SATURDAY, OCTOBER 30, 2010
For those of you who don't know, Dylan suffered a massive GI bleed last week. He had a fever and we thought he had an infection. I had stayed home from work with him. He was napping and started sweating and looking very gray. I called the doctor to see if we could get him looked at. Before I really knew what was happening Dylan had blood everywhere. It was an event that I had dreaded since the doctors told me it was a possibility and here it was. I hung up on our doctor called 911. It was kind of a blur from there. The ambulance came and we were at the ER. Noah had to drive an hour and a half in stop and go traffic to get to us so I can only imagine what fear he had.
We spent 12 hours in the ER. He was no longer vomiting blood, but it was now coming from the other end. Dylan received a pint of blood while in the ER and was then transfered by ambulance to PICU in Oakland. We were told he would have an endoscopy first thing in the morning to see where the blood was coming from. The next morning came and went. We were pushed further and further down the line. Poor Dylan went 27 hours with out food and almost 30 hours without sleep. We finally got in to the OR (was done in OR just in case). Dylan was intubated. They wanted airway access in case of another bleed. The doctor found a huge varix. It travels from the middle of his esophagus to stomach. The doctor banded it to help prevent another bleed. We spent the next day on observation and went home.
Dylan will have another endoscopy done on November 12th. They will re band if necessary and check for new varices. If things look worse then it will be repeated two weeks later. If things look better then we can go four weeks out to the next endoscopy. Needless to say we will be seeing a lot more of Dr. Rich and the hospital.
With this new turn of events Dylan has be referred to Stanford again for another transplant evaluation. This bleed may be what puts him on the list . We do know that Noah can donate so there is not a huge need to rush, but having him listed is the next step. Dylan would have a very low PELD score (the number that determines where the child is place on the list). We are hoping for exception points due to the bleeding.
We have a very long road ahead of us and are blessed to have amazing family, friends and loved ones all around us.
For those of you who don't know, Dylan suffered a massive GI bleed last week. He had a fever and we thought he had an infection. I had stayed home from work with him. He was napping and started sweating and looking very gray. I called the doctor to see if we could get him looked at. Before I really knew what was happening Dylan had blood everywhere. It was an event that I had dreaded since the doctors told me it was a possibility and here it was. I hung up on our doctor called 911. It was kind of a blur from there. The ambulance came and we were at the ER. Noah had to drive an hour and a half in stop and go traffic to get to us so I can only imagine what fear he had.
We spent 12 hours in the ER. He was no longer vomiting blood, but it was now coming from the other end. Dylan received a pint of blood while in the ER and was then transfered by ambulance to PICU in Oakland. We were told he would have an endoscopy first thing in the morning to see where the blood was coming from. The next morning came and went. We were pushed further and further down the line. Poor Dylan went 27 hours with out food and almost 30 hours without sleep. We finally got in to the OR (was done in OR just in case). Dylan was intubated. They wanted airway access in case of another bleed. The doctor found a huge varix. It travels from the middle of his esophagus to stomach. The doctor banded it to help prevent another bleed. We spent the next day on observation and went home.
Dylan will have another endoscopy done on November 12th. They will re band if necessary and check for new varices. If things look worse then it will be repeated two weeks later. If things look better then we can go four weeks out to the next endoscopy. Needless to say we will be seeing a lot more of Dr. Rich and the hospital.
With this new turn of events Dylan has be referred to Stanford again for another transplant evaluation. This bleed may be what puts him on the list . We do know that Noah can donate so there is not a huge need to rush, but having him listed is the next step. Dylan would have a very low PELD score (the number that determines where the child is place on the list). We are hoping for exception points due to the bleeding.
We have a very long road ahead of us and are blessed to have amazing family, friends and loved ones all around us.
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