Waiting anxiously. As I type this Dylan is recovering from yet another surgery. My strong little boy has endured so much and it never seems to end. On July 5th, Dylan had his tonsils and adenoids removed. It sounds like just a "normal kid" thing to have done, but when dealing with Dylan nothing is normal. This last cold and flu season Dylan had more than 5 throat infections and strep multiple times too. On top of these infections Dylan was also in a constant battle with the Epstein Barr Virus putting him at a greater risk of developing PTLD (cancer). The EBV lies dormant in the tonsils. Everyone involved with Dylan's care felt much better by having them out. So Dylan went to see the head and neck surgeon at Kaiser for a consult. Dr. Mueed Amhad was the man we met with. I immediately felt very comfortable with him. He was more than willing to think out of the box and agreed to removing them even though it was not for the typical reasons for Dylan's age group. He asked for a letter from Stanford stating their wishes and Dylan was scheduled for surgery.
Dylan has had anesthesia multiple times. He has had multiple surgeries and procedures. Every time he has something done it hurts just like the last time and scares each one of us just as much as the time before. It really NEVER gets any easier. One of our coping techniques is to have the process of induction streamlined. After seven years living this life we know what works for Dylan and what doesn't and more importantly Dylan knows. It is almost like our security blanket but sadly on the day of surgery we were not allowed this comfort. The week leading up to Dylan's surgery we were expecting a call from anesthesia. We had informed multiple people, multiple times that Dylan had a different way of doing things, but no one called.
Before we knew it the dreaded day was upon us. Dylan was not scheduled until 2:20 in the afternoon with an arrival time of 12:45. Poor guy would have to go more than 18 hours with out food or drink. We had Tegan with us so Noah and I would be flip flopping back and forth between the both of them since she is not allowed back. It is so much easier now that she is older. She is now more content with dad and less dependent on me. Noah started in the back first while I got Tegan to sleep. When he arrived in the back he made the nurse aware of how Dylan would be going under. She quickly backed it up with "on no...we do the mask here". Noah then made it VERY clear that this is not how it would be going down. It seemed it was time to make the switch. Mama bear was making an appearance ( I have decided that I need a shirt that says "mama bear" to wear to things like this). I had been warned by Noah by text, before I came back, just what I was getting in to. Needless to say I came back there ready to fight for my little man.
It amuses me how a doctor can get so bent out of shape. No one's ego should come into play when it comes to the care of a patient. First off, this anesthesiologist is not a pediatric doctor. There is a reason they have a pediatric specialty. It takes a very special person to work with a child. Upon meeting this doctor I wanted so badly to be back at LPCH where they are all experts on children and have experience dealing with their parents too. I will be the first to admit that we are unlike most parents. We don't ask...we tell. We know our stuff and we will let you know if we feel you don't. With out any hesitation either. We are advocates for our child and we take that job VERY seriously. I can not begin to explain how angry I became with this doctor. It seemed as if they were going out of their way to make things difficult for us. We told them Dylan was going to have an IV with Emla cream (numbing medication). They told us they did not have it and we couldn't use our own (for liability issues). I was also informed they did not have albuterol for Dylan and that I needed to get his inhaler. I am sorry....What kind of a hospital does not have a nebulizer or albuterol? I can venture to say that they most likely did. After getting Dylan's inhaler and administering it myself I asked which vein he wanted Dylan's Emla cream on. Again, I placed it myself. If their plan was to break me down and let them do it their way...they failed.
The temper tantrum got worse from there. He began to throw things around and make snide remarks under his breath. The nurse asked at one point what he wanted and he then stated "it really wasn't up to him" and they both laughed. How childish is that? Did I really offend him that much? I understand that he is the "doctor". He went to school and read the books. I, on the other hand, have lived this life for seven years. I have taken part in discussion after discussion regarding Dylan. I have held him down for countless IVs and lab draws. I have sat beside praying for my child too many times. I know what works for my child and I am sorry if that extra 5 minutes puts a damper on his schedule. His schedule is not my concern and doing this "his way" will potentially put my child through trauma which will the affect every other time he has anesthesia done. So all I can say is, get over it. He proceeded to give Dylan the versed. He administered 1 milligram through his IV. I almost laughed. One milligram is not nearly enough. He normally gets about four times that amount. It was about this time they started to wheel him back. I felt as if everything was being rushed. He was still completely aware of his surroundings and scared out of his mind. I walked with him to the door and they took him away. It is by far one of the worst feelings as a mother. Watching your terrified child get wheeled away from you and not being able to help.
His surgery was about an hour long. The surgeon came out to talk to us when it was done. Dylan's tonsils were a good size and his adenoids were very large. He said Dylan tolerated the procedure well and we would be allowed back soon. Noah went back to see Dylan when it was time. He was in a lot of pain. The recovery nurse, who was awesome, gave Dylan three doses of Fentanyl and a dose of Morphine. When he seemed more comfortable we were sent on our merry way. I learned later that he should have stayed inpatient. Stanford had requested it, but that was over looked. It has been a tough recovery. In some ways it has been worse than transplant. We have had a terrible time keeping fluids in him. His poor throat hurt so much in the beginning that he did not want to eat or drink anything. Dylan's GI doctor ordered some electrolyte labs to make sure he was getting enough. Dehydration is always a concern after transplant as it can lead to shrinking blood vessels which can lead to them clotting off. With little to no blood flow organs die. At that time everything looked good. It seemed as if we were through the worst of it.
Dylan is now one week post op. Over the past two days Dylan has been spiking fevers. His stomach hurts and he just seems off. I took Dylan to see his pediatrician and there were no obvious signs of infection. I spoke with Stanford last night and at their request I had lab work done this morning. I am just waiting now. I am also packing a bag for the hospital because if I don't we will most likely need it. I am hoping and praying it is just his body responding to the surgery or that he has a virus of some kind. I am praying it is not his liver that is sick or damaged from lack of fluid in his system. I guess we will see.
-Amber
Dylan has had anesthesia multiple times. He has had multiple surgeries and procedures. Every time he has something done it hurts just like the last time and scares each one of us just as much as the time before. It really NEVER gets any easier. One of our coping techniques is to have the process of induction streamlined. After seven years living this life we know what works for Dylan and what doesn't and more importantly Dylan knows. It is almost like our security blanket but sadly on the day of surgery we were not allowed this comfort. The week leading up to Dylan's surgery we were expecting a call from anesthesia. We had informed multiple people, multiple times that Dylan had a different way of doing things, but no one called.
Before we knew it the dreaded day was upon us. Dylan was not scheduled until 2:20 in the afternoon with an arrival time of 12:45. Poor guy would have to go more than 18 hours with out food or drink. We had Tegan with us so Noah and I would be flip flopping back and forth between the both of them since she is not allowed back. It is so much easier now that she is older. She is now more content with dad and less dependent on me. Noah started in the back first while I got Tegan to sleep. When he arrived in the back he made the nurse aware of how Dylan would be going under. She quickly backed it up with "on no...we do the mask here". Noah then made it VERY clear that this is not how it would be going down. It seemed it was time to make the switch. Mama bear was making an appearance ( I have decided that I need a shirt that says "mama bear" to wear to things like this). I had been warned by Noah by text, before I came back, just what I was getting in to. Needless to say I came back there ready to fight for my little man.
It amuses me how a doctor can get so bent out of shape. No one's ego should come into play when it comes to the care of a patient. First off, this anesthesiologist is not a pediatric doctor. There is a reason they have a pediatric specialty. It takes a very special person to work with a child. Upon meeting this doctor I wanted so badly to be back at LPCH where they are all experts on children and have experience dealing with their parents too. I will be the first to admit that we are unlike most parents. We don't ask...we tell. We know our stuff and we will let you know if we feel you don't. With out any hesitation either. We are advocates for our child and we take that job VERY seriously. I can not begin to explain how angry I became with this doctor. It seemed as if they were going out of their way to make things difficult for us. We told them Dylan was going to have an IV with Emla cream (numbing medication). They told us they did not have it and we couldn't use our own (for liability issues). I was also informed they did not have albuterol for Dylan and that I needed to get his inhaler. I am sorry....What kind of a hospital does not have a nebulizer or albuterol? I can venture to say that they most likely did. After getting Dylan's inhaler and administering it myself I asked which vein he wanted Dylan's Emla cream on. Again, I placed it myself. If their plan was to break me down and let them do it their way...they failed.
The temper tantrum got worse from there. He began to throw things around and make snide remarks under his breath. The nurse asked at one point what he wanted and he then stated "it really wasn't up to him" and they both laughed. How childish is that? Did I really offend him that much? I understand that he is the "doctor". He went to school and read the books. I, on the other hand, have lived this life for seven years. I have taken part in discussion after discussion regarding Dylan. I have held him down for countless IVs and lab draws. I have sat beside praying for my child too many times. I know what works for my child and I am sorry if that extra 5 minutes puts a damper on his schedule. His schedule is not my concern and doing this "his way" will potentially put my child through trauma which will the affect every other time he has anesthesia done. So all I can say is, get over it. He proceeded to give Dylan the versed. He administered 1 milligram through his IV. I almost laughed. One milligram is not nearly enough. He normally gets about four times that amount. It was about this time they started to wheel him back. I felt as if everything was being rushed. He was still completely aware of his surroundings and scared out of his mind. I walked with him to the door and they took him away. It is by far one of the worst feelings as a mother. Watching your terrified child get wheeled away from you and not being able to help.
His surgery was about an hour long. The surgeon came out to talk to us when it was done. Dylan's tonsils were a good size and his adenoids were very large. He said Dylan tolerated the procedure well and we would be allowed back soon. Noah went back to see Dylan when it was time. He was in a lot of pain. The recovery nurse, who was awesome, gave Dylan three doses of Fentanyl and a dose of Morphine. When he seemed more comfortable we were sent on our merry way. I learned later that he should have stayed inpatient. Stanford had requested it, but that was over looked. It has been a tough recovery. In some ways it has been worse than transplant. We have had a terrible time keeping fluids in him. His poor throat hurt so much in the beginning that he did not want to eat or drink anything. Dylan's GI doctor ordered some electrolyte labs to make sure he was getting enough. Dehydration is always a concern after transplant as it can lead to shrinking blood vessels which can lead to them clotting off. With little to no blood flow organs die. At that time everything looked good. It seemed as if we were through the worst of it.
Dylan is now one week post op. Over the past two days Dylan has been spiking fevers. His stomach hurts and he just seems off. I took Dylan to see his pediatrician and there were no obvious signs of infection. I spoke with Stanford last night and at their request I had lab work done this morning. I am just waiting now. I am also packing a bag for the hospital because if I don't we will most likely need it. I am hoping and praying it is just his body responding to the surgery or that he has a virus of some kind. I am praying it is not his liver that is sick or damaged from lack of fluid in his system. I guess we will see.
-Amber
Elevated heart rate due to pain level.
Dylan forcing a smile for his guilt gift.
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