was always so healthy, he was alert and talking to me only a short while ago! Gene and the nurse helped me back to the waitingroom, and we waited for another lifetime for news of our son.
A lady come in and introduced herself as the director of nursing. She said that Aaron had gone into cardiac arrest shortly after they started anesthesia. They were still doing CPR. I vaguely remember laying down on the floor, and wailing long and sorrowful sounds. Sounds that I was not certain came from my body filled the room. She asked if our son was chronically ill! No!
She told us we had every right to go to our son, but advised against it. We decided it was best to not distract anyone, we wanted them to focus on giving Aaron the best care they could give. After a few minutes, she left us. Gene placed a call to our pastor and left a message with the pastor's family to pray.
I continued to lay with my face down on the floor, crying broken heartedly to the Lord. "Please, don't let Aaron die! Please!" Thoughts were racing through my brain and it was difficult for me to focus, the fear and grief was so strong. I did not know how I could go on. How was I supposed to go on with my life if my son died? How was I going to go home and tell the rest of my children that their brother was no longer alive? I could not bear it!! What if I never saw my son alive again?
When Aaron was a baby and we had him dedicated, someone prophesied over him that one day he would be standing in a crowd, testifying about the great power of the Lord. How could that happen if he were dead?! How could that be fulfilled?!
The Lord spoke to me at one point to gently ask me to trust him more. He said some very personal things, that at this point I am unable to share, some day, when his words are fulfilled, I will be able to share them publicly.
After what seemed to be an eternity, the nurse came back to tell us that our son has a heart beat again! The doctor would be out to speak to us when he could.
The nurse brought us food and drink, telling us that if we did not eat we would be of no help to our son. So we forced food and juice and coffee into our mouths, gagging on every mouthful, telling ourselves that this would somehow be helpful to Aaron.
We were not prepared for what the doctor had to say to us. Our son's heart had stopped about 15 minutes after they gave him the anesthesia to insert the dialysis line. They did CPR for 10-12 minutes. They had him on a vent, and heavily sedated. He had an NG tube and a foley catheter in place. He had numerous IV lines. They would not be able to tell us if Aaron would have neurological damage until they took him off the vent and let the sedation wear off. They could not tell us why he went into renal failure, and cardiac arrest. They believed, at this point, the heart was the primary issue, rather than the kidneys, as they had earlier thought. He did not need dialysis, even though the creatinine levels were very high, the potassium and calcium levels were not. They thought perhaps Aaron had Lyme carditis.
After speaking to the doctor, the nurse told us we could go see Aaron. Gene and I walked down the hall, clingly to each others hands.
I wish I could erase from my minds eye the sight of my son in the hospital bed. His eyes were slightly opened, but vacant, his tongue slightly protruding beside the vent tube.
As I approached his bedside, I grasped his hand. It was cold and stiff, like a corpse. I rubbed his arm and the side of his body, it too was cold. I knelt by his bedside as my legs could no longer support my body. I prayed again. Pleading with the Lord for a miracle. Gene knelt beside me. And we thanked the Lord that Aaron was still alive, and begged for a miracle.
This picture was taken the day they decided Aaron was well enough to come off the vent. I could not bear to take any pictures before then, for fear that the last picture I would have of my son would be one of him on a vent.
The tower of IVs. One for fluids, the rest for medications.
Only a few days prior, I had been driving with my children and this hymn came to my mind and I sang it to them. I had not sang, or heard this hymn for a long time, but it was commited to my memory from childhood. In hindsight, I realize God was preparing me for what I was about to go through.
The last line in the chorus kept racing through my thoughts as Gene and I drove, "Jesus, Jesus, precious Jesus! Oh for grace to trust him more".
When we got close to duPont Hospital my cell phone rang. The doctor had examined Aaron and wanted to tell me what he planned to do to treat my son. The nephrologist had also examined Aaron and looked at his lab results. They wanted to put in a line and start dialysis. They wanted to do this right away and needed for me to give them verbal permission. I gave them permission to do so. I wanted Aaron to be getting treatment right away, if that is what the specialists thought was best.
While I was talking to the doctor, Gene took a wrong turn and we were lost. The doctor was unable to help us with directions. He assured me that Aaron was "safe and that nothing was going to happen to him" and that we should take our time and drive carefully so we did not have an accident.
We saw police parked at a pizza shop, and stopped for directions.
When we got to duPont, we did not know what door to go into. It was all very confusing. My cell phone rang again. The doctor wanted to know if Aaron was up to date with his developement, if he does ok in school, or does he have behavioural issues. He said Aaron had said inappropriate things to a nurse, and had threatened to pull her hair out. I assured him this was not at all like my son, and if he would just tell me how to get into the hospital, I would be able to assess what was going on. My son's condition was getting worse, he was scared and had never been without me, other than to go to summer camp, and I could not get into the building to be with him!
We finally found our way into the hospital and had to sign in at the security desk and have our pictures taken. All the while, the anxiety and the need to be with Aaron building up inside me. I felt as though I was going to explode, with little pieces of me showering the entire hospital. Not the sort of way one would explode in anger, but feeling as though my heart was unable to contain the fear and anxiety.
We arrive on the floor, and were asked to wait in the waitingroom. The doctor had just started the proceedure place the line for dialysis, and would come out and talk to us as soon as he was finished.
After a few minutes of waiting, I got up to pace. As I looked out in the hallway, there was a sudden scurry of activity, doctors and nurses rushing in and out of the room where they had Aaron. I told Gene that was not a good sign! No one came to talk to us, we knew something terrible was happening, but did not know what. I decided to walk down the hall, closer to the room.
A nurse stopped me to tell me my son was being rescusitated. The floor seemed to open to swallow me, as my legs became weak and would no longer hold my weight. How could this be happening?! He was always so healthy, he was alert and talking to me only a short while ago! Gene and the nurse helped me back to the waitingroom, and we waited for another lifetime for news of our son.
A lady come in and introduced herself as the director of nursing. She said that Aaron had gone into cardiac arrest shortly after they started anesthesia. They were still doing CPR. I vaguely remember laying down on the floor, and wailing long and sorrowful sounds. Sounds that I was not certain came from my body filled the room. She asked if our son was chronically ill! No!
She told us we had every right to go to our son, but advised against it. We decided it was best to not distract anyone, we wanted them to focus on giving Aaron the best care they could give. After a few minutes, she left us. Gene placed a call to our pastor and left a message with the pastor's family to pray.
I continued to lay with my face down on the floor, crying broken heartedly to the Lord. "Please, don't let Aaron die! Please!" Thoughts were racing through my brain and it was difficult for me to focus, the fear and grief was so strong. I did not know how I could go on. How was I supposed to go on with my life if my son died? How was I going to go home and tell the rest of my children that their brother was no longer alive? I could not bear it!! What if I never saw my son alive again?
When Aaron was a baby and we had him dedicated, someone prophesied over him that one day he would be standing in a crowd, testifying about the great power of the Lord. How could that happen if he were dead?! How could that be fulfilled?!
The Lord spoke to me at one point to gently ask me to trust him more. He said some very personal things, that at this point I am unable to share, some day, when his words are fulfilled, I will be able to share them publicly.
After what seemed to be an eternity, the nurse came back to tell us that our son has a heart beat again! The doctor would be out to speak to us when he could.
The nurse brought us food and drink, telling us that if we did not eat we would be of no help to our son. So we forced food and juice and coffee into our mouths, gagging on every mouthful, telling ourselves that this would somehow be helpful to Aaron.
We were not prepared for what the doctor had to say to us. Our son's heart had stopped about 15 minutes after they gave him the anesthesia to insert the dialysis line. They did CPR for 10-12 minutes. They had him on a vent, and heavily sedated. He had an NG tube and a foley catheter in place. He had numerous IV lines. They would not be able to tell us if Aaron would have neurological damage until they took him off the vent and let the sedation wear off. They could not tell us why he went into renal failure, and cardiac arrest. They believed, at this point, the heart was the primary issue, rather than the kidneys, as they had earlier thought. He did not need dialysis, even though the creatinine levels were very high, the potassium and calcium levels were not. They thought perhaps Aaron had Lyme carditis.
After speaking to the doctor, the nurse told us we could go see Aaron. Gene and I walked down the hall, clingly to each others hands.
I wish I could erase from my minds eye the sight of my son in the hospital bed. His eyes were slightly opened, but vacant, his tongue slightly protruding beside the vent tube.
As I approached his bedside, I grasped his hand. It was cold and stiff, like a corpse. I rubbed his arm and the side of his body, it too was cold. I knelt by his bedside as my legs could no longer support my body. I prayed again. Pleading with the Lord for a miracle. Gene knelt beside me. And we thanked the Lord that Aaron was still alive, and begged for a miracle.
Tuesday, August 9, 2011
So the Story Begins
Three weeks ago, I was sitting in my house working on plans for our new school year. Little did I realize I was about to take an incredible journey, unlike any other I had ever taken.
Aaron had been working hard all day, working hard at getting out of doing his chores, that is. He had employed every trick in the book: trips to the bathroom, slipping out the back door, you name it. Finally, at suppertime, I called him in again, and told him he needed to empty the dishwasher, or we would have nothing to eat with.
He came in and complained of being dizzy. It was a very hot day, so I suggested he sit down a few minutes and rest in the a/c with a drink. However, I believed his dizziness was just another ploy to get out of unloading the dishwasher. Until he began to vomit.
My 1st thought was that Aaron had picked up a stomach bug. Stomach bugs are not pleasant with any family, but with a large family, it is a whole new level of unpleasantness, again and again.
A few minutes later, I sat down to watch the evening news, which is a rare occurrence for me, since it comes on when we are usually eating supper. They had a short segment on heat exhaustion. It caused me to re-assess the situation with Aaron.
I immediately had him get into the bathtub, while I called our family doctor's office. After a couple calls back and forth with the doctor, and more vomiting, he decided he felt we cold ride this out at home, as long as the vomitting did not increase. Aaron's temperature was normal, he was taking sips of fluid every 5-10 minutes, and his vomitting had decreased.
We kept him downstairs with us for the night, to observe, and encourage with fluids, and tried to get some sleep.
Morning came with increased vomitting. After a call to our family doctor, we headed for the ER. We thought we would get a bag of fluids, some medicine for the vomitting, they would do some blood work, and send us on our merry way. When Aaron gets any type of tummy bug, or upset, he oft-times would end up needing medicine to make the vomitting stop, we assumed this was another one of those times.
We were not prepared for what was about to happen!
The doctor came in, ordered blood work and an IV, just as we expected. When the bloodwork was done, he came in to give us the results.
"Your son is in renal failure" the doctor told us. "What?! How can he be in renal failure?" I asked. He said he did not know, but was calling the pediatrician down from the peds unit to see Aaron, and she would decide what needed to be done.
When the ER doctor left the room, Aaron looked at me and said, "God has this all under control, Mom". That is when I broke down and cried. We called our pastor, and he came right away to annoint Aaron with oil, for healing. (James 5:14-15a)
The pediatrician decided after speaking to the nephrologist at AI duPont that Aaron should be transferred there to be admitted.
While the phone calls were placed and the return call awaited, Aaron's oxygen level began to drop, and his cardiac rhythm began to become irregular. They place a nasal cannula on him, and his level continued to drop. They but on a mask, and still continued to drop. They put on a non-rebreather mask, had a respiratory therapist draw arterial blood gasses, and moved him into a trauma room, in the event they needed to intubate him.
At this point, the decision had been made to airlift Aaron, rather than send him by ambulance, to duPont.
Gene and I were in a panic. What were we supposed to do? The rest of the children, from Sarah down, were home by themselves. Gene decided to go home, to tell the children what was going on. We did not think that was something we wanted to tell her over the phone. And he wanted to pack things for me, since we would obviously be staying a day or two.
Before Gene left, Aaron told us that he did not want to die.
I was alone with Aaron when the helicopter came to get him. I prayed with him, and held his hand as they strapped him down in preparation for his helicopter ride. I kissed him at least a dozen times. He was alert and knew what was going on, yet he was calm.
The pediatrician walked with me to the waitingroom and offered to wait with me until Gene came back. I thanked her, and made a comment about not wanting to take her away from her work. In reality, I wanted to be alone, well, as alone as one can be in a busy ER waitingroom. I was alone in a crowd of strangers, and did not care that I was crying uncontrolably.
While I was waiting, my mom called. She said my brother had told her we were taking Aaron into the hospital and she was wondering how he was. I broke down and cried even more as I told her my son was in kidney failure. She put my brother on the phone. Fred told me to not let my mind go to places it should not go. He was confident God would perform a miracle. More tears, as I told him I was talking to a miracle. (Fred's life is a miracle of redemption.)
My cell phone rang again. The helicopter made it to duPont and Aaron wanted to talk to me. He sounded good, a bit scared, as one would expect, but good.
After what seemed an eternity, Gene picked me up, and we were on our way with our mapquest directions.
Aaron had been working hard all day, working hard at getting out of doing his chores, that is. He had employed every trick in the book: trips to the bathroom, slipping out the back door, you name it. Finally, at suppertime, I called him in again, and told him he needed to empty the dishwasher, or we would have nothing to eat with.
He came in and complained of being dizzy. It was a very hot day, so I suggested he sit down a few minutes and rest in the a/c with a drink. However, I believed his dizziness was just another ploy to get out of unloading the dishwasher. Until he began to vomit.
My 1st thought was that Aaron had picked up a stomach bug. Stomach bugs are not pleasant with any family, but with a large family, it is a whole new level of unpleasantness, again and again.
A few minutes later, I sat down to watch the evening news, which is a rare occurrence for me, since it comes on when we are usually eating supper. They had a short segment on heat exhaustion. It caused me to re-assess the situation with Aaron.
I immediately had him get into the bathtub, while I called our family doctor's office. After a couple calls back and forth with the doctor, and more vomiting, he decided he felt we cold ride this out at home, as long as the vomitting did not increase. Aaron's temperature was normal, he was taking sips of fluid every 5-10 minutes, and his vomitting had decreased.
We kept him downstairs with us for the night, to observe, and encourage with fluids, and tried to get some sleep.
Morning came with increased vomitting. After a call to our family doctor, we headed for the ER. We thought we would get a bag of fluids, some medicine for the vomitting, they would do some blood work, and send us on our merry way. When Aaron gets any type of tummy bug, or upset, he oft-times would end up needing medicine to make the vomitting stop, we assumed this was another one of those times.
We were not prepared for what was about to happen!
The doctor came in, ordered blood work and an IV, just as we expected. When the bloodwork was done, he came in to give us the results.
"Your son is in renal failure" the doctor told us. "What?! How can he be in renal failure?" I asked. He said he did not know, but was calling the pediatrician down from the peds unit to see Aaron, and she would decide what needed to be done.
When the ER doctor left the room, Aaron looked at me and said, "God has this all under control, Mom". That is when I broke down and cried. We called our pastor, and he came right away to annoint Aaron with oil, for healing. (James 5:14-15a)
The pediatrician decided after speaking to the nephrologist at AI duPont that Aaron should be transferred there to be admitted.
While the phone calls were placed and the return call awaited, Aaron's oxygen level began to drop, and his cardiac rhythm began to become irregular. They place a nasal cannula on him, and his level continued to drop. They but on a mask, and still continued to drop. They put on a non-rebreather mask, had a respiratory therapist draw arterial blood gasses, and moved him into a trauma room, in the event they needed to intubate him.
At this point, the decision had been made to airlift Aaron, rather than send him by ambulance, to duPont.
Gene and I were in a panic. What were we supposed to do? The rest of the children, from Sarah down, were home by themselves. Gene decided to go home, to tell the children what was going on. We did not think that was something we wanted to tell her over the phone. And he wanted to pack things for me, since we would obviously be staying a day or two.
Before Gene left, Aaron told us that he did not want to die.
I was alone with Aaron when the helicopter came to get him. I prayed with him, and held his hand as they strapped him down in preparation for his helicopter ride. I kissed him at least a dozen times. He was alert and knew what was going on, yet he was calm.
The pediatrician walked with me to the waitingroom and offered to wait with me until Gene came back. I thanked her, and made a comment about not wanting to take her away from her work. In reality, I wanted to be alone, well, as alone as one can be in a busy ER waitingroom. I was alone in a crowd of strangers, and did not care that I was crying uncontrolably.
While I was waiting, my mom called. She said my brother had told her we were taking Aaron into the hospital and she was wondering how he was. I broke down and cried even more as I told her my son was in kidney failure. She put my brother on the phone. Fred told me to not let my mind go to places it should not go. He was confident God would perform a miracle. More tears, as I told him I was talking to a miracle. (Fred's life is a miracle of redemption.)
My cell phone rang again. The helicopter made it to duPont and Aaron wanted to talk to me. He sounded good, a bit scared, as one would expect, but good.
After what seemed an eternity, Gene picked me up, and we were on our way with our mapquest directions.
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