Friday, January 25, 2013

A week in the life of a scared mommy and a sick little boy

To say that this past week was probably the longest week of my life, is an understatement.

I am still blown away that it manifested like it did, but beyond thankful, in the end, everything is going to be ok.

Last Friday started like any other Friday in our house. All 5 boys went to school and I went about my daily routine. My in-laws were in town from Texas, because it was a 3 day weekend, so they picked up the little ones from preschool for me. At about 1:15pm, I received a text from my mother in law telling me that Matthew came home from school and wanted to go to sleep. I found it very odd, since this is totally out of the norm, but chalked it up to perhaps he played hard at school!

At 3pm, he woke up crying, tell me his leg hurt. He had to go to the bathroom and would not walk. I actually thought he was being a hypochondriac and urged him to toughen up and go pee! Clearly, I am not winning any Mother of the Year Awards for that one! He whimpered, so I got up from my desk, and helped him to the bathroom, as he hobbled along. I asked him if he had hurt his leg or if someone had hurt him at school, to which he told me no. He begged me to give him Advil, so I gave in.

Soon after he fell asleep again, only to wake up at 5pm, burning up. He had a fever of a 103. I found this odd, since I had given him medication just 2 hours prior, but at this point, concluded that he must have the flu, like everyone else and I was going to need to prepare myself for a long night ahead.

All he wanted to do is sleep, and complain that his leg hurt. I was still thinking that since I know when I have the flu, my body aches, this was the way a 4 year old was able to communicate the achiness.  He fell asleep again and woke up at 8pm, still very hot. I gave him Tylenol. By 9pm, the fever had not gone down at all, so I gave him a cool bath. All the while, he was telling me his leg hurt. At 10pm, I gave him another dose of Advil. At 1030pm, he was still very hot. I was on the phone with one of my best friends and was complaining to her how that I could not get his fever down. This had never happened before. Normally, at least I could get it from 103 to 100, or so, but this was not budging! She asked what his symptoms were. I said none, other than a fever…and oh ya…he won’t walk on his right side. She said “WHAT”? I repeated what I had just said and she very nervously said “You have to go to the ER NOW”. I tried to calm her down, letting her know she was totally overreacting at which point, she urged me to call my pediatrician if I didn’t believe her. So, I did, reluctantly, because it was now after 11pm, and I didn’t want to wake anyone up. I spoke with the doc, who confirmed what my friend said and told me I had to go. I know I sound like the worst mother in the world when I say this, but it was so cold, and I was in bed, and I was tired and I asked her about 3 times if she thought I could wait until morning. I clearly am not one to run to the ER for every little thing. After the 3rd time she told me now, I got up, put my Uggs on and headed out the door with Matthew to Providence Tarzana.

We arrived about 11:30pm. The waiting room was full with what looked like flu patients. I checked in, and took a seat as instructed. At 12am, we were called to triage. The intake nurse took all the info, and took us right back to what I thought was going to be a room, but instead a gurney in the hallway, where we would spend the next 4 hours.
It was right near the nurses’ station. The banter that went on in there, kept me entertained, while Matt slept, since they gave him morphine, for the pain. They drew blood, did an x-ray and ultrasound.
His white blood cell count was super high, as well as 2 other markers for infection. I found out that we were urged to go to the ER for fear he had what is known as a Septic Hip, however the lack of fluid found on the x-ray and u/s confirmed this probably was not it. Given that it was clear he was pretty ill, they said he had to be admitted; however the pediatric floor did not have a room at that time. At 4am, we got a private room in the ER where we would stay until 7am.
On the Pediatric floor, we were wheeled into a giant room, which according to the door, holds 3 patients. All I could think to myself is “this is going to be interesting”. As of that moment, there was no one else in there and they actually brought him a portable Wii to play with!
After we got settled, I noticed a small red mark on Matt’s upper thigh.
It had just appeared, however because his eczema is so bad on his lower legs, I sort of just figured it was moving. At 2pm they sedatated him for a 2 hour long MRI. By 5pm, the red mark was about the size of the inside of my palm. At 6pm, the results indicated that there was an absess in his upper thigh soft tissue.
They started him on Clindamyosin, all the while still giving Motrin and Tylenol to try to bring the fever down. At about 8pm, that evening, we got a roommate. A girl, about 14-15 years old. She didn’t speak English, but from what I gathered, it was something gynecological.

By 1am, he had 105. I was sound asleep in the bed next to him and the nurse woke me up in a panic. They covered him in ice packs. By this time the infection has spread to the size of my hand and was starting to really panic that it was Necrotizing Fasciitis, aka, the Flesh Eating Bacteria.
Many were urging me to have Matt transferred to Childrens Hospital, however Providence has just, I believe as of Jan. 1st, teamed up with CHLA and therefore a team of doctors from there came in including an infectious disease and surgeon to take on his case.
By Sunday morning, his fever was down to about 101 and the infection did not spread anymore fortunately. However, that afternoon, the infection started up again, so they switched from the Clindamyosin to Vancomycin, an even stronger drug to kill whatever was lurking.
Because we still did not have a clear diagnosis as to what Matt had, they put us in isolation – which also meant…we got our own room – so nice! It even had a fridge! Thank goodness for that, because every visitor that came brought me diet coke, my drug of choice and I had a place to keep it cold.

I settled in, organized all of the amazing gifts Matt had received and made ourselves comfortable.

The love and support we were receiving from the community was truly overwhelming. Meals were set up, the other 4 boys were being taken care of and well wishes were overflowing my inbox. I updated everyone as to what was going on thru Facebook and the vast amount of encouragement was awesome. A lot of juggling went on; however with help from everyone, Mike was able to keep the other boys schedules in order, while I pretty much lived at the hospital with Matt. He relieved me about 3 hours a day, so that I could go home, shower and do Jen’s List for the next day.

By Tuesday, the spreading had finally stopped and we were confident that the medication was finally working. On Wednesday, it was determined that enough of the infection has been destroyed by the meds and it was safe to go in and debride the area. Dr. Akemi Kawaguchi, who has been a friend of mine since I was 14, operated. I never, in my wildest dreams, would have thought that as high school friends, almost 30 years later, she would be operating on my son. I know I was in amazing hands!

The procedure was a success. She was able to remove almost most of the infection. What she couldn’t, would drain thru a packing left in the incision area. At the same time, they also put in a pic line as he was going to need to be on intravenous antibiotics for weeks and once he was well enough, they could send us home with that to keep recovering.

By Thursday, the nightmare of what we had gone thru was really starting to take its toll on me physically and mentally. I was beyond exhausted and extremely emotional. I know that Matt was on an upswing, but I felt like we had been thru so much, the whole experience was totally overwhelming. Not to mention I most likely gained 20 lbs. eating every cookie that someone brought and snacking 24/7 just to make the time go by!

Thursday night to Friday morning was rough. We both slept horribly and we were so ready to go home. The docs said they could not discharge us until they knew what the diagnosis was. Finally, at 2pm, one week later, we had an answer. Strep A positive. Basically, the same kind that is in your throat, but his landed in a lymph node in his upper thigh, got infected, abscessed and spread. Not a common occurrence. All along, everyone thought that it was MRSA. It is a very good thing that I took him to the ER when I did. Had it gotten into his blood stream, there would have been major problems.

We signed the discharge papers, packed up what I called my studio apartment and got home Friday afternoon where the home health nurse met us. She showed me how to administer the antibiotics thru his pic line, where I will continue to give him his medication until at least Feb. 2nd, three times a day.

Matthew is VERY brave. I am in awe of how amazingly he handled everything he went thru the past 7 days. He's on the road to recovery and for that, I'm very grateful. It was very frightening not knowing what was wrong. The nurses and hospital staff were terrific and really helped make my stay there tolerable.
A BIG shout out to the entire community. I am humbled by the graciousness and overwhelming response to our ordeal. The thoughts, prayers, good wishes received took us through this truly very scary time. There are not enough words to properly thank all those that reached out to help.
I will forever be indebted.

Now, as far as I am a concerned, I need a vacation!