Cleveland Clinic: Day 2

Philippe got a PET scan (a unique type of imaging test that helps doctors see how the organs and tissues inside your body are actually functioning). He was hungry and grumpy because he couldn't eat or drink since dinner last night. They gave him some radioactive medicine to help highlight the images of his brain better for the scan. Then they gave him an intensified sugar solution in his IV so they can see if parts of his brain aren't metabolizing sugar properly, which might explain the seizures. While the sugar was kicking in they did a 20-minute EEG to watch his brain waves. Then it was time for the sedative. The sedative  they use has a small component made from eggs, but Philippe is allergic to eggs and since it goes straight into the blood stream through his iv I was worried. The anesthesiologist gave him Benadryl first then gave him the tiniest dose to get him to fall asleep. He fell asleep really fast. I took Belle upstairs to wait in our room while Philippe went into the machine to do the PET scan. 

PET Scan Machine

Crystle had finally arrived!!! After 2 days of sleeping in airports and all the traveling she was exhausted so she was sleeping, but it felt SO good to not be alone in our hospital room anymore!

I put sleeping Belle in her crib and went to the recovery room to meet Philippe there. I didn't have to, but I missed my cute little boy and wanted to make sure he was ok. The anesthesiologist said she'd given him another dose of Benadryl after the scan, but his lips and ears were puffy. 

As soon as I sat down I saw Philippe start to have a seizure! It was more mild than usual, probably because of the allergic reaction and the sedative suppressing him, and no one else even noticed until I said, "he's having a seizure. Why isn't his EEG box hooked up?!" The nurse even said "are you sure? He's having a seizure?" Then he felt the tensing and stiffening, but he told me that even though Philippe still had the electrodes on his head, on that floor in the hospital they didn't have the machine to plug him into that monitors and records the seizure. 

By the time the tech got all the approvals from the anesthesiologist, the nurses on our floor, and the doctors, 20 minutes had passed and the seizure was over. My sweet, brave little boy had had an allergic reaction, and a seizure, and there wasn't much they could do about either! I was frustrated, but was trying to be patient because I know protocols are in place to keep patients safe... But he'd had 2 seizures in 2 days. He usually only has 2 or 3 in a week, so now we'd have to hope, pray, and wait to see if by Friday he has yet another seizure so they can actually record it.

Cleveland Clinc: Day 1

Monday, 8/13/12:

We got all checked into admissions in the hospital, I got a security badge (anyone going to the Pediatrics section in the hospital has to get a new visitor pass every day, for the kids' safety), then we went up to Philippe's room.

To start everything off we had to hook up the electrodes on Philippe's head for the 5-day EEG. There are 24 leads to put on, one at a time.


First, Kate (the tech that hooked him up) had to measure with a ruler and make marks with a red, soft colored pencil. That's the easy part, and it took about 20 minutes because Philippe was fighting and freaking out. He hates people touching his head and he hates holding still. After she made all the marks, one at a time she had to put each of the 24 electrodes in the right spot on his head. First there's a gritty gel-like soap they scrub on with a swab.

She places the electrode, then takes a small square of gauze dipped in strong cement-like glue (which smells so strong it burns my eyes and nose!) she puts the gluey gauze on the electrode and dries it in place using an air gun, which is loud, cold, and scary to Philippe so he bites, kicks, and screams even more.

Then, using a giant, scary (not sharp) syringe she fills the small interior of each electrode with a special conductor lotion to get a better reading.

I had to lay across his body pinning his chest and arms, and hold his head still with my hands. He's STRONG so it was tough!! Finally they wrapped his head and all the wires with gauze and tape so he doesn't pull or scratch them off..

They monitor his heart, oxygen, and other stuff so they put 3 stickers on his back and 2 on his tummy. He has so many wires all over he keeps getting tangled in. Once he finally calmed down, they had to put an IV line in his hand.

Most of all they monitor him through EEG and video 24-hours a day for 5 days, and hopefully they'll record a seizure. (Too bad he wasn't hooked up before his seizure on the plane!)

I was alone with my 2 kids for all of this! After everything the past 3 days, it wasn't until Philippe was completely hooked up and we were all alone in his hospital room that I held him as tightly as I could and cried. I told him I'm sorry and tried to explain everything, even though I know he can't possibly understand. Philippe cried. Belle cried. I cried. We NEEDED that moment, I needed that moment to let my emotions flow completely unrestrained, which I rarely do otherwise I'd be crying 75% of the time.

Today was rough, but it's just part of our journey to a happier HEALTHIER Philippe :)

Part 3: Seizure

This questions has come up a billion times. "What if Philippe has a seizure on the plane?!" Now I know the answer is this: I hand Belle off to the couple across the aisle, I unbuckle Philippe (because his head juts forward and down onto his chest so he can't breathe unless he's lying flat on his back). I hold him lying flat above the arm rest in my arms. Meanwhile a flight attendant rushes over and asks what she can do to help. I tell her "nothing, I just can't buckle him in. It lasts 20 minutes so we just wait it out". She rushes off then runs back to tell me to take him to the back row of the plane because the arm rest goes up so I can lay him across the seats instead of holding his stiff, shaking body for 20 minutes. By the way, the woman in the last row that moved across the aisle so I could use that row just happens to be a nurse and she said she'll help with whatever I need. So I just chat with the nurse while Philippe continues to seize, until it's over. 

After the seizure finished I took Philippe back to our seats and buckled him in because we were starting the landing. The other flight attendant came over and gave me 2 pillows and a blanket to prop up Philippe's head since he always passes out after a seizure and sleeps for 3-4 hours. Belle was still fast asleep and the lady was loving holder her, since she has 2 sons at home, but not any girls of her own. 

When we landed, as usual I waited until everyone was off the plane. Before I stood up to get off the plane the flight attendants, some airport attendants, and even the 2 pilots grabbed by bags, my kids, Philippe's blanket, the stroller, and Belle's carseat, and walked me to the gate inside the airport. Before I knew it I was left with nothing to carry. I walked along side the entourage feeling silly because I was empty-handed while everyone else did everything for me, which never happens. 

We'd finally made it to Cleveland! The search for medical answers was now under-way.

- Candice

Candice with sleeping Belle & Philippe
at the entrance of the Cleveland Clinic.

Part 2: Charlotte Airport

We got to Charlotte around 7am. I waited until everyone was off the plane to strap on my back pack, sling on my diaper bag, and hold 1 kid in each arm to exit the plane. 

One of the flight attendants told me they couldn't leave until I did. They all stood and watched as I set Belle in her carseat, and with sleeping Philippe in one arm I put my bags down, opened the stroller, buckled Philippe in, and hooked the carseat into the stroller.

When I finished situating my kids and grabbed my bags again, I started pushing my stroller into the airport. One obviously annoyed flight attendant said really loudly to his buddy "We can FINALLY go get some sleep". I wanted to punch the guy in the throat, but instead I smiled and said "Sorry for holding you guys up. Thanks so much for being so patient."

I grabbed Burger King for breakfast since I didn't see many options. When I went to sit at our gate a lady saw me and asked if I was traveling by myself. I said yes. She said "oh my goodness! Honey, when we board the plane I'll help you. Don't worry." About 30 minutes later an older couple came and sat by us at the gate. She was cooing at Belle and talking to Philippe. She asked who else was flying with me to help me with my babies. I told her no one since my sister didn't have a seat on the flight. She said "Ok, when we board just tell me what to do! I can carry your bags, one of your kids, you just tell me. I'll help you."

When boarding time came, I didn't expect any help, but before I even stood up both ladies grabbed a bag and said "which seat are you in?". I was in row 5 so they set down my bags, helped me get my kids settled, and went to their seats. The man behind me offered to put one of my bags in the over-head bin for me, but they fit under the seat. The couple across the aisle said they'd help with my kids during the flight if I needed it. Everyone was so nice and offering to help with everything. This is why I love the South! Not only because I can say y'all and people don't look at me strange, but because "southern hospitality" is priceless. I was relieved and grateful because I truly DID need help, but it's always so hard for me to ask for it. Relieved and relaxed, my kids and I took a nap as the plane took off for Cleveland.

- Candice

Our journey to Cleveland (Part 1: Salt Lake Airport)

August 13, 2012

A day I'll always remember. It started at midnight. I was on standby and wasn't sure if I'd get a seat on the plane. They had exactly 2 empty seats: 1 for Philippe and 1 for me with Belle on my lap. The problem was my sister, Crystle, was coming with us to help me... but they didn't have a seat for her. So I boarded the plane alone with 2 kids: my 3-year old Philippe, and my 4-month old newborn, Belle. I was feeling overwhelmed, terrified, and completely inadequate. The 2 empty seats were in row 5 and 21. I went to row 21 thinking maybe 1 person would want to trade seats and move up to the front of the plane, which would give me a seat next to my son. I made my way to the back of the plane holding 2 kids, a big diaper bag and a heavy backpack. The entire plane was full; everyone watched my struggle, some sympathetic, some in awe at me carrying so much, some just plain annoyed that I was holding up the flight, but none offered to help. 

 When I got to row 21 there were 2 middle-aged, rather large individuals. The man seemed completely willing to move to row 5, but the grumpy woman snapped "No! We're traveling together! We're not splitting up" so I made my way back to row 5 only to see a man and his small son sitting next to the empty seat. I was obviously not going to ask that they split up. Exhausted, embarrassed, and wanting to bawl, I set Philippe down. He saw a million lights and buttons in the open cockpit so he dashed in and interrupted the pilots' conversation. They both turned, stunned at the intruder, and smiled at my son. While I was getting Philippe out of the cockpit the flight attendants had  jumped in and asked 2 people across the aisle in row 5 if they'd mind switching seats, and they had both agreed, giving me 2 adjacent seats.

I tried to get my bags and kids situated, but didn't have enough hands. I finally asked for help. A girl across the aisle held my baby for a moment and I buckled Philippe, stowed the bags, then snuggled Belle in my arms. We were off...

- Candice

Heading to Cleveland

So this Saturday it's the big day! I'm dropping off Candice, Philippe, Belle, and Crystle at the SLC airport so that they can head to the Cleveland Clinic. They'll be there for approximately 2 weeks if I'm right, and hopefully I'll be able to fly out there for the last two days and help Candice fly back.

I'm definitely nervous, I don't know what to expect and I'm not very fond of being away from my wife and kids for that long. I can't stop thinking about what it will be like while they're there and what the doctors will say. I love my Philippe, and hope that we can find some answers for him. He is my little bud. Whenever I come home from work the nights I don't work at the restaurant he gets so happy to see me. He gives me the biggest smile, claps and walks as fast as he can, reaching with his arms straight up so i will lift him up and give him a hug.

The other day I was looking at some pictures of him when he was barely 3 months old, before any of this seizure-nightmare had happened and I got a little teary eyed. The going through all the other memories I thought about how I use to wonder if he was ever going to use his arms again, if he would learn how to crawl, and walk, and play. I'm amazed at how strong he is and how far he has gone. He is a fighter! I can't wait for the time when I can have a conversation with him. I love you son!!!

Thank you!

I want to say thank you to everybody that has helped us so far! We have received all sorts of help, whether you helped us baking, setting up, donated, or had some words of encouragement for our family. We cannot stop saying THANK YOU! We are so grateful for all the concern and love that has been shown to us in these days.