Tyler’s hospitals stay 2018

Since Tyler’s 4th birthday is this week, a birthday we weren’t sure he would make, I figured it would be a good time to finally tell y’all all the details of our hospital trip in Alabama. Most of you have never heard even half of this. I kept it to myself in hopes that I’d find an attorney, but it seems unless your child wanes close to death, or you have a good bit of money, an attorney won’t touch it. If y’all know someone, have them get with me. 

I do want to preface this by saying the treehouse ‘mission’ was probably the saving grace of the trip. So, miss Brenda, if you read this, please know that you made the trip slightly more bearable. I’m pretty sure you saw my anger by the day we left. 

We also were blessed to have mostly fairly good nurses. A couple left a little to be desired, but most were very helpful. 

I write this to let you know that hospitals aren’t always safe places with well-trained individuals. My mom has always joked that 50% of doctors graduate at the bottom of their class, and while it’s said to get giggles, it’s completely true. Out of the 50 some-odd doctors we saw, only one during our entire trip had heard of MTHFR- Tyler’s gene mutation- and even that doctor didn’t really know what it was. And yet, his gene mutation affects 40%+ of the population. 

Names have been shortened to initials and hospital names dropped so as not to slander anyone. 

August 12, 2018 started like any other day. We were at the farm, working with the horses and clearing land. School was starting the next day, so we had been preparing. Tyler had taken a nap,  and was just awakening. We weren’t living in our tiny house yet, so he had slept in the camper where we were all staying. Ashlynn was down playing on the porch of our tiny house. Kane was off with his dad for the day, and Kevin was on the tractor in the pasture. 

Now, if you don’t know Tyler, he loves everything mechanical. Trucks. Cars. Semi trucks. Trains. Air planes. Motorcycles. Helicopters. And especially tractors. As he woke up that day, we began to walk down to the porch for him to play with his sissy, and he had eyes glued to his daddy. I was a few steps behind him. 

I kept reminding him to look where he was going, but the lure of the tractor was too distracting for a curious 3 year old. The next few minutes would change the course of the next few months for all of us. 

Kevin and his mom had been spending the day clearing land to run pasture for the minis she had recently brought home. They had been in a large round pin, but needed more room to run. As they cleared, they burned the excess brush. It had been a while since they had burned, so all that remained in the fire pit was smoldering ash. 

As Tyler and I neared the area of the fire pit, he began veer right toward it because he was looking behind him as he walked. He wasn’t terribly close, so I wasn’t worried. I opened my mouth to tell him to watch out, and before I could say a word, everything changed.

He tripped- over what we are still not sure- and somehow, even though he hadn’t been close enough to fall in, he slid into the fire pit face down and head first. His fast reflexes kicked in and he flipped himself, not sustaining any damage to his face, but leaving his left arm fully in the embers. He was wearing a sleeveless shirt. 

I acted quickly and grabbed his feet, dragging him out. By the time I had him out, Kevin had heard my scream and had scaled the 6 foot pasture fence with one jump. He is a trained first responder, so he snatched him quickly and ran to his moms house while screaming for me to call 911. The remainder of this is my notes on the next two months that followed. 

8/12 life flight and ambulance for 3rd degree burns

8/13 admitted to hospital in Alabama  

1) we were never told at the start that they had never dealt with burns as bad as his in order to have informed consent to his hospital care

2) we never had the risks of anesthesia discussed with us, we were just handed consents to sign. 

3) there was never consistency with who changes his dressings, and most don’t know what they are doing. 

Sometime during this particular leg of the trip- I’m not sure the exact day- we had a nurse named N. She did not flush his PICC line or check vitals the first day at all. The second day, after talking to the night shift and finding out that it is supposed to be done every shift, I asked her to flush his PICC. She came in and did it the wrong way, by not flushing with saline, not checking for blood return to make sure it hadn’t clotted, and not using much heparin to prevent clotting. The same day, when paged to help with cleanup after he threw up his medicine all over himself, she did not show up. I had to clean him and then track her down to get a new wrap for his chest to hold his bandages on, and get new socks from the desk after requesting them and not getting them. She was reported and we didn’t have her again. 

8/24 discharged for home, with twice weekly dressing changes at Dr B’s office. 

8/27 first dressing change- all is well, no signs of infection.

8/30 second trip. The dressings stick and Tyler screams through the change. Dr B says he wants future changes to be under sedation in the ER.

9/3 first ER change on Labor Day. I had asked to be sure they would be available to do it since it was a holiday, and was assured they would be. We show up, the ER hasn’t been informed we are coming, and they tell me they usually don’t handle cases like his. It takes them an hour and a half for them to finally figure out where we are supposed to go. Once the bandages are removed I see a light rash on the front edge of his armpit where he still has good skin. He has been rubbing it saying he itches. I get told it is probably heat rash. Dr R2 changes the dressing and rewraps it too loosely. By the time we get home, they are falling off and I have to rewrap the top bandage myself. 

9/4 Tyler spikes a fever and starts getting really sleepy. I call Dr B and he tells us to come in to the ER. We arrive, the ER doctor notices a rash under his wraps on his belly, and says it looks like staph. He has no other symptoms besides the fever and rash. He is swabbed for strep and labs are drawn. He is given Rocephin and started on two broad spectrum IV abx, and admitted to make sure there is no infection in his burns. Dr M checks him when we get to our room. While doing the standard check-in questionnaire, he hears that Tyler is not vaccinated, sees two mosquito bites on his stomach and says it looks like chicken pox. They disregard the ER doctor’s suggestion that it could be staph. The whole night he is not allowed to eat or drink because of surgery the next day.

9/5 Dr B checks Tyler in the OR and he says the burns look clean. I ask about he redness on his armpit and don’t get a clear answer. When he is rewrapped, his shoulder is only covered by kerlex and he is able to get a finger to some of his third degree burns and scratch them. 

They finally take a urine sample. 

9/6 all blood tests come back clear. His white cell count is slightly elevated, and his urine is slightly abnormal. They decide it must be a UTI, even though he has never had symptoms. They stop IV abx and switch to oral. 

9/7 Tyler has another dressing change in PICU before we are discharged and I am in the room during the procedure. His burns all look clean still, but his armpit is red, blotchy and inflamed. I ask again what it is, and am told it is probably from him rubbing it. He is wrapped in a way that his dressings separate at the armpit when he moves his arm, and he can get fingers in there. I point it out and they just put another ace bandage over it to try to cover the armpit. We are discharged with prescriptions for antibiotics, a medicine to help his itching and an antifungal.

By the time we get home, his additional wrap has shifted again. He is able to push it aside and get fingers in there, which he does frequently because it is bothering him so much. He complains constantly, and starts to now say it hurts. 

9/8 I am unable to fill the antibiotic prescription because it is written in mg instead of ml. It is a Saturday so I can’t get the doctor to send a new one. Thinking it is a UTI, I decide to treat the way I normally treat my own since I can’t get the prescription. I grab colloidal silver, d mannose and probiotics. 

I am able to fill the prescription for the anti-itch medicine. We go home and I begin to treat him. 

Tyler wakes up 5 times that night complaining of pain in his armpit, and actually asks for Motrin when he usually fights taking medicine. 

9/9 Tyler sleeps half the day and complains of pain all day. We continue treatments for the UTI and give Motrin for the armpit pain. He never shows any signs of urinary discomfort through any of this. 

He is up from pain again several times that night.

9/10 Tyler goes to preschool. At 11am I get a call from his teacher that he is having chills, an elevated temp of 99.9 and some blood coming through his dressings on his elbow. I go get him and call Dr B. Tyler spends the afternoon crying in pain and refusing to eat or get out of bed. We head back to the hospital that night in the midst of a hurricane and spend 7+ hours in the ER. During the 5 hours just in the waiting room, Tyler begins to emit a strong odor that smells like yeast and spikes a fever. Labs are drawn again and urine is checked. 

9/11 we finally get admitted to the hospital and get settled just before 5am. Dr R2 comes in that morning and says he thinks it’s an infection they missed the week prior, it probably never was a UTI, and that they really dropped the ball. He has a dressing change that day and his burns are covered in puss. They think he has pseudomonas, but won’t know for sure until the blood tests come back. They start him on two broad spectrum antibiotics. He is scheduled to have daily dressing changes and 4 times daily “skin-bleach” baths with dacens solution. His fever finally breaks at midnight that night after being medicated, it not coming down, and at my request the nurse allowing it to run. 

9/12 Tyler’s orders are messed up and he is allowed a breakfast tray, so they can’t do the sedated dressing change. Dr H says he forgot to tell the night crew that the procedure had been moved up. They schedule him for the OR the next day. His labs come back showing Staph, but they aren’t sure yet which strain. A patient care rep comes to talk to me about the day’s screw up. 

9/13 the labs come back showing Tyler has MRSA and his abx are changed. Dr B changes his dressings and puts on a wound vac. He says Tyler’s burns look clean and have no signs of infection after the dacens. In the recovery room, the nurse gives Tyler a partial dose of his morphine, and takes the rest as she leaves for break stating “I don’t think he needs all of this” as she walks out. She charts that she gave the full dose and he spends two hours screaming in pain until his floor nurse can get approval from the doctor to give more. 

9/14 Dr S from infectious disease comes in to speak with me about my request to take Tyler off isolation. She tells me he will probably be on isolation for the duration of his stay because he got MRSA. She continues to say that he will likely be on isolation at every hospital stay for the rest of his life after contracting it. 

We realize halfway through the day treat the tape for the wound vac is across the second degree burns on the back of his shoulder and call for the doctor. Dr M comes in and says that they are “all but healed” and it doesn’t matter. There is blood showing in one and Tyler keeps grabbing them proclaiming how much they hurt. Dr M finally comes back before dinner to remove the adhesive from one of them and cover it with gauze. 

9/15 Tyler has his wound vac changed. Dr G says his burns still look good and grafts will be scheduled Tuesday. 

The recovery room is not informed after the surgery that he is to be on isolation and he is put in an open recovery bay. 

Tyler cries and sleeps most of the day constantly screaming hat he is in pain. He is up and down all night. 

9/16 Dr R comes in and says the ace wrap on his arm is too tight and loosens it. He also decreases the pressure on the wound vac. Tyler finally stops complaining and starts playing. 

9/18 Tyler is finally able to have grafts. He comes through surgery well.

They suggest a Tylenol IV after surgery and I once again tell them never Tylenol. Dr H comes back and tells me that the Narco he has been on contains Tylenol, when I had been told it was straight hydrocodone. We switch him to

oxycodone

9/19 internal audit comes to talk to us because of all that has happened during our stay. 

9/22 they change Tyler’s wound vac and one strip of his grafts hasn’t stuck. They have no reason for it. They say they will check again Monday and decide from there what to do, but this will likely set us back 1-3 weeks. Tyler is in pain again from the wound vac and complains constantly that his arm burns. 

Tyler comes out of the procedure that day with dark purple circles under his eyes. The doctor on call for the weekend says he isn’t concerned about it and doesn’t give an answer. He takes blood to check if it might be anemia, but otherwise brushes us off saying Tyler is probably just tired. Blood tests come back and Tyler’s blood iron is low. They try to convince me to have a blood transfusion but since it isn’t dangerously low, it isn’t required. I refuse, and instead focus on his nutrition.

9/23 they run blood tests again and Tyler’s iron levels have gone back up. The doctor on call thinks Tyler had the blood transfusion bc it has improved so much. He still offers no explanation for the circles.

9/24 I notice a spot on the back of Tyler’s shoulder that had grafts applied and is easily accessible by little fingers, covered only by clear plastic bandages at this point. The ace wrap has pushed back and left it exposed, and I worry that Tyler might disrupt the healing process. 

I am told that Tyler’s protein levels are very low, and that’s likely why the grafts didn’t stick. Dr R1 admits to me they’ve never dealt with burns his deep before and they were more hopeful they would stick. 

That night, Tyler is given Ativan to try to sedate him for wetting his wet-to-dry dressings, and has a horrible reaction. He starts hallucinations, blurry vision, and screaming fits for several hours.

9/25 the nutritionist comes to talk to me and says Tyler is barely low in proteins, and the doctors were comparing his numbers to that of a full sized adult. 

His dressings are changed and they once again don’t even look at his armpit. 

9/26 Tyler begins to complain of pain again and the smell starts returning to his armpit. 

The pediatric resident filling in for dr H for the day (dr f) comes to talk to us and doesn’t even know the nutritionist has been by. 

The nutritionist and Dr P with pediatrics decide they want to start Tyler on IV (TPN) nutrition. They want to give him amino acid drinks with aspartame and I refuse because of the health implications. 

When PT changes his bandages that day, they are stuck to him. The nurse the night before had been instructed  the wrong way to wet them overnight and hadn’t removed far enough, so they stuck to his skin. Most of his grafts rip off with the dressings, and he is awake for the procedure asking me why they are cutting his skin off.

That night, Tyler is started on TPN nutrition and has a bad reaction with red, hot cheeks, (looks like hives) a puffy hurting eye, and a flushed back. We didn’t notice the back right away or connect it, but when they came to rewet his dressings, I asked one of the nurses why his back was so red. It didn’t click until I looked up anaphylaxis symptoms. 

He has no fever, but he gets nauseated as soon as they start the TPN and refuses to eat dinner. They say they’ve never seen anything of the sort before and decide to disconnect it while they research it. His red face goes away within 30 min but his eye takes several hours to go down. They want to start him back but I refuse. 

9/27

Dr P comes through and says they want to do a transfer to UAB or shands. They decide this is too much for them and he needs a specialty center. 

Dr B comes in to change his dressings and begins to yell at me about his nutrition. He says he has been told I’m refusing to do anything asked. The only things I have refused are 1) Tylenol 2) a “just in case” blood transfusion that ended up not needed and 3) an amino acid drink with aspartame that I was told was just a suggestion. He starts yelling at me that there are no studies showing that aspartame causes cancer, even though I’ve only said I don’t give my kids artificial sweeteners and given no other reason. He says Tyler’s grafts didn’t stick because I wasn’t complying. His grafts started coming off 9/24 and they didn’t suggest the drink until 9/25. Through the conversation he admits the grafts weren’t sticking well from the start, and when confronted that he had told me all but one strip looked good the first day of the wound vac change, he backtracks and says yes they did look good then. 

They get an ok the transport to shands the next day

9/28 M tells us she was surprised our first week that they kept us because they never keep children with burns as bad as his- they usually send them to UAB or at least the medical center next door.

From the time we sign transfer paperwork, the doctors don’t come see him again. Dr P pops in just to say bye, but nothing else. Surgery doesn’t come by at all. No one even checks his dressings, which are supposed to be rewet every 12 hours minimum. He ends up going 48 hours without anything done to them by the time we transfer hospitals, and bandages stick worse than before. The only care we get is from the nurse.

We get transported to Shands at 7pm

9/29

Shands takes his dressings down and checks his burns. They stick terribly. Dr Islam is in the room and gets to see his burns. He says we may be able to use temporary pig skin grafts (xenografts) to heal Tyler but he needs to put him under anesthesia to see. He also says sacred heart has a contract with them and is supposed to send all burn patients to them. He is noticeably furious says he will look into what happened.

Furthermore, he says that the constant sticking of the dressings does nothing but disrupt the grafts and make them come off, and it’s very unusual for grafts to come off in a healthy child. 

They do xenografts and release us by October 3.

Six. Days.

That’s all it took for them to fix what had been done wrong. To do what they couldn’t do in 7 weeks.

I stopped taking notes when we got to shands because I finally got doctors that respected me as the mother, allowed me to use homeopathy along with the medicines, and reapected my decision for no Tylenol. There are good doctors, but sadly, you have to be prepared to fight for proper care.