The Harrison Family: January 2018 - Hospital visit for Riley and Kindergarten for Carter

January 2018 is a month I almost would prefer to forget. It was one of the hardest months I have had as a mom to date! As mentioned last month Riley had a surgery on her right ear to remove a cyst in her right ear called a clystoma. The surgery went well and Riley was released that day and sent home with instructions to rest up and heal. Justin and I were very religious about keeping up with everything post surgery. She came home on an antibiotic and a variety of other medicines that we documented and administered as prescribed and we followed the wound care instructions exactly. I would take her temperature daily as I was paranoid about a post operative infection. Every day post surgery her temp was between 99 and 99.8 but never went back to 98.6. They had mentioned to us that during surgery they filled her ear with a gel foam substance to keep everything in place and we should expect to see some drainage over time as the gel will end up coming out of the ear over a few months. Well her ear was draining a lot and it did not look like gel to me. It was yellow and thick and was coming out of the inside of the ear and the outside where the incision site was.

This is what her incision site looked like right after surgery

This is what her incision site looked like after the drainage - the fluid formed a space in the incision to find a way out

I called the Dr and of course my surgeon was off or on vacation so I would get the nurse who kept telling me, this is all normal - her fever is due to inflammation don't worry its fine but nothing was improving - to be honest it was almost getting worse. Finally the day after New Years day (5 days post surgery) I called and demanded to see a doctor. We saw Dr Liu that looked at Riley's ear and confirmed my suspicion - that she in fact did have an infection. She took a culture of the infection and prescribed us yet another oral antibiotic and told us she wanted to see us back in two days. At this point Riley is on 2 different oral antibiotics and one antibiotic ear drop. Riley returns to school and is super self conscious of the drainage and the way she looks. She is still draining from both the inside of her ear and the outside incision site so I have to bandage her all up for school which she was so embarrassed about!

Cotton in the ear & Bandages in the back

We go back to see the doctor two days later (Thursday, January 4) and Dr Liu thinks Riley's ear looks better and is pleased with the progress. Her temperature at this point has not returned to 98.6 despite now being on 2 oral antibiotics for 3 days. I picked Riley up from school on Friday, January 5 and her ear looked almost worse and of course it was after hours so I called the Dr office and had a physician paged. Of course I get yet a 3rd doctor - not her surgeon and not the one we saw twice this week but another doctor. He like everyone else I have spoken with talks to me like I am crazy and tells me all this is normal stop worrying. After I continued to press him he stated he would check her cultures and call me back if he saw anything that needed to be changed. Sure enough he called me back and said that her cultures came back and her infection is resistant to BOTH oral antibiotics that she is taking. He tells us to throw the two we are on away and he prescribes another one. The weekend continues and Riley is taking her medicine as prescribed but still her temperature has not yet returned to normal. Monday morning I knew my original surgeon was coming back so I called his office first thing to see what can be done. Of course I cannot talk to him and the nurse returns my call and tells me that the Dr thinks that the dosage of the meds she is taking needs to be increased by 4Ml and that will fix my problem. When Riley returned home from school this Monday night she was actually showing fever signs and her fever was over 100. I called my boss and told them I was not returning to work and I was determined to find a Doctor to see my daughter even if I had to drive all over town. Tuesday (January 9, 2018) I called Texas Children's and demanded to see a physician that knew something about ears. This is when Riley and I met Dr Sonal Saraiya - Pictured Below - the hero of this story

Dr Saraya took one look at Riley and without even looking inside her ear or behind her ear at the incision site - she said pack your bags - I am admitting you to the hospital. She could tell by looking at her ear how swollen it was and she was determined to take care of it. Within a few hours she had an infectious disease doctor on standby in the Woodlands for us and a bed ready for Riley. We walked into Texas Children's and it was as easy as checking into a hotel. We were greeted by the most amazing staff of nurses and doctors and I was finally feeling like things were moving the right direction.

It was determined that Riley had contracted a post operative MRSA infection.

Methicillin-resistant Staphylococcus aureus (MRSA) (/ɛmɑːrɛseɪ/ or /ˈmɜːrsə/) is a gram-positive bacterium that is genetically different from other strains of Staphylococcus aureus. MRSA is responsible for several difficult-to-treat infections in humans

They started an IV and were giving Riley an antibiotic called Vancomycin. As you can imagine Riley hated the IV and was completely stir crazy in the hospital. Luckily Dr Saraya teamed up with Dr Dutta a very experienced infectious disease Dr and they took amazing care of us. They visited Riley daily and kept us up to date on thoughts and concerns. The fever even with the Vancomycin did not subside and on Friday, January 12 they decided to operate on Riley again for 4 hours to remove all the dead tissue in the hopes that the medicine can reach the infection site and kill it. This surgery was so long and Mom, Dad, me and Justin were pacing around the waiting room like a bunch of crazy people. The Dr mentioned she did have to remove a lot of nacrotic tissue and she inserted a drain in the back of Riley ear to allow all the puss to drain out. While they had Riley under anesthesia they inserted a PIC line and removed the IV line. This was a line direct to her heart where we could give her the IV antibiotics. We were in the hospital for 2 more days and on Sunday, January 13 we were able to leave the hospital and head home. We were sent home with a weeks worth of IV antibiotics but we were all just so glad to be under one roof again!

My girl getting her CAT scan - to confirm another surgery was needed.

Friends kept us company - and brought Riley some entertainment

Post surgery #2 - they gave her a mickey headband!

Morning snuggles with my sweet girl

woke up with a rash on her face - not sure if it was red mans syndrome or something else but sure was scary

Can you tell by the look how upset she is with me for making her stay?

Riley came home on the IV - this is her taking an infusion - the medicine balls are portable so she can keep on moving

The day finally came - we got to go home!

After 2 weeks we finally could wash her hair! Without getting her ear wet!

Granny's birthday! Riley was still in the hospital but the others celebrated!

Texas Children's sent Riley home with a Dr kit - so all the kids enjoyed playing Dr and Paw Paw was a great patient!

Dr Maggie Renton

While all this was going on with Riley - Things with Carter of course were not without concern. While I was kissing Riley goodbye for the second surgery (Literally - and she was screaming crying) I get a call from the St Martha Catholic School Principal. She called to tell me that they have finally realized that they cannot meet Carters academic needs in Pre-K 4 and they think it would be best to try him in Kindergarten. My head was spinning a mile a minute and I think I was only hearing half of what this lady was telling me. I was impressed that she was honest and admitted that in Pre K the teacher is just not able to differentiate the learning and keep him intellectually challenged. At this point with Carter - I would try anything but I was concerned about Carters maturity. I know he is smart and can do the work of kinder no problem but his maturity is not where it needs to be for that grade level. I told her I would be willing to give it a try and we can see how it goes. So Carter began Kindergarten mid year in Ms Sanders class.