2nd day of Keto Diet

It seems like it should have been an easy day, but I think in general when you’re in the hospital, no day is an easy day.  Last night, baby Z was poked every 2 hours for blood sugar.  They just prick the fingers (or in his case, the toes), like you see on the commercials for diabetes.  He was so exhausted from getting the IV and getting his blood drawn yesterday, that he actually slept through the pokes during the night.  But, he was up at 2 a.m. for a feeding (which may become our new normal because he’ll need to eat more often on this diet).

Today though, his IV came out, so they had to put another back in, and they needed another vial of blood too.  At least the nurses learned from yesterday that he really is a hard stick, so they called the transport team to come do it.  Even they had a hard time, but they finally got it in, and they actually listened when I told them NOT to pull pressure to draw the blood, so they let it drip into the vial and that worked much better.  image

Baby Z took the whole thing well.  In fact, he took it too “well”.  He didn’t cry when they put the band around his arm before the poke, nor did he cry during the actual poke, and she had to push the needle in, pull it partially out, re-push it in, pull it out, over and over, and still didn’t get the IV in.  So then her partner found another spot and did the same thing, but they finally got it.  But, baby Z didn’t cry during any of it.  It was actually quite depressing, because it was like he lost the will to cry because he couldn’t control the situation, he couldn’t get away, and his own mother wouldn’t help him.  UGH.  My poor, sweet baby.  I try to tell him over and over how I am trying to help him, and that I’m so sorry when they poke him.  I wish he could understand just how much I love him and want to help him.  But, all he knows is that *I* am the one who is always here when bad stuff happens to him.  He won’t even look at me after.  😦  But, I just try to snuggle and hold him and talk to him about what is going on, and tell him over and over how much I love him.

Even though he didn’t cry during the blood work, he had a rough day.  He cried a lot.  A LOT.  He didn’t want his food, his paci, or anything.  But, he did want to be held a lot, so that’s what we did most of the day.

The neurologist told us that he is having less clinical seizures (the ones we can see) and is having more sub-clinical seizures (the ones that aren’t noticeable).  He is still showing hypsarrhythmia in the background of the EEG. But, the neuro said it is moving in the right direction.  So, I guess that’s something.  

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As far as the diet, today he started having more of the ketogenic formula than the regular formula.  He’s still not making ketones, but maybe in a day or two.  His blood sugar checks and specific gravity have been fine.  Tomorrow afternoon he’ll transition to all ketogenic formula, and we’ll learn when and how to prepare real food at a 3:1 ratio.  We’ll also get a list of approved products to use for pain/fever medicine, teething medicine, lotion, shampoo, toothpaste, etc.  His real food will consist of 3 parts fat (butter, cream, etc) to 1 part protein+carbs, so it should make for some unique recipes.  It requires a very precise digital scale, not just to 1 gram, but to 0.1 grams.  I ordered it from the Charlie Foundation, per the recommendation of our dietitian.  If you need one, look for it half way down the page here:  http://www.charliefoundation.org/resources.html

Abby and Joel came by tonight, and it was good to see them both.  I wish we could see them more, but it’s just so hard to get Abby enough sleep coming down here each night, with Joel in traffic to get home, pick her up and then head all the way into the city, stay a bit, then head home.  She’s been through a lot, and I’m not sure if it’s the stress, the new daycare, having a really busy weekend, or just being in school (or all of the above), but I’m crossing fingers that she stays healthy, because tonight she was complaining about her ear hurting, and she sounds a little congested.  Joel really needs to be at his “new” job, but obviously I can’t take her to the Dr., so hopefully she stays healthy and kicks whatever she’s getting.  Needless to say, I didn’t let her hug and kiss on her brother, which is really hard for her, but at least she understands!

Here’s our less than homey digs. lol

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“Karate Kid” Pose

For those of you who remember the first Karate Kid movie, there was a pose he did on a stump in the ocean. That is what baby Z’s pose reminds me of. It’s almost always the same.

Karate Kid Pose during Infantile Spasms

 

 

 

 

 

 

 

 

 

 

 

 

2nd Trip to the ER

Baby Z had been taking his medication, but the seizures kept coming and coming.   By Sunday night, they were coming every 2 hours apart, then every hour apart.  We spoke to the on-call neurologist, who had us give him an extra full dose, but still the seizures continued.

Because it was rush hour and heading toward the middle of Houston could cause us to get stuck in traffic, I decided to go to the nearest Texas Children’s Hospital.  It was at the same location as the neurologist, so I figured she could stop by and see him.

When we arrived, I signed in, and thankfully because he was a baby and I had put down that he was having seizures, we didn’t wait long in the waiting area.  But, as soon as we started to walk back, he started having another seizure.  It was a mad rush of nurses and doctors getting him into the room and getting him oxygen and an IV.  They gave him meds to stop the seizure, and we waited.

Here is baby Z in my arms in the ER.

 

We were admitted to the hospital, but just for the rest of the day to make sure his vitals were back where they needed to be.  But, it turned into an overnight stay.  Here he is admitted to his room.

 

By the next morning, his vitals were good, and we were almost ready to go home, but he started having another seizure.  So, they wanted to transfer him to the Texas Children’s Hospital in the medical center.  (I hadn’t realized at that time just how different a suburban hospital was from the medical center hospitals, but I learned very quickly!)

They needed to take him by ambulance, in case anything happened on the way, and they told me they were taking him to critical care, one step below the ICU.  Unfortunately, they didn’t have room for me and my daughter, so I had to follow the ambulance 30 miles or so into the city.  I tried to hold it together for my daughter’s sake, but I didn’t.  I couldn’t.  I cried the entire way.  Seeing your baby on a gurney, loaded into an ambulance, and taken to critical care in the med center will seriously mess you up.  I wish I could get that image out of my mind.

Since it wasn’t a life-threatening emergency, the ambulance drivers went the speed limit and they knew I was following behind.  So, when we arrived at the hospital, they flagged me down and told me where to go to valet, so I could be with my little one as they took him to his room.  I know they had told me we were going to the Critical Care Unit, but I didn’t really know what to expect, and I wish someone could have prepared me.  Although, I don’t know that anyone could have prepared me for what I was about to see.  They halls were lined with huge photographs (20″x24″) of babies and children that had been there in years past.  But, they weren’t cute pictures of healthy babies and kids.  They were pictures of really sick kids with tubes and bandages and casts.  But, still I was focused on my little one on the gurney in front of me.  Until they wheeled us into the room.  You see, it wasn’t the cushy, private room like we had last time.  It was what they called a “pod”.  It was a large room with a station in the middle with all the gear the nurses might need, and four “rooms”, two on each side of the station, with curtains as separators.  Three of the four were full, and my little guy made the fourth.  It was chaotic, with the kids, parents, televisions, nurses, and all the beeping that goes along with keeping kids in critical care well.

It was NOT what I had expected, and it was scary as hell.  These kids were really ill!

Thankfully, I accidentally overheard someone tell someone else that we were there because the hospital we transferred from wanted my little guy watched by neurology, but the neurology floor was full.  (Yes, folks, Texas Children’s hospital in Houston has an entire floor dedicated to neurology patients, and it was FULL.)  The docs at the suburban hospital thought my baby needed more watching than a standard hospital room could provide, so they put us in Critical Care.  When I asked about that, they didn’t seem to want to confirm that, but someone finally did.  I’m not sure why, because that actually made me feel better knowing that he wasn’t so ill that he needed to be one step below ICU, but he was just there because of logistical reasons.

Anyway, we were there, and there was nothing else I could do.  So I pulled my curtain for a little privacy, tucked my sleeping little guy in his blanket in the crib, sat in the reclining chair that would be my bed for the next 4 nights, and tried to keep the tears from falling just from the pure stress of it all.

 

2nd Seizure… Trip to the ER

Baby Z had his second seizure. This time it lasted longer and I knew it wasn’t normal. It lasted long enough for me to recognize something was wrong, pick him up, walk him through the house, open the back door, flag down my husband who was in the farthest corner of our yard mowing, have him walk over, and then we both discussed the possibilities. But, even though it seemed like a long time, it was probably only a minute or maybe two.It didn’t seem like an emergency, so I called the on-call pediatrician. I talked to the on-call nurse first, and explained what had happened. It took a long time for the on-call pediatrician to call us back. In fact, the nurse had told me to wait 15-20 minutes for the call, and I had to call in several times to let them know I hadn’t yet gotten a call. So, they kept re-paging the doc, and finally I heard back. The on-call pediatrician listened to the symptoms and calmly explained to me to go to the ER, but not to just the closest ER, but directly to Texas Children’s Hospital in the medical center. So, I tried to calmly pack up enough bottles to last a while (since you never know how long you’ll be in the ER) and I left my husband and daughter at home until I got more information.When I arrived, I ended up circling the hospital 3 times until I could figure out where to park. You see, the Houston medical center is a very intimidating place if you don’t know your way around. When I finally parked and entered the hospital, I was in a daze and still didn’t know where to go. They did get me in very fast though. Once we got to the room, we were visited by a nurse, and then later, a resident. (It’s a teaching hospital.) I think they both thought I was CRAZY. Because, here, in front of them was a beautiful, healthy, cooing, smiling happy baby boy. They took his history and he hadn’t been sick, hadn’t had fever, and there was nothing visibly wrong with him. So, the resident nicely explained to me that sometimes seizures happen and that it can be normal, so they’re going to send us home. But, he decided to have his boss check in with us too. So, the attending steps in, and same thing… she sees a beautiful, healthy baby boy and his CRAZY mother, and they decide to send us home. They completely blew me off.But… the hospital was s-l-o-w in processing the discharge paperwork, so we sat in the room a long while, and baby Z had a bottle and started to get sleepy. I had realized that the past 2 seizures that I had seen had been right before he was about to fall asleep. I remembered the telephone conversation with the on-call nurse who just happened to mention to me to try to get a video of it to show the doctors. So, as I sat (in the ER), I rocked my sweet baby and had my cell phone video camera ready.Then, it happened. His little eyes locked up and to the right, and his little right arm locked out and sort of twitched. As soon as it started, I pushed the call button for the nurse, and I started the video. By the time the nurse came in, it was almost over, but he saw the tail end of it. Then he saw that I had a video. He watched the video, then took my phone to show the doctors. Then, all of a sudden, I had a whole lot of people in our little emergency room, and they started really checking him over. Because he was such a healthy little guy, that’s what made them concerned about the seizures.It wasn’t long before we were admitted and moved to the neurology ward. That’s why our on-call pediatrician had told us to go to TCH in the med-center. Because if it was neurological, they have a whole floor and a whole team of pediatric neurologists to help him.You can see the video of this seizure here (but please note that the shaking is not him, it was me trying to get his attention because at the time I didn’t know exactly what was happening or what to do):

Some pics of our hospital stay:

Baby Z after being admitted to the neurology ward at Texas Children’s Hospital

BabyZ after getting surprises from his Grandma, Grandpa, Aunt, Uncle and cousins…

BabyZ in a hospital gown, still smiley. I wish I had known we wouldn’t have much longer to enjoy that smile… 😦

Artwork by big sis to decorate the hospital room