Recent events have prompted me to put pen to paper & share my thoughts on MY child as he made the transition from a children's hospital to that of an adult hospital. It's been a transition we looked forward to because that meant he beat the odds and God allowed him to live to adulthood. But, with the transition, comes many issues and many misunderstandings. We are now a little over six months of making that transition and are concerned with how Clayton is perceived and how we are perceived. I am in no way "bashing" the adult hospital. Instead, I'm trying to define what it means for Clayton to go from a child who battled CHD for almost 11 years with his health care being given at one children's hospital, being transferred from that hospital to another children's hospital to receive 2 heart transplants and, finally, being transferred from the second children's hospital to an adult hospital to continue receiving health care.
I truly believe that everything Clayton went through as a child should be taken into consideration before anyone makes assumptions about him or tries to give him advice. Yes, other's have had heart transplants BUT, to me, it's totally different to be a child and have 3 closed heart surgeries, 2 open heart surgeries and 2 heart transplants. What an adult experiences after transplantation and how they relate to others, their experiences, etc is completely different than what Clayton has gone through. He's lived with heart disease for 22 years, his whole life. He knows his body.
One of the "differences" I want to touch on is the fact (due to recent scientific studies) that CHD plays a huge role in the development of learning disabilities. There are many studies that point to this. The cause and severity of the learning disability seems to depend upon many factors: the age at which surgeries were done, how many surgeries were done, what surgeries were done, what the CHD was, etc. But, the common thread is that more often than not, a child born with CHD will have some type of learning disability. This was "picked up on" at a very early age with Clayton. He didn't speak until almost 2 years of age. He had a severe speech impediment when he did finally speak (in fact, I was the only one that could understand him). He spent from 4 years of age to almost 11 years of age in speech therapy, At that point, it was decided that he had improved to the best of his ability. How has this affected him today? Keep in mind that I'm writing as his mother, not someone specialized in that field. I can only relate what I see with Clayton.
Because of his speech impediment, Clayton speaks "brusquely". This is not because he wants to be ugly but rather that, throughout his years in school, he was made to properly enunciate each word. He was constantly corrected. As a result, years of speaking this way carried on into his adulthood. To those that know him, they overlook it and understand that it's the way he talks. To those that don't know him, they view it as him being "ugly" or disrespectful. He talks slowly and harshly because he was "patterned" to do that. I think also when you factor in that he was living on only 70% of oxygenated blood during his first 10 years of life, this has something to do with it. How hard is it for you to talk when you've run a mile? Think of how difficult it must have been for him. We, as normal people, have anywhere from 98% to 100% oxygenated blood. One of my fondest memories after his first transplant was when he and I were taking a walk. He just stopped and looked at me and said "Mom, I can walk and talk at the same time!". He'd never been able to do that. So, before you assume that he's being "ugly" or disrespectful, take into account what he went through most of his childhood years and let that factor in. It's just how he talks!
When Clayton entered kindergarten, his teacher told me that she thought Clayton had a learning disability. She was quick to point out that it didn't follow the "normal" learning disabilities such as ADD or ADHD. It had similarities but could not be labeled that due to the differences. There was something there that was preventing Clayton from learning in the usual way. I brought this to the attention of his cardiologist. Her comment was that she wasn't surprised. That she too had seen many children with CHD that seemed to have learning disabilities. She speculated that it stemmed from the frontal lobe of his brain not receiving enough oxygenated blood and that we would have to be diligent with our school board in educating Clayton in a way that he could learn. Due to his low saturation (oxygenated blood), Clayton was only able to attend school for 3 hours, 3 days a week. After 3 hours, he was totally exhausted. Up until transplant, Clayton took daily naps. It was the only way he had the energy to get through each day.
Later in his school years, we realized that Clayton could not learn in a classroom setting. He became very easily distracted. Due to the clubbing of his fingers, note taking was impossible for him. The pain was too severe and his fingers couldn't write as fast as the teacher talked. It was also during this time that we realized that Clayton had a severe reading comprehension problem. It was speculated that he concentrated so hard on pronouncing each word that, by the time he finished reading a sentence, the meaning of the sentence was completely lost to him. If he read a paragraph, he had no idea what the paragraph was about when he finished reading it. BUT, if someone read him the passage, he could almost verbatim recite it back to you and tell you what it meant. To this day, Clayton learns either from hearing something or experiencing (hands on) it. He can take a motor apart and put it back together but don't ask him to read the instructions and perform the task. He just can't do it.
While at both children's hospitals, Clayton was highly thought of. He was known as the child that did exactly what the doctors asked. He was always on time with his medicines, always willing to talk to others in a positive manner. At both hospitals, the medical personnel referred to him as their ideal patient. He always had a smile, always had a positive attitude, always lived life to the fullest and never asked "why me?". He was always full of hope. I guess with Clayton being at both of the children's hospitals for 11 years each, the medical personnel "knew" him. They took the time to listen to him and to take seriously any complaint he had because he has never been one to complain. As they used to tell us "If Clayton says something isn't right, it's not right". They knew this because of their years of experience with him. they knew to listen and to take his concerns seriously.
This leads me up to the transition to an adult hospital. Again, I want to reiterate that I'm not bashing at all. We in no way doubt the medical personnels ability to treat Clayton. We know without a doubt that Clayton is going to the best hospital in Georgia and, quite frankly, in the United States. So, the problem lies not in our confidence in the staff but in the lack of communication between staff and us. It lies in the fact that this hospital knows nothing of Clayton except what they read on a chart. They don't know how he speaks so he appears to be "dissatisfied" to them. They don't know that when he says "something's not quite right" that he's not just trying to get attention or just loves to complain. All they have to go on is numbers on a chart, diagnoses on paper. They don't know him personally because they haven't worked with him long enough to know him. Just as we're told to listen to what the docs say, shouldn't the docs also afford us the same respect? Let us share what we know so that Clayton can receive the best possible treatment. Take into consideration that we, as his parents, have lived with him for 22 years, that he has lived with his body for 22 years. There's been quite a few times in Clayton's life when he's had this almost "6th sense" about things concerning his health. We, as his parents, have learned that when he has these thoughts or feelings, we need to listen.
Now to get to the crux of the problem here. Upon transferring to an adult hospital, the first thing Clayton was told was "we're not going to mess with your medicines". What's the first thing that happened? They messed with his medicines. They asked him to try a medicine he'd been on before and had had a reaction to. Clayton refused. The staff was persistent. After many days of discussing the pros and cons with Clayton, he decided to make an appointment with his new cardiologist to talk it over. I, myself, felt as though I were between a rock and a hard place. I didn't want to encourage Clayton to take it in case he had another allergic reaction to it. I didn't want to discourage him because studies have shown that this particular drug reduces the risk of graft coronary artery disease. I had told him that if he didn't, and he developed graft CAD again, chances are that they wouldn't give him a new heart. All of us were an emotional wreck. We knew what the drug could do to Clayton and, on the other hand, we knew what not taking the drug could do to Clayton. It was a choice between 2 evils. Do we go out on a limb and try again? Do we play it safe and continue to refuse? So, days passed and Clayton decided that he'd give it a try.
Off we go to consult with the cardiologist. Before speaking with the cardiologist, a transplant coordinator came in and talked to Clayton. In the talk she said, and I quote, "If you don't try this medicine, and you need a new heart, we will NOT list you.". So, even though Clayton had decided to give it a try, she left him with no choice. I probably need to back up here and explain that a couple of weeks before this meeting, Clayton had a cath. During the cath, a cardiologist went through the wrong groin and attempted to get through the femoral artery that had been obstructed for years. The result was a huge (maybe softball-sized) hematoma. Why did she go through the wrong groin? Because the transplant coordinator failed to read his chart. So, to make things worse, Clayton was upset with what happened. To this particular coordinator, him being upset translated into him not trusting the staff. This is not how Clayton felt. Yes, he was upset and some trust was gone but he still knew that he was being treated at the best hospital he could choose. Even medical personnel are human. They make mistakes just like we do. Well, this coordinator felt it her duty to tell Clayton not only would they not list him but that maybe he needed to find a new hospital since his trust in them was gone. She put words in his mouth. He never said he didn't trust them. He just said that he was upset that a mistake like that happened. Anyway, let's continue on...
Let's fast forward about 10 days after being on the new drugs. Clayton began to tire out, become breathless, have palpatations, become dizzy, etc. He reported those changes to the docs. They said he was dehydrated. He had labs done. He was not dehydrated. A week passed. His symptoms worsened. The whole time he's telling them that he needs to come off the new drugs. They're telling him it's not the drugs. Alone, I would cry because I was seeing my child revert to how he was before transplantation. I was scared I was losing him. Around Clayton, I was upbeat and offering hope and trying to come up with "easy" reasons this could be happening. Inside, I was falling apart.. Clayton called the cardiologist again after about 4 weeks of the symptoms continuing to worsen. It was speculated that he had come in contact with a virus. That he needed to give his body time to over it and heal. The cardiologist looked over recent labs of Clayton's and found that his levels were worsening. The trend was found to have started at the time Clayton began taking the drugs. The drugs were stopped. Then, the fevers came. Drug regimen couldn't keep them down. He had to go to the ER in our hometown. By this time, his saturations had dropped from 98% to 92%. Whatever was going on was hitting every organ in Clayton's body. Again, cardiology was called. (this whole time Clayton is insisting it's the drugs). He was told to come in for an office visit.
So, off we go for another office visit which resulted in a hospitaliztion. After labs were done, it was discovered that Clayton's liver was taking a hard hit. His hemoglobin was down from 14 to 7. He had lost half of his red blood cells! Again, we conveyed our feelings that it was the drugs. Infectious Diseases was called in for more blood work to rule out the parvo virus. After talking to Clayton and being presented with his symptoms, ID said "It's a good thing you stopped the dapsone". Their findings were that it was the dapsone. Well, cardiology would still not agree with that. Hematology was called in. Hematology's ruling was it was the rapamune. Again, cardiology would not accept that. They were waiting on the results from the parvo test before giving a definite diagnosis. We completely understood that they wanted to make sure they didn't overlook something and declare Clayton allergic to rapamune without exhausting every avenue. I, myself, was torn. I didn't want it to be rapamune because I wanted a little more protection for Clayton against graft CAD. Then, again, I didn't want it to be something really bad. I just wanted a straight answer. Instead, we received differing answers.
The three days he spent in the hospital was frustrating. The first day he was told he would be receiving a blood transfusion. After waiting all day, we finally saw another cardiologist and was told that had been put on hold and instead, Clayton would be given IVIG. We had no idea what that was and it was not explained to us. That same day, they stopped another of Clayton's drugs because it has the tendency to cause anemia. Didn't matter that Clayton had been on it for 11 years and had never had a problem. Again, we weren't told it was being stopped until the nurse came with his meds that nite and his drug wasn't there. We asked to speak with a doc. Someone who was totally unfamiliar with Clayton's case came in and told us that he didn't know why they stopped it.
The following morning, we were again told Clayton would be receiving a blood transfusion. A nurse came in with a bag of something that was definitely NOT blood. Upon questioning her, we found out it was magnesium because Clayton's magnesium had dropped by 0.2. Upon Clayton refusing the magnesium and asking to speak to a doc, the nurse told him it was standard protocol on the floor to administer magnesium without the doc's consent. Clayton would not allow her to hang it. Upon further discussion with cardiology, ID and hematology, it was said that his level was not low enough to warrant being given magnesium. We waited all day again on a blood transfusion that never happened. We weren't told until late that nite that it wouldn't be administered. Instead, it would be administered the next day.
So, the next day comes and we're again waiting on a transfusion that never happens and is never told to us that it wasn't going to happen until we asked. We were told that he would be released to go home that day. What's the diagnosis, you might ask? There isn't one.. One of the cardiology docs told us that as soon as Hematology made a ruling, we would go home. Well, hematology said it was rapamune but cardiology didn't agree with that. Again, I understand their hesitancy to make rapamune the culprit. Anyway, Clayton got his walking papers with instructions for his meds. We head home, still uncertain as to what happened but also knowing in our hearts that rapamune was the culprit.
The next day, a transplant coordinator calls Clayton and says "Well, you snuck out on us." Ugh! How can you sneak out when you have your discharge papers with home instructions and instructions for a follow up visit? The coordinator then tells Clayton to stop one of the drugs, that his cardiologist did not order Clayton to resume it. Clayton tells her that he has it right there in black and white saying to take the drug and how much to take.. Later that day, the coordinator calls back with an apology from the doc to Clayton and with instructions for Clayton to (you got it!) take the drug.
So, forgive me if I'm wrong, but wouldn't you be frustrated too? Also, during that time someone asked Clayton on Facebook what the docs thought. He replied that they had their heads in a hole in the ground and didn't know what was going on. Well, this comment was taken the wrong way. The docs did, in fact, tell us that they had no idea what was going on. Maybe Clayton could have worded it differently but, then again, you would have to know Clayton to know that he meant nothing deragatory with that statement. The docs were looking everywhere for answers (who knows? they may have even been considering the soil!.. lol) .. Sorry but I have to make light of it. The end result of all of this is that it was, in fact, the new drug they had put Clayton on. So, we went through all of that to have the diagnosis turn out to be exactly what we thought.
Throughout Clayton's life, doctors have stressed to me how important it is to pay attention to any little change in his health and to make a note of anything that may have changed in his life because, just a little change, could be the cause of what I was seeing. It could be a change in diet, exposure to a cold or virus, a change in medication. So, when the change started, we did what we had been taught to do.. We looked at what had changed. The only change evident to us was the introduction of the new drugs and the removal of the old ones. So, to us, it made sense that the drugs were the culprit. I want to say here also that this is the first time the hospital or the doctors have ever seen anyone react to this drug the way Clayton did. It's not listed in the side effects. This just doesn't happen..
So.. Do we not trust the hospital? Yes, we DO trust it! Do we not trust the doctors? Yes, we DO trust them. Instead of just immediately ruling that it was the rapamune, they exhausted every avenue to rule out anything else that could have done this to Clayton. For that, we admire, respect and trust them! Do we want to go to another facility and go through someone getting to know Clayton again? NO! We do not! We are completely satisfied with the care these doctors gave us! Would we like better communication between staff, recipient and caregivers? MOST DEFINITELY! Ya see, Clayton and we (his caregivers) are used to being told beforehand what procedures are going to be done, what drugs are going to be stopped, what drugs are going to be started, etc. We are used to "being in the know". We are not used to someone just coming into his hospital room and doing whatever they please without any explanation. We want to know what you're doing and why. Clayton has a right to know that.
I really believe that most of the issue comes from Clayton being a new patient of this hospital. The staff doesn't know him like we do. They don't know he's not a complainer. They don't know his tone when he speaks ( a nurse even had the audacity to tell my child to speak proper.. I should have corrected her and told her it's "properly"). They don't know that he's willing to do whatever they ask, as long as it's not something he knows he can't do or a drug he's been told in the past that he's allergic to. But, don't assume because we didn't have the "perfect" stay, we're dissatisfied. We realize there is a learning process and we're willing to hang in there until the staff "learns" Clayton and us. Stop assuming everything he says is said in a negative way. This is the third hospital Clayton has had the fortune with which to have a long term relationship. With each hospital and each doctor, there's a learning process. Give us time to get to know this hospital and the staff.. By the same token, take the time to "know" Clayton before rushing to conclusions. We're not of the mind that doctors are God. They don't always have the answers. BUT.. with this hospital, as with the others, we've found that they will turn over every stone to find the problem. They take their time and use their knowledge to research the symptoms instead of just going with what seems to be staring you in the face. We appreciate that. We hope that you can appreciate that, while in the process of looking for answers, we get frustrated. I don't know anyone who wouldn't. If we can't be honest and voice how we feel without others jumping to conclusions, then maybe we should keep our opinions to ourselves. But, at the same time in doing that, we're making it harder for the next Clayton that comes along.
So, to sum it up.. Before jumping to conclusions or assuming anything, it's always a good idea to really know and understand the journey someone has made which has shaped his life. I think when you look at the whole picture and you figure in all the data, the context of what someone has said may indeed be totally different than what you assume it is. As I've said so many times before in my group, it's impossible to tell tone when reading the written word. Let me break it down even futher with a scenario. Suppose someone speaks a language you don't understand and this person comes up to you and asks you, in his language, "would you like a large sum of cash". You think you understand cash and you mistakenly assume he's trying to rob you so you call the police & the man is arrested simply because you misunderstood what he was saying and didn't take the time to really listen or find someone who could interpret what he was saying. You've, in fact, crucified someone simply because you didn't understand his language. This has happened many times in Clayton's life. He's been judged unfairly simply because someone doesn't know him well enough to understand what he's saying or understand his intent due to the way he speaks. Clayton has never said he was dissatisfied with the doctors or the hospital. We're totally happy with the hospital & staff.. We just feel like communication between parties could be better. So, if I were filling out a satisfaction survery, this hospital would receive high marks in everything but would receive a "Needs Improvement" in communication. That's really not quite so bad!