The Last 21 Days

So most of my family and friends know why I havent been booking or shooting this month but I haven't shared on any of my business pages why I have disappeared. The truth is my son, Rylee, got very sick suddenly. On September 1st around 3 pm I got a call from the school nurse saying Rylee had a headache and that some of the kids had noticed he had popped a blood vessel in his eye. I asked if I needed to come get him but he said he was fine to ride the bus and that they just wanted to give me a heads up. So he got tylenol when he got home and he just wanted to sleep and I let him. The next morning he started with a fever and saying his stomach hurt. I asked if he wanted to go to the hospital and he said no he just wanted to sleep. So I started rotating tylenol and motrin thinking maybe he had caught the flu or a stomach bug but he was still complaining about a headache....which I thought was strange because the tylenol should've been helping. As the day progressed he became more light sensitive and he hadnt eaten since he got home from school the night before but he still didn't wanna go to the hospital. The Motrin was working for his fever so I let him sleep. I figured his stomach hurt because he hadnt eaten but he woke up the next day, on the 3rd, and threw up as soon as he had his medicine so I took him to War Memorial Hospital. Im going to be 100% honest about our experience with WMH. The ER team was less than concerned and tried to brush it off as a bug too. They gave him tylenol and zofran to help with the nausea....that Rylee never said he had. He said he had sharp pains in his lower abdomen. When we got to the ER his fever was 101.8. After the Tylenol it went up to 102.4 in the next 30 minutes. The doc ordered a quick throat swab and he tested positive for strep and they mentioned they had 2 other people on their way and that they needed to get us out quickly...Meanwhile his fever was going up. They sent us home with a prescription of penicillin. This was him right before we left....the first time.

  (All of the photos in this blog are cellphone shots. I didn't bring my DSLR)

I gave him his medicine and let him lay down. He slept that night but had a fever and headache that never stopped. He woke up the next day and after getting his penicillin and tylenol he fell back asleep beside my mom on the couch. Next thing I know I hear horrible screaming coming from the living room and I come running as fast I can and I see Rylee in a full seizure, arms tightened and curled near his face, spit with blood is coming out of his mouth and I picked him up and for some reason I thought I could get him to the hospital faster than an ambulance could. I told mom call 911 as I headed towards the back door and she said "I cant call 911 if you leave with him." So I sat on the floor and I held him, I told him I was here and it would be ok and I waited for what seemed like an eternity for the ambulance to get there but it was only around 8 minutes. Luckily his seizure only lasted for about a minute but I'll never forget feeling him go from so tense and shaking to just completely limp and sweaty. The EMTs put him on a stretcher and we both got in the back for what would be our very first ambulance ride ever.

We got to WMH fairly fast but on the way they tried to do an IV of fluids and he ripped it out. He wasn't understanding what we were saying and he couldn't talk which made him aggressive when he wasn't incoherent. We were rushed into a room where nurses surrounded him and put a bunch of wires on him. They wanted to hook up an IV and he was fighting them. He was making sputtering sounds and his eyes were rolling around. He was pushing at their hands and I could see he was scared and clearly not understanding anything anyone was saying let alone what was going on around him. It frustrated the nurse's that my son's brain was a bit scrambled and they all left the room....while he was alligator rolling in bed, sputtering, peeing on himself, etc....They all left. One called the life flight helicopter and the rest checked their phones. I looked out to see where they went and saw 2 scrolling on their cellphones. Meanwhile myself and his nana have been trying to restrain him to stop him from throwing himself out of the bed or ripping his IV out. One nurse even commented and said that 'she wasnt going to fight him to help him" I'll say one thing....she is lucky I had walked out to update the rest of the family in the waiting room that we were going to be life flighted to Ruby Memorial Morgantown....or I would've gone off on her. WMH is honestly the worst hospital I have experienced. The nurses and doctors lacked empathy, even for a child that's only 8, who was clearly very, very sick. This is just before they left him in the room... bed rail down, wrapped in wires with no medical supervision. It's the only picture I took in the ER because it was the one and only calm moment.

I had to make the very hard decision to drive up rather than fly. His dad flew up with him and I ran home packed us both a bag, grabbed his tablet and drove 90 the whole way to Morgantown. That was the longest drive of my life. I spent the whole ride crying my eyes out, fighting off panic attacks so I wouldn't have to pull over, and just begging that my baby would be ok. I have never been so terrified in my whole life. I hated having to leave him for even a minute when he needed me most but I knew I wouldn't be leaving the hospital until he was coming home with me and we had to have clothes and the car. I got to the hospital and he was in the PICU currently getting his spinal tap and he was under heavy sedation. It was about an hour later that I finally got to see my baby and he was hooked up to a ventilator, asleep and restrained to the bed. He had an IV in his arm and in his foot. 

This was the most peaceful I had seen him in awhile but I still wasn't prepared for seeing a machine breathe for my baby. You could hear that machine running day and night. On one handed that sound reassured me that no matter how much the fetanyl depressed his breathing that he would be ok but on the other hand he was unable to breathe on his own. They decided while he was so comfortable to then stick 22 EEG wires on his head to monitor is brain for any seizure activity. They also kept him on Kepra, an anti-seizure medicine.

 Rylee had the most incredible team of nurses with him around the clock at Ruby Memorial. Janelle was his night nurse the first 3 nights we were there. She always made sure he was comfortable and clean. She would work around me as I slept by his bedside, my head on the rail, his cold hand in mine. She spent her whole 12 hour shift dedicated to only him, her computer and chair set up directly outside his door where she could see him at all times and I found that to be really comforting. Below they are holding his hands because he was reaching for the breathing tube. It was tricky at first to find the perfect balance of sedation for him. It was either too much or not enough. 1 of Precedex and 1 of Fetanyl seemed to work good the first day and a half and stopped them from having to bolus him with more Fetanyl. Weaning him down correctly took another day and a half and at first he didn't pass his CPAP. A CPAP is a breathing test they do where the ventilator doesn't initiate the breathe. It waits for the patient to do it. There is a red bar that flashes on the ventilator that says No Patient Effort and makes this heartbreaking beep. This meant the breathing tube stayed in until he was able to initiate his own breathes for several hours. I cried myself to sleep every night until that damn tube came out.

During the sedation period they ran tons of labs, he had MRI's, a spinal tap, etc. The MRI did show an infection in his brain and his spinal tap also showed signs of infection. However because of the Rocephin that WMH had administered it inhibited the bacteria growth during the lab culture... because of that the bacterial meningitis tests were inconclusive. The viral meningitis test were negative but all signs pointed to bacterial meningits and he he was on multiple very strong antibiotics at first and then it was weaned down to just Rocephin and Kepra after the breathing tube came out. 

He got his wires off first and then after passing his CPAP they finally removed his breathing tube!!

It was amazing to see his face without any tubes or wires! I kissed his cheeks at least a dozen times!

After he was breathing on his own for several hours and successfully met all of the PICU docs demands we were moved out of PICU and into a children's room on the same floor. As soon as he was there he held onto the stuffed lion his Aunt Rachel had gotten him and he fell asleep.

He had to continue IV antibiotics and was having vital checks and such about every 2 hours throughout the first night in room 674. I remember the nurse came in at 6 am wanting me to make him stand on a scale. I had that pushed to 10 am for the rest of our stay so he could rest as much as possible. The second night on this floor he got a little hungry and actually drank a bit of a vanilla milkshake. He also wanted to go to the activity center where he mostly laid with his head on a pillow because the walk was exhausting but they did loan him a DS to play in his room. The next morning he ate breakfast and wanted to go to the activity center where we made crafts and he actually played air hockey for about 30 minutes! He was pretty tired then and we headed back to the room where he ate a little dinner too and slept some more. Here he is eating his favorite... blueberry pancakes...his first meal since he left school Friday!

As the days went on he even played a little basketball and won an award as air hockey champ because he beat all 4 staff members, me and a little girl on the table so they made an award just for him!

After coming back to the room a group of Girl Scouts came around and they wanted to give Rylee a blanket they had made. At first he tried to say no and then he saw the camo one and he covered up with it and went right to sleep!

As he continued to progress and eat they decided the next step was getting Rylee's PICC line placed so that we could get ready to finally go home. He had the sweetest lady from the PICC team perform the procedure and she let me stay in the room. They draped and taped him and gave him some Adavan to help keep him calm and sleepy because he was pretty tired of getting stuck with needles at this point and wanted nothing more than to be left alone.....and I can't say I blame him one bit. His hands and even his foot looked like a pin cushion. He held my hand and was really brave throughout the procedure. He did ask for a mask to wear like we had on and, of course, he got one. The nurse placed his line extremely fast and did a beautiful job on the first go!

On day 7 they said the final labs had come back negative and that Rylee was improving faster than they had even hoped. We spent alot of that day in the activity center playing together and talking about all of the exciting things that we were gonna do when we finally got out. On day 8 when the docs made their morning rounds we were informed that today was the day. All the steps were in motion for us to leave but first we had to get a weeks worth of meds to take home. I got a lesson from a nurse on how to first do his saline flush, then his eclipse of Rocephin (antibiotic), saline flush again and finally finish with a Heparin flush. I had to continue this treatment twice a day, once at 8 am and again at 8 pm.

Everything he needed was delivered and we were discharged by 6 pm after 8 days at the hospital! I guess all of the excitement wore him out because he slept the entire ride home.

We were discharged on a Tuesday and the following morning a home health nurse came by to supervise his infusion and make sure I was doing it correctly. I was more than happy to hear that I was. 6 days after being discharged we had to make the 2 hour trip back to Morgantown for his follow-up with the infectious disease doctor. While there he was really tired and had some strange pain in his left eye so she ended up scheduling him an Ophthalmologist appointment before scheduling an MRI or admitting us. They dilated his pupils and made him look like Puss In Boots from the movie Shrek. After checking him over they said they think it's just from him being really sleepy, his optic nerves look good and the numbing drops helped so that usually means its something superficial. Thankfully they decided not to schedule an MRI. I also found out he is slightly nearsighted but it isn't causing him any issues so no glasses prescription was issued.

The poor guy was so tired he fell asleep everywhere he sat down at the hospital!

After his eye exam we went up to peds infusion room where a nurse took his blood for his final labs and then removed his PICC line! For the first time in just over 2 weeks my baby was completely wire free! We celebrated with smoothies and then he slept the whole ride home again. 

Life around our house is slowly getting back to normal. He has started back in school and he was placed in an Advanced Math class! He is able to play football with his cousins again, which makes him really happy. He has even been getting along with his littler sister better......my guess is he missed her...even if he wont admit it!

I will forever be grateful to the HUGE team that worked tirelessly together to make sure that my baby boy got to go home and be with his family. From lab techs to vital checks I could not have asked for better care for him than we got at Ruby Memorial Hospital. 

We will be going back again in October for Rylee to visit his neurologist and hopefully we will get more good news and continue to move forward.

To everyone who kept him in your thoughts and prayers, wrote cards, sent gifts, visited, etc it truly means the world to me. I couldn't possibly thank each of you enough for your love and support.

To my clients I appreciate your patience and understanding throughout this very difficult time. I still feel extremely guilty about not being able to book with anyone this entire month as I know that fall is the favorite time for family portraits. I will be opening 2 dates for complimentary mini-sessions in October as a small token of my appreciation. I will share more details about that this week as I continue to get settled back into my old routine.