Monday, January 12, 2015

Maddy's Surgery- A nightmare journey

**Let me preface this post by saying if you are in anyway squeamish, please do not read this post! It's a bit graphic in description. Thank you.**

Hospital Wagon Ride
 
Don't get me wrong from the title of this post. Maddy's actual surgery went well. The post op complications were a different story.  But let me back up. I wrote in an earlier post about Maddy's sleep study results and the need for a follow up consultation with an ear, nose and throat doctor.

We met with a pediatric ENT at the Mayo Clinic where we've been seeing all the other specialists. He quickly determined from all the data and a quick exam that Maddy should have her adenoids removed and possibly her tonsils too. He also wanted to do an endoscopy, which is a camera scope, down her throat to make sure there were not any other obstructions blocking her breathing. We had a chance to do the surgery before the end of the year, but it was only with a week's notice. We decided to get it done as soon as possible.

Other than having to wait around all day because there was an emergency with another patient and starting the surgery much later than scheduled, the surgery went great. The doctor ended up removing both Maddy's adenoids and her tonsils. The scope revealed some interesting things about Maddy's anatomy that may need to be addressed in the future. The ENT did want Maddy to spend the night in the PICU at the hospital partially because of her age and partially because of her disability.

The night in the PICU was mostly uneventful, other than the fact that Maddy did not care to be cooped up in a room and wanted out. The problem with that was the fact that she was hooked up to an IV. In the end, the PICU nurses were of great help as they rounded us up a wagon and made it possible to walk the halls with Maddy being pulled around like a princess. Maddy did remarkably well drinking liquids after the surgery. She ate a little that night. She ate even more for breakfast the next day and kept drinking well. All this meant we got to go home the next day.

Leaving the hospital
 
Maddy continued to do well at home that first day. When the second day at home rolled around, Maddy began throwing up. She could not seem to keep either liquids or solids down. We took her to the doctor that afternoon and she was prescribed something to help with the nausea. Those seemed to help, and by the evening, she was doing well again. I tucked Maddy into bed with me where she was sleeping post surgery. This was partly for comfort for her and partly to facilitate giving her medicine every four hours.

Then, at three in the morning, every parent's worst nightmare happened. Maddy woke up. I gave her another dose of Tylenol, as her previous dose had worn off. She asked for a drink. I gave her one. She took a drink, then began coughing. She coughed a couple of times and then rolled over like she was going back to sleep.

At this point, my mom came into the room. She had come to help out with Maddy post surgery. Mom said, "What's that on the pillow?" I couldn't really tell in the dark and asked Mom to turn on the light. There on the pillow was a bright spot of blood. Panic started to set in a little as I pulled Maddy to sit upright. Mom ran and grabbed me a towel to wipe the blood with. At this point, Maddy kept coughing and more and more blood was pouring out of her mouth.

We woke up Dave (as he was sleeping in another room). He must have been in a deep sleep, as it took him a minute to register what was going on. When he finally figured it out, he started the car. I threw on a coat, grabbed Maddy and jumped in the car. I just held her on my lap in the front seat. I was too panicked to let go of her. (Before I get lots of comments about not properly restraining her, let me just say it's an impossible thing to imagine blood pouring out of your child's mouth with no end in sight. Not to mention that our house is actually only three blocks from the hospital.)

Dave had called the ER ahead, so they were expecting us. When we got in, there was one nurse at the desk. She put us in a room and immediately called for help. Another nurse came in very shortly after that. They both tried to help us mop up the blood. Maddy had a large clot hanging out of her mouth. One of the nurses tried to pull it away, but it did not give. At this point, Dave was starting to panic. One of the nurses pulled him aside and I heard her telling him that if he couldn't be calm, then maybe he should step of the room for a minute so Maddy wouldn't seem him scared. That seemed to snap Dave out of it a little.

The bleeding did seem like it was slowing down, but it hadn't stopped. I totally lost track of time, so I had no idea how long it was from the time she started bleeding to the present. By this time, the doctor on duty came in. The nurses briefed him on the situation and he took a cursory look at Maddy.

I say cursory because He did not look in her mouth. He asked Maddy to open her mouth, but Maddy couldn't or wouldn't do so. She was just crying at this point because she wanted out of the room and out of the hospital. (as a side note, Maddy has never opened her mouth on her own for a doctor.) The doctor refused to look in her mouth by means of a tongue depressor. His reason was "There isn't a surgeon on duty and if her airway collapses, I can't do anything about it."

I was shocked! What did that mean? If my daughter's airway had collapsed on its own would he have done nothing to save her? I'm a lawyer. I get that there are terrible fears of malpractice suits these days. But what happened to the Hippocratic oath? What happened to doing what is medically necessary to save people? Why do we have a hospital with an ER if they can't do anything to help us there?

Luckily for my daughter's sake, the bleeding stopped on its own. By this point, the only thing that the doctor did do is to recommend we take her to a bigger town ER to be seen by an actual ENT to determine whether anything further was needed.  We picked an ER and then waited around for one of those doctors to call back to our ER. While we were waiting, Maddy wanted down. She felt so terrible all she wanted to do was lay on the floor. I couldn't convince her to lay on the bed or to let me hold her. When we finally got the paperwork straightened out, we all got in the car and drove for an hour to the next ER. Maddy managed to sleep a little on the way there.

Maddy got checked out, and thankfully the ENT said Maddy was looking good. There was no sign of a clot and her throat looked nice and clear. I can't tell you what a relief that was. We got some additional advice about medicine and running a humidifier to keep Maddy's throat as moist as possible.

With a quick stop by Menards to buy a new humidifier (our big one had broken a few weeks ago) and we finally went home. We didn't get home until well after 8 in the morning. Maddy took quite awhile to recover after that.

She still didn't want to eat or drink anything. In fact, we had to call her surgeon, who prescribed her a dose of steroids. Those helped immensely. Within two hours of receiving that dose, she was drinking large quantities of water. The next day she was eating.

Maddy did lose a few pounds during this ordeal. She's made up for it in the weeks since by eating us out of house and home. I can't really tell too much if the surgery has improved her sleep or not. She got spoiled by sleeping by me during her recovery and so now we are breaking that habit again. She is back in her own bed, but has been waking up at night. She has been really restless in her sleep, so it's possible that she's either been dreaming or having growing pains. I've been trying to use the essential oils to help alleviate the restlessness as much as possible. We will have to see just how much she improves in sleep before the next sleep study.

Sunday, January 11, 2015

Testing Results Part 2

I wrote about the results of Maddy's sleep study in a previous post. The other test that yielded results during Maddy's week at the Mayo Clinic was the neuropsychology tests. This involved several survey and play type tests where a physiologist watched Maddy interact with one parent (in this case Dad) and a trained worker over a video feed.

Most of these tests came up with typical or "normal" results. The one that did not was the ADOS test. In a nutshell, this is the golden standard for diagnosing autism. (click on the link for more info). The test (which is observation based) did show Maddy as being on the low end of the autism spectrum.

At first, this was a surprise to us, as every other doctor we have ever seen has told us Maddy does not have autism. But, after hearing the explanations from the psychologist, it made more sense. She told us that while she really doesn't think Maddy is autistic, she does have some of the characteristics of the disorder.  Some of the score is based on communication. Maddy does not speak, does limited signing and really has a very basic level of communication at this point. That alone almost puts her as being on the spectrum. In addition, Maddy did do some level of "ignoring" and played in her own little world during the test. All of which can also point to autism. What doesn't point to autism in Maddy's case is her ability to make and hold eye contact, her interactions with others and her response to affection both in seeking and giving it.

At this point, I still feel that we don't have a true diagnosis, as both the medical doctor and the psychologist stated they don't feel this is really the only or the final answer. So far, it feels like we have more questions than actual answers to anything. We will keep carrying on to try and find more answers for Maddy.