I said I would post an explanation of my prolonged absence, and here it is. My very own adventure.. BTW Don’t ask about the dealing with the school during this.
It was November 8th 2012, and I was once again fighting to have my son admitted to the hospital. My son had started vomiting on September 1st and had not stopped. Three months of vomiting 10 to 30 times a day. He’d been hospitalized twice at that point and had had multiple trips to the ER and would spend up to 8 hours a day at an infusion center getting intravenous fluids. But no one could or would stop the vomiting. So what do you do when you fall through the cracks in the system of our healthcare? There really are too many to name. Every twist and turn in our quest to get care for our son resulted in another pitfall or roadblock that kept him from getting quality care. Quality care in a manner that should have had him back on his feet in a matter of days instead of months.
First, the illness that we were dealing with was not a common one. It usually takes years to diagnose. We were told on numerous occasions that he had the flu. He would throw up for two weeks straight, and then be fine. It was usually preceded by a cold or other illness that would touch it off. He had done this several time previously in the year. In April when they once again told us he had the Flu, I fought for almost three weeks to have them do something other than see him in the doctors office every other day. At the end of week three of vomiting 7-10 times a day they finally admitted him to the hospital. We, as parents, were treated horribly for not fighting hard enough to get him admitted earlier with him being “this ill”. He was as you can imagine severely dehydrated, to which the doctors had not yet done anything about. But we, the parents, weren’t fighting hard enough. The first couple days in the hospital he was examined by several doctors. They ran a few tests on him and I started to feel like we were going to get somewhere. But then it all stopped. By day five, the nurses were asking us what the plan was. The doctor that admitted him had left on vacation and left no instructions for his care. We ended up checking him out of the hospital. We followed up with one of the doctors we had seen in the hospital at four and a half weeks when he had finally stopped vomiting and she said since he stopped we didn’t need to see her again unless he started vomiting again.
Over the summer he continued to throw up at least once a week. Which after you have been throwing up for weeks on end seems like nothing. But, to the average person is still not normal. After watching him for a time, I called back the doctor that had said she should see him if he started vomiting again. Her first available appointment was in December. Ridiculous but true, so I took it. What else can you do? He started school in mid August. Being exposed to all the germs and bugs that float around school he was sick by the end of August. On September 1st, we started battling again. I went back to the doctor that had gone on vacation and he prescribed him a seasickness medication and told him to come back in two weeks. The frustration for me started in the that instant. The next morning I called my insurance and asked when we could change doctors. That too was an issue but after I explained the circumstances and issues we were having they agreed to move him to my doctor. That was one of the smartest things we could have done. The pediatrician just did not have the inclination or experience to deal with the realm of illness that my son was experiencing and probably would not have admitted it. I also started making daily calls to the doctor that said she needed to see him if he started vomiting again. My physician was checking on my son every couple days and was just as worried about his hydration level as I was. Unfortunately that meant taking him to the Emergency room for fluids every couple of days. After consulting with the doctor on this we were able to establish a hydration infusion schedule for him at an infusion center. This was amazing. But not a solution to stop the vomiting. Having the hydration in place we were able to space the doctor visits out a bit more. The next challenge was getting a specialist that could help him.
Remember the doctor that said we needed to bring him back if he started vomiting? Remember the daily calls I was making to her office? How about I tell you that the Emergency room called her twice as did his new doctor to tell her he needed to be seen. Well, here is where it starts to really fall apart. If you think we had issues up to this point, you haven’t heard anything yet. Miss I don’t have anything until December doesn’t return a single call. I start researching everything and anything I can on what options may be available to us. See at this point, they still have NO idea what is wrong with him. They want him to be seen by a pediatric gastroenterologist. Problem is the only one in over a hundred miles, won’t call us back and doesn’t have a appointment until December that I scheduled two weeks before he got sick! So I do a TON of research. Then I do three things. I call my insurance and ask what my options are. I get them and his new doctor to refer him and approve a new Specialist, over a hundred miles away, and I find an interesting article about a rare condition called Cyclic Vomiting Syndrome and ask the doctor if this could be what is wrong with my son. He was given this as a diagnosis.
We had a new specialist that we would have to drive over two hours to see and I am feeling very good once again about where we are headed. Walking out of his office was a completely different story. He didn’t spend more than two minutes with us, cut off everything we tried to say to him and finally told my son his diagnosis was that he thought he was faking it and that he should take a bucket and go back to school. I was so mad I couldn’t see straight. I couldn’t talk I was so mad. This poor kid that has been through so much, day after day of telling me he would do anything if we could make it stop. Having to get repoked everyday for an IV, sometimes up to eight times a day when his vein would collapse or blow out, he had to deal with tape allergy for a PICC line, Was being told he was faking it by a big obnoxious egotistical doctor that failed to listen to anything we had to say. We were driving home on our all day quest to a doctor that should NOT be dealing with children at all, when my son turns to me in the car, tears shimmering in his eyes and says to me, “Mom, do you think I’m faking it?” It once again all seemed to much for someone so young. I wanted to turn the car around and go yell at that “specialist”, at the very least. We were right back were we started. This was the end of September and he had now been vomiting for about Eight weeks.
Part way in October the nurses in the infusion center continued to be quite involved with his care. They gave us suggestions on things that may be helpful for him. That was quickly squelched when the doctor ordered them to stop making suggestions. Suggestions that WOULD HAVE helped him at that point. His vomiting changed several times. When on the 17th of October we took him in for his IV the nurse tells us that even with this Daily IV he is still dehydrated I decide something has got to be done. First we have to take him to the emergency room for more fluid. He gets two liters of fluid during his daily IV’s, in the ER they gave him four more. Which according to more than one doctor, he should have been admitted for being that dehydrated with daily fluids. But they didn’t. They knew he was being “cared for” so they sent him home. Then after three hours we went back to the infusion center for two more bags of fluid. He went home and went to bed. I went to work. Both literally and figuratively. On my lunch, I lost it. I even resorted to calling the doctor that told my son he was faking it. I demanded that someone do something. They asked me why I had waited to call them if he was still sick. I asked if they were serious. We were lucky to get a very helpful nurse who must have taken pity on a hysterical parent. We were also lucky that that doctor was out of town. That very helpful nurse made arrangements for us to be seen at an emergency room at a Children’s Hospital. See, we had a test scheduled for the beginning of November still. Just to check things out. Now they wanted it done as soon as possible. This kid should not still be vomiting. Again, I was feeling pretty good about finally getting something done. I got out of work, packed up my son and drove two hours in the dead of night to yet another hospital. I hadn’t slept in two days. I figured I would also call the original specialist in town on an emergency basis and see if they would do anything while I drove to the other hospital. This had to yet be my most eye opening experience. This twenty minute conversation boiled down to two things. She said the hospital here would have kept him if they thought it was life threatening and She only sees acutely ill children. So my kid who has not stopped vomiting for months, and has to have an IV to survive is not sick enough for her to see. I was appalled. When we got to the children’s hospital it took them less than an hour to decide to admit him. After two more bags of fluid.
Now we are once again in the hospital. We are admitted for the day. The test they were going to have mean doctor do in November, they do on an emergency basis there to make sure there is nothing else causing his vomiting and he has not done any damage to his esophagus. Everything comes back fine. His hydration level now is good and he has a hydration plan in place. They talk to us about options that might work for pain management and the usual, follow up with the doctors etc. We are sent home, with him still vomiting. But, one more test done. My exasperation was palpable. All we can do is teach him to live with it? When I ordered his chart from that hospital I realized why. They were also going on the basis of him faking it, from mean doctor. But the doctors there got to witness first hand what was happening. So I still do not know what to think of this. That they would not step up because he wasn’t actually their patient? The point is moot because shortly after this visit we were told that mean doctor had decided he was not capable of helping our son. I think that is the smartest thing he has ever said, but my guess is that it came from my very helpful nurse. So were were again left floundering. Not a single specialist capable of helping a very sick child.
When we went back to my doctor who had set up the infusion and had been helping us along the way, even he was frustrated. We had exhausted the specialist pool, we had to choose from and they probably weren’t sure it wasn’t from me insulting people. So going on the Cyclic Vomiting Diagnosis still we kept trying medications for him. When we needed more, the insurance fought back. They wouldn’t give him medication until he saw a Neurologist. Since the medication required to treat cyclic vomiting are typically migraine medications as it is a migraine variant. So, we started again. End of October we met with the neurologist. He wanted to change the medication and wait a month to see what effect it would have on him. He would however give us a referral to Lucille Packard Children’s Hospital for a consultation. A week later his vomiting changed again. His suffering was awful. Trying to drag him from appointment to appointment and he wouldn’t eat so he wouldn’t vomit if he went somewhere. It was horrible. Especially because he was sleeping 18-20 hours a day. He barely had energy to sit up to throw up. We kept basins in his room. I had once again been doing my own research and had reached the “somebody has got to do something limit”. He was vomiting almost 30 times a day in his 4-6 hours he was awake and not getting any nutrition at all. His system could not continue to function like that. Why were we the only people that thought this was an issue? I went to the doctor and the neurologist both with a suggestion from the Cyclic Vomiting Syndrome Association Website Forums,http://cvsaonline.org, and from individuals, I had consulted with about my son, had for resetting the system. The neurologist reluctantly agreed to try it. We tried medicating him to sleep for 20 hours hoping to “reset” his brain. Since he was already sleeping that amount of time, I did not hold out much hope for it working but they did allow us to do it at home. If it didn’t work they would admit him and try for a longer time period.
It didn’t work. November 9th we packed him up again and admitted him to the hospital. But I felt good. I had a plan printed out that told them how to process a “reset” and we were finally getting a doctor to take us seriously. When we started the admission process everything changed. They did not have a doctor on staff that felt comfortable preforming the “reset”. They wanted to try different medications and have other doctors look at him. This was close to the end of what I could take. But I would look at him and tell myself, “If you feel bad, imagine what he is going through.” It made me fight like a crazed mamabear. It even made me fight him. He begged to just go home.
This was the worst of the best for me. Week thirteen. Thirteen weeks of my child vomiting with not a person that could or knew how to stop it. There was one doctor that came in and said to us, “He needs to be here. He is a very sick boy.” I had to hold back the tears. That was day one. Day two she came in and tells us that they do not know what to do with him and are going to try to send him home. I was absolutely flabbergasted. You have a kid that is this sick and because you don’t know how to fix him, you opt to send him home? Shouldn’t the hospital be where he needs to be? She tells us that they are quantifying it by saying that we have a referral to go to Lucille Packard Children’s Hospital. We have been referred, but have nothing in place. I panic. I start thinking that it will be another two months before we get there and that he can’t hold on that long. The doctor suggests that when the hospital comes to tell us this we simply refuse. Tell them that we want to be transferred to Lucille Packard. It was that simple, It was that simple. We refused, and they tried to transfer us. We actually waited two days for a bed at Lucille Packard. By the time they had a bed ready, it turned out that the hospital wouldn’t transfer us. Said they wouldn’t approve a transfer there. Thanks for waiting two days to tell me that. So I asked the right question. Where would they transfer us? I was not taking him home. While we were waiting, he had started vomiting blood. I pulled out a list of doctors, that I had started traveling with, of hospitals that specialized in Cyclic Vomiting and gave it to the transfer coordinator. I suggested she find a hospital on that list that they would transfer us to. Within a couple hours we were in an ambulance being driven to the Univeristy of California San Francisco Benioff’s Children’s Hosptial. Our Salvation. The end of our very difficult journey of almost 15 weeks of vomiting. I know you have heard it before, but this time I felt it. I knew these people were going to take care of my son. When one doctor walked through the door and said, “ I can see what you have been through, but I can’t really see what has been DONE yet.” Then he proceeded to reassure me that they weren’t going to let him leave there until he was well and we had every reassurance that he would have continued and on going care.
That is what we had been missing. We had been falling though the cracks from doctor to doctor and facility to facility and not getting anyone to care about how sick this child was. Every doctor that walked into his room at UCSF was blown away this had been allowed to go on this long. They didn’t even need to preform the reset. They gave him food. Simple nutrition. They had to bypass his stomach to get him that nutrition, but getting him nutrition was a huge part of getting him well. In total we were in the hospital for twelve days. Twelve days for a child that the previous hospital was going to send home because they didn’t know HOW to help him. UCSF had him up and walking in 3 days. Had him down to vomiting only three times a day by the time we left the hospital to go home. 30 with blood down to 3 and he was getting nutrition. Nutrition that was staying IN his system. He had to have a feeding tube in his nose, and he would tell you that he would rather be stuck everyday for the IV fluids, But, that nutrition and those doctors that cared enough to want my child to get better is what made the difference.
We now drive the two hours for every appointment. We have caring doctors that keep track of and know how to treat my son. They have treatment plans in place for every scenario. They have reassured me that we will never again fall between the cracks when getting care from them. It really is too bad that it had to take someone being that sick to get that level of care. What has happened to our health care system? I will hope that our situation was a comedy of errors and that not everyone is dealing with the same thing. I will also hope that by putting my story out there it will inspire other people to stop accepting the level of care that they are receiving. There are Doctors who care and are concerned. Don’t give up looking.