Friday, March 27, 2015

In Pictures and Videos

First he was like this:

Then he got all vomit-y and lethargic and required an ambulance ride to the ER.

When the EMT took this nose mask off, Evan asked for it to be put back on. They let us keep it as a souvenir since he seemed to like it so much.
Evan's PICU room, post-surgery
Sunrise view from the PICU. We were basically on the bay, facing Oakland and a giant cruise ship.

Cheesy smiles and funny faces were the first indication that Evan was alive post-surgery, so we made him ham it up over and over again, just to be sure. He's also obsessed with "take a picture" and "make video" and "watch video" and "let me see."

Once he was off his breathing tube he wanted to be held. Once we held him he wanted to go right back to his bed.  

I love this next video. It was all he could do to open his eyes (one opened more than the other for a few days). I shouldn't have been surprised. This is the same kid who didn't open his eyes for 3 days after he was born. Child Life services brought some toys and we tried so hard to keep him entertained with his limited energy.

Evan spent much of his free time in the hospital learning how to play the ABC song on his new piano iPad app.

First attempt at escape
I love the very beginning of this video where someone in the background asks, "Do you know where the ostomy supplies are?"

"But I don't WANNA go back inside!"
The hospital food menu is drastically improved from back in my day. Evan had access to all his favorite foods and anything he wanted to eat, even if it only stayed down for an hour or two.

Disconnected and feeling good. Precautionary throw up towel.
Evan was discharged Thursday after holding in two meals (finally!) He threw up in the car on the way home. For the first several days at home we kept sheets and blankets covering any surface Evan was on. They proved useful, as he threw up twice more within the first 24 hours. Since then he's finally held everything in, apparently substituting his throw up for some crazy hiccups that he now gets at least 3 times every day. I never thought I'd outgrow the disgust for throw up, but I guess cleaning it up 20+ times in one week helped. It's second nature now.

Recovery has been ongoing. He is doing great with his speech and his mind seems quick, but his body is still weak in some ways. He has taken some independent steps, but isn't nearly to the level he was pre-surgery. He also has a hard time with stairs as well as endurance with his walker or push car. It's super frustrating to go backwards with his progress, but I'm confident he'll continue to improve over the next few weeks.

We went to visit the fire station about two weeks after our 911 extravaganza. The guys who helped Evan were not there, but the other firefighters showed us the fire engines and ambulance up close and gave Evan a firefighter hat and sticker. He was a bit scared of the engines up close, but afterwards he loved playing on the play fire engine at the playground next door to the fire station.

Yesterday I gave Evan a bath--his first in 2+ weeks. When his shunt was placed they made an incision in his tummy to help guide the tubing into his abdomen. He had to wait for the tummy incision to heal before he could soak in water. I'll spare you the details of the various fluids and substances that have been on Evan's body and hair in the past two weeks. Suffice it to say the bath was a good step on our road to recovery.

Thursday, March 19, 2015

Part 3

When Evan had his first shunt surgery at 3 months old, his surgery was sometime in the middle of the day. He woke up a few hours later, started drinking bottles again at night, and went home the next day. That was typical.

After Evan had his shunt revision on Saturday, he didn't wake up. That was not typical. And anytime you do something atypical on the doctor's watch, there's drama.

The report from the OR was that surgery went well. They replaced the entire shunt because neither the valve to pick up fluid in the brain or the tubing that drains the fluid into his abdomen were working. Evan returned to the room with a bandage on his head and a breathing tube in place. He looked so peaceful and pain free, especially compared to the unstable state we had last seen. Now we would wait for the anesthesia to wear off. Isaiah asked the nurse if there's a point where we should try to wake him up. She said, "No. He'll wake up in his own time. There's no reason why he wouldn't, right?" We were so excited to see our boy get back to his normal self.

I should've tallied how many people came into our room during the next several hours to check in and, on finding him still asleep, told us that everyone metabolizes the medicine at a different rate and his body must take a little longer, and blah blah blah. Finally, later that night, a doctor came in and asked us if we were concerned that he wasn't waking up yet. We said yes. She said she was concerned as well. There were two plans. First, do a CT scan to check that the new shunt is working. Second, do an EEG to check that his brain is working and isn't having any silent seizures. I think Isaiah and I would both agree that the next few hours were the worst moments of this whole experience. We had a large range of thoughts and emotions that can't be fully explained.

Why isn't he waking up? Did something go wrong during surgery? I trusted Dr. Gupta. Is my child brain-dead? Will he ever wake up? We talked to each other about stories of people who were in comas or a vegetative state for years and remembered things from that time. Could I handle taking care of Evan if that happened to him? We started reminiscing about all the funny/sweet/cute things that Evan "used to do," not knowing if he'd ever be able to do them again. I got extra emotional when Isaiah hugged me and asked, "It's a good thing we're sealed together forever, right?" In his mind Evan was already gone.

The CT scan came back clear. The shunt was working great. His ventricles were down to the normal range. The EEG would be our moment of truth. Someone came and glued all the wires to his head and wrapped it up with this terrible looking gauze beanie. I tried to sleep but couldn't. I didn't want to think about the news I could very soon potentially be given and I wanted to think he'd just suddenly wake up, but for the first time since learning Evan's diagnosis nearly 3 years ago, I was scared for his life.

The EEG showed normal brain activity. He's alive! I've forgotten the details of that night, but eventually little man started twitching fingers and moving his head. Several times we rushed to his bedside to try to get him to respond to something. Evan! Are you awake? Evan, it's Mama. Wake up, honey! Can you open your eyes? (No response) Can you do your cheesy smile? It was subtle, but his eyes squinted like he does when he smiles real big. Isaiah and I saw it and knew right away that he was there. Then there were a few times the nurse did "oral care"--a little sponge brush in his mouth--and he started smacking his lips. That was another reassuring sign. He also responded well to the iPad and was quick to find his favorite games even though he could barely move his arms and his eyes were mostly closed. Apparently I have the slowest waking-up-from-anesthesia child in the world, but I was so relieved that he was waking up at all.

It took over 24 hours after coming back from surgery for Evan to be awake enough for the doctors to feel comfortable enough to take out his breathing tube. On Sunday afternoon it was removed. Once it was out and he could talk, he quickly said, "Want drink. Milk." and "Sit lap." He had to wait a few hours to eat and drink, but we did get to hold him. His head was super floppy and right after I picked him up he wanted to lie down. Since he had gone from such high pressure in his brain to such low pressure, it was going to take a while to adjust. Typical symptoms of pressure change are nausea and light-headedness. From this point we knew that to be discharged he needed to 1) Eat/drink regularly, 2) Get off oxygen, 3) Poop.

On Monday Evan was happy to eat a regular diet and he was weaned off his supplemental oxygen. He also easily passed the poop test. There was a little set-back during dinner when he stuffed a little bit too much pizza in his mouth which made him gag and throw up. We were reminded to take it easy with the foods. Then we were told he needed to be back to most of his normal strength and activity level before we could leave. That was discouraging, seeing how he couldn't even hold up his head. I couldn't imagine him sitting up, let alone walking. But Tuesday he surprised me by sitting up a bit. We were feeling excited and took him on a ride in a little radio flyer car in the hallway. When we tried to put him back in his bed he threw a fit which made him throw up again. Later that day he was coughing and he threw up again. We took it really easy Tuesday afternoon and he finally held in lunch and dinner. We went to the playroom Tuesday night and played with the therapy dog. He seemed to love it. Wednesday morning we were told that if he kept his food down we could talk about going home in the evening. He sat up for a little while during OT and when he went back to his bed he threw up again. No Wednesday discharge. This morning he's already thrown up his before-breakfast snack so, again, we're not off to a great start. But once we can manage this issue we'll be ready to bust this joint. Since his sensitivity is probably related to his body adjusting from surgery it will probably just take time. Specific prayers for no throw up would be greatly appreciated. We've been feeling so loved and watched over already and know we'll be blessed with the things we need in the Lord's time. I anticipate our next update will be news of going home!

Tuesday, March 17, 2015

What Happened Part 2

I've never ridden in an ambulance before. There were no sirens or lights since Evan's vitals were stable. He was in a recovery state of consciousness after the seizure, still pretty dazed and not responding very well for about 10 minutes. The EMTs gave him an anteater stuffed animal and he eventually said a few words. I was questioned about his entire health history during the drive. On the way I also texted Isaiah to let him know where we were so he could meet us after work in an hour or two. We went to the South Sacramento Kaiser ER. It was a pretty calm admittance. The EMTs transferred Evan over to the Kaiser nurses along with the information they had collected, and then they said goodbye (and told us to come visit them once he's all better).

At Kaiser I retold the story of what happened several times.
Evan's was set up with monitors for his vitals and an IV for blood work and fluids.
Evan's health history was recounted as I answered the same questions repeatedly.
He had a head and abdomen x-ray as well as a CT scan to check the positioning/functioning of the shunt.
Isaiah came!
Evan had another seizure.
The Kaiser doctor called Evan's UCSF doctors for consultation. (To be frank, she didn't know much about shunts and shunt failure.)

It was pretty obvious that we needed to be transferred to a different hospital that could give Evan better care for his condition, so medical transport was arranged for us to go to UCSF. Isaiah drove home with a list of items to collect for an unknown length of stay in San Francisco. Evan and I took off on our second ambulance ride of the day. This time I got front seat! I got all the inside scoop on ambulance driving during the hour and a half ride.

We are now at the new UCSF Children's Hospital in Mission Bay. (Same doctors as when I was at UCSF, but new location and lots of new equipment and it's HUGE) Everything smells new....except for the soap which has a VERY nostalgic smell for me. We were initially placed on the oncology floor because there wasn't room for him on the surgery floor. After a couple hours it became pretty obvious that he needed to be moved to the Pediatric ICU. He was not doing so hot. His ICU room was a little more intense. More monitors and equipment. Lower nurse-patient ratio. Only one parent allowed to sleep at the bedside. It was past midnight but the doctors were working hard to verify his condition. Kaiser was unable to send the x-ray and CT images, so the UCSF doctors didn't have much to go on. They quickly did an x-ray at his bedside and took him for the CT scan during the night. The plan was surgery in the morning, between 7 and 10 am. I went into a family lounge and tried to sleep on the couch.

Around 6:30 Isaiah texted, "Come fast." I came into a room full of craziness. Evan had another seizure. Following the seizure he became apneic (stopped breathing well). He was basically unconscious and completely unresponsive. There was a lot of stuff going on to get Evan stable but really he couldn't get stable until his shunt was fixed. Both the x-ray and ct scan showed that the catheter that goes into the valve at the top of his head was out of place, clearly explaining his issues. The neurosurgeon (who, by the way, was the same doctor who closed Evan's back in utero) was scheduled to come in at 7, and at that time would decide when Evan's surgery would be fit into his schedule. Immediately when he arrived he said that Evan needed to be done first. Hallelujah! He wasn't going to make it a few more hours in the condition he was in. He was prepped for surgery and wheeled off. I think Isaiah and I felt much more relief than fear towards the surgery. It was more scary to see Evan in such a terrible state, and we knew the surgery would fix that, probably immediately.

Sunday, March 15, 2015

What Happened?

Starting about last Saturday (3/7), Evan had a cold. Your typical runny nose/slight cough kind of cold. We still took him out to eat with Isaiah's family, and we took him to church on Sunday. He was fine; he just had a cold. Monday and Tuesday night he woke up quite a bit through the night. Twice, in the morning, he had some spit up/throw up that was just mucus. This was all understandable since he had a cold. Tuesday was especially fitful sleep so I finally turned him over to Isaiah who took him downstairs in the early morning hours to give him something to eat. The next morning (Wednesday) he was EXHAUSTED from the lack of sleep. He had two therapy sessions that were pretty much a bust. His PT even left early because he wouldn't stand or walk. He took multiple naps. Sarah and Maya came to visit in the afternoon. I warned them he would be cranky. They were prepared for the crankiness, but when Evan surprised Sarah with some sudden vomiting they opted to leave for the day. From then on Evan couldn't stomach anything. Every snack or drink he attempted came right back up, including water. The more his food came up, the more tired he became. He was sleeping most of the day. When he was awake he was sitting still on the couch, watching a show with his eyes half closed. He couldn't stand and he didn't want to crawl.

At this point we had two thoughts in our minds (and obviously we hoped that the first was true).

1) Flu
2) Or maybe, just maybe, this is a shunt failure

Shunt failure?
Shunts save lives. Shunts are also highly faulty. From before Evan was born we knew the signs of needing a shunt and the signs of shunt failure. Big head, vomiting, fever, lethargy--unable to wake, sunsetting eyes. Since it's so similar to the common flu I was told to always "wait a day" when you notice symptoms. After a day you tend to have a better idea of what's going on. (Also, if you go into an emergency room after your kid has had flu-like symptoms for just one day, they tend to dismiss you as an overly-paranoid parent, which we try to avoid being.) So Thursday night, when Evan was still unable to eat/drink anything, we drove to the ER, thinking, even if it was just the flu, he might benefit from some extra fluids. The wait at the hospital would have been 1-2 hours. We weren't that desperate yet, so we took him home, opting to go to Urgent Care in the morning.

The doctor at Urgent Care seemed understanding. "Sounds like it could be some virus." He prescribed zofran to calm Evan's stomach so he could eat. He told us if the vomiting continued or if he had signs of dehydration we should go to the ER. I made sure to mention that Evan had a shunt and we thought this could be shunt-related. He didn't validate my concern.

I picked up the magic pills and gave one to Evan. We went on a walk in the stroller while the pill took effect. When we got home he drank 1/4 cup of milk. It was the first thing to stay down in 2 1/2 days. Evan fell asleep on the couch.

While he was sleeping I was on the couch next to him Googling (for the umpteenth time) the signs of shunt failure. Increased head size? No. Fever? No. Unable to wake up? Not really...he was tired but I could get him awake. Vomiting? Yes. I just couldn't tell yet.

He started crying. I tried to pick him up but he was bending backwards so I couldn't hold him very well. His whole body got tight. Everything went rigid. He legs turned out kinda funny and his hands curled all palsy-like. His eyes went up and to the left. I had never seen one, but I figured this was a seizure. My first panicked instinct was to catch it on camera. (Ok, so I'm not the most experienced first responder) I put him on the couch and filmed him with the iPad for a few seconds. When he didn't relax I tried to pick him up again. I could tell his chest was tightening like he was holding his breath. Then his lips turned blue. I patted his cheeks and pushed on his chest twice, thinking that it would knock him conscious so he would breathe.

Am I trying to do CPR? Do I even remember how to do CPR? Are any of my neighbors doctors? If I leave the house to find someone to help will Evan be breathing when I come back?

My next thoughts were fast and confused.

Get him to the ER...NOW
I don't think he'll cooperate with the car seat
I'll pick up a neighbor to hold him while I drive
Can I get to the hospital fast enough?
Wow, I think my child just had a seizure
Is he going to stop breathing in the car?

I grabbed my phone, keys, wallet, and Evan, and rushed to the car. I couldn't get him in the carseat.

Plan B (which obviously should have been Plan A)
Call 911

Now my real first aid training was kicking into my memory.

9.1.1. Send
Remain calm (I'm breathing fast)
Speak clearly (I'm crying)

I couldn't hold Evan and my phone so I put him down by the garage door while I gave my address and tried to answer questions about the seizure and his current condition. The person on the phone told me what to do and how to position Evan.

For the benefit of anyone reading this who may be present during a seizure:

1) Do not attempt CPR. Let the person go through the seizure.
2) Place the person away from anything they could hit if they start shaking
3) Try to position the person on their side. Often they will throw up and placing them on their side will prevent the throw up from choking them

Basically, don't do anything I did. Except DO call 911, especially if they stop breathing or if it is a first time seizure.

The person on the phone kept talking to me until I could hear the fire truck's siren. The fire station is less than a mile away and the fire truck and ambulance arrived SO fast. They gave Evan an oxygen mask and tested his blood sugar. They got his carseat from my car and strapped it to the stretcher for the ambulance ride. They reminded me to lock up the house. They drove my car to the hospital so I'd have a way home. (In my mind I'd be returning before Isaiah would make it to the hospital.) They were calm and clear and helpful and nice. And I was brave and calm (ish) and answered all their questions. I just felt bad Evan wasn't conscious enough to get excited about the fire truck and ambulance.

And...this will be continued in a future post.

Saturday, March 14, 2015

Shunt Failure

Vomiting for 2 days
Extreme fatigue
Low grade fever
Trip to Urgent Care
Prescription for Zofran
Sleeping all day
Blue lips
1st ambulance ride
Blood tests, urine sample, flu/RSV swab, x-ray, CT scan
Transfer to UCSF
Verified shunt failure
Shunt repair (new shunt) surgery scheduled for any minute now

Evan is handling it like a champ. This was him yesterday, early evening.

 We'll post more details and updates later. Thank you for your prayers, love, and concern.