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| Benjamin |
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The next morning another neonatologist came in and said that he had looked at Benjamin and everything looked okay, but they were keeping an eye on him. The next day before we took him home he came back in and said that Benjamin looked good. He said that he did hear a murmur but that it wasn't very loud and he wasn't concerned. He said that the left side of Benjamin's heart was a little enlarged and he wanted us to come back on Thursday to see a pediatric cardiologist for an echo just to be safe. He told us to watch for things like fast breathing, mouth and fingers and feet turning blue. He said if these things happened to get him back to the hospital right away. We came home on a Saturday and Benjamin seemed fine, but I did notice that he slept a whole lot. Even more than newborns usually do. It was hard to get him to stay awake and nurse.
Three days after we came home Benjamin started breathing fast. He was breathing over 80 breathes a minute. We called the hospital and the pediatrician on call told us to bring him right away. When we got to the hospital, they said he was breathing over 100 breathes a minute and was cold.
They did a chest x-ray and it showed that his whole heart was enlarged. They prepared to transport him to LeBonheur Children's Hospital. They had a hard time getting an I.V. Two nurses and two doctors tried and they still couldn't get one. They had to transport him to a hospital two blocks away just to get the I.V. There they had a neonatal unit that could get the I.V. Then we were finally off to LeBonheur.
We arrived at LeBonheur very early on June 11, 1997. I think it was around 4 or 5 a.m. I'm not really sure. It began to sink in how sick Benjamin was when they rushed him right into the pediatric intensive care unit without stopping at the ER.
Dr. Douglas, Benjamin's cardiologist was there and he examined him and did an echo among other test. He had Johnny and I wait in a small room while he did the test. It seemed like forever before he finally came to talk to us. When he did come we were not prepared for what he had to say.
He told us that Benjamin was a very sick baby. He said Benjamin had been born with several heart defects and they were serious. He said he needed surgery now and then two more before the age of two. He said the first surgery (Norwood) was very serious and that he might not make it out of surgery and if he did he might not recover. He said he had a 50/50 chance of surviving. Later the surgeon said he thought Benjamin's chances was higher, about 50/70. They told us there was a high risk of him having a stroke after surgery.
I really can't remember all of what they told us. It seemed as though after I heard Dr. Douglas say that he was so very sick and that he might die that I just went numb. I could hear what he was saying but I just couldn't comprehend or process what it meant. At one point, I remember just shaking all over and I couldn't stop. The nurse ask if I was cold and I said no. I just shook for about 10 min and couldn't stop.
Benjamin had his Norwood on June 16, 1997. He did really well. They told us he did better than they had expected. They weren't able to close his sternum though. They had to leave it open for one week before they could go back in to close it.
There were many close calls for Benjamin. His sats would drop and at one point they went down to 32. He had trouble getting off the ventilator. He was on it for 22 days. It took three tries to get him off the ventilator.
After the surgery he swelled up so badly. His little eyes were swelled shut. Also his ears were swelled so bad they folded in half. It was so hard to see him like that. People always say that you forget the really bad things in life but I think I will have that in my memory forever. I didn't think it could get any worse and then they had to start the diuretics and drain the fluid off. It took several days to do this. They would have to turn him every so often to even out the fluid. Whatever side he was laying on the fluid would just collect on that side. It was awful.
Then it seemed he went from one extreme to another. It seemed like they dried him up like a potato chip. He looked like a little old man. He went from 9 lb. 1 oz at birth to 6 lb.
We were finally able to bring him home after 22 days in the PICU and 5 days on the floor. It was so good to bring him home but we were so scared too. He had a paralyzed left vocal cord and we were afraid we wouldn't hear him when he cried. I was also afraid I would give his medicines wrong. He came home on 11 different medicines.
Before we left the hospital Johnny noticed a knot in Benjamin's stomach. He showed it to the surgeon and they ran a test. They said it was his liver enlarged. They were going to keep an eye on it. We brought him back a few days later and told them that he wasn't eating well. They sent us to a pediatric GI doctor.
There we found out that Benjamin's gall bladder and liver were obstructed. The doctor told us that it was serious, and was just as serious as his heart problem. We couldn't believe what we were hearing. We couldn't imagine anything that bad! His words were "This could take him out of here faster than his heart problem". He said you could fix a heart but if the medicine didn't work there wasn't much you could do for the liver.
At one point Benjamin's bowel movements turned white. By the next morning they started having green in them again and we learned that this was good because it meant the medicine was working. Benjamin stayed on the Actigall for about two months and had to go back for checkups for several months to the GI doctor. He would only let him have breast milk for the first six months then he could start cereal. He was released from the GI doctor at around seven months.
Benjamin had his bi-directional Glenn surgery at eight months old. He did well on this surgery. He came home three days after surgery! This was a record at LeBonheur. During the surgery they found that a lymph node was putting pressure on his pulmonary artery, causing pulmonary stenosis. They removed the lymph node and now the Pulmonary Stenosis has been corrected.
Benjamin has done very well heart-wise since his surgery. He has had two ear infections. With the second one he had five different antibiotics and it still wouldn't go away so we had to put tubes in his ears. He did very well with that.
While they had him asleep, they went down with a light to look at his vocal cords. When he was eight months old we were told he had nerve damage from the Norwood surgery and that it probably wouldn't get any better. It seemed like almost the next day he started getting louder. Well, when they went down this time with the light they found that both vocal cords were moving! His trachea is a little too narrow but his vocal cords are moving!
We have learned a lot over the last two years. The biggest lesson I have learned is to take one day at a time. It's hard not to think about the future. I wonder what it will hold for Benjamin. Will he be happy? Will he be healthy? The most scary is: How long will he live? I have come to realize that no one knows that. I have learned to look at Benjamin each day and if he is doing well that day, then that is what matters.
I have also learned that time is so special. I have two other boys and I appreciate my time with them more. Joshua is 11 and Daniel is 8. Going through something like this affects the whole family. Spending time together is more important now. I have heard that something like this can cause family's to break up. We have become even closer. I'm not saying it has been easy because it hasn't. It's the hardest thing I have ever gone through.
Benjamin had his pre-Fontan heart cath on August 25th. We found out that he didn't have any collaterals. So now we don't know why he is getting so out of breath. His Fontan will be September 20th. We are just hoping that will help his breathing. If it doesn't, we will have to look into other possibilities. This may just be the way he will be.
We hope that will be the last of surgeries for Benjamin. The doctors say that they just don't know how long his heart will work this way. He may have to have a heart transplant some day. I'm still scared for him to have to go through the surgery but I just believe that God has a plan for Benjamin. I don't believe he brought him this far to let him die. I believe he will be okay.
October 1999
Benjamin had his non-fenestrated extra-cardiac Fontan on September 22, 1999. He did well through the surgery. He came from the operating room of the vent! He was only in the PICU a little over 24 hours. He came home on Monday, September 25th.
After Benjamin got home he became very congested. We called his pediatric cardiologist on Tuesday. He said to start him on Pedia-Care. The next day he didn't seem to be getting any better. We were concerned because he wasn't eating at all. He also had quit drinking very much. So we took him to the doctor's office in our town and found out that he had pleural effusion and pneumonia.
We took him back to LeBonheur where he had to have a chest tube put back in to drain the fluid from around his right lung. He stayed in the hospital until October 3.
We took him back to our pediatric cardiologist two days later and the x-ray showed that the pleural effusion was back. This time the doctor decided to try to treat it with added diuretics.
We took him back to the pediatric cardiologist three days later and the fluid was almost gone! His doctor was very surprised! He was expecting to have to put in another chest tube.
We will take him back and have another x-ray done this Thursday, October 14th. We are praying the pleural effusion doesn't come back.
While Benjamin was in the hospital they did an echo of his heart. Dr. Waller said he could barely see his pulmonary artery. He said in a few months Benjamin will have to have another heart cath so he can put some stents in his pulmonary artery.
We are so thankful to God for bringing Benjamin this far! We believe that he has a plan for Benjamin. We have learned so much from Benjamin's courage and strength! He is really a very special little boy and we love him so much!
November 1999
Benjamin has still been having trouble with pleural effusions. The fluid has built up around his lung four times since surgery. We are treating it with diuretics for now. He may have to have a cath. The cardiologist thinks it may be his small pulmonary artery causing the trouble. He said if it was too small for him to put a stent in it through a cath that Benjamin may have to have another surgery. Please pray that this is not the case.
June 2005
Benjamin will be 8 years old this Sunday. He did have to have two stents placed in his pulmonary artery. He is doing really well now. We see his cardiologist on a yearly basis. He does get out of breath easily but he doesn't let it slow him down in the least! He rides his dirt bike, plays baseball, basketball and soccer. He is a very active little boy and a huge blessing to us. He has had to have occupational therapy and physical therapy. He is still taking the occupational therapy on a weekly basis.
October 2007
Benjamin had a heart cath on September 12th. Benjamin's aorta is enlarged. Dr. Waller said it's about 30% to big. He said Benjamin could not play contact sports which we already knew but he now says Benjamin can't ride any of the G Force roller coasters. He said we have to be very careful about him getting a hit to the chest. Benjamin's artery to his right leg is also obstructed. His body has formed collaterals, so he does have good blood flow to his leg. For now we will just watch it.
