Bills… Bills… Bills…

Well, we’ve started getting all the bills now.  The first hospital stay at Texas Children’s was over $20k.    Needless to say, we’re so far past the point of meeting the deductible that now we’re past the out of pocket maximum.  So, from now, for the rest of the year, everything is “free”.  Ha.  Free.  That is, once we actually get it all paid.  Not that I’m complaining.  Really.  I’d do anything for my little guy.  But, it’s just something we hadn’t prepared for, and it’s just one more thing to stress about.

My husband’s company is getting purchase officially later this month.  We just changed insurance this past January and I feel like I just got the hang of all the changes, and now it will be changing again.   They tell us that the new insurance will honor the deductibles we’ve met this year till year end.  We’ll see.  It makes me nervous.  I mean, I know we’ll start over again in January, but I’m really hoping we don’t start over in September and also again in January.  Crossing fingers!

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2nd Opinion?

You know, with all the doctor’s we saw at our two stays at Texas Children’s, and the fact that we were following up with one of them who was familiar with baby Z’s case, it never really occurred to me to get a second opinion. I mean, we saw multiple fellows, attendings, and of course, tons of residents. Plus, where else was I going to find specialists in pediatric (infant) neurology. I thought we were where we were supposed to be. I thought we had the best of the best.

But, strangely enough, a second opinion just sort of fell in my lap. (Really. It’s a strange story that I’ll share with you soon.)

Anyway, now all the sudden baby Z has a 23-hour EEG scheduled for this week at another hospital with a specialist in pediatric neurology, and who further specializes in infants with epilepsy and Infantile Spasms.

I guess we’ll have our answers soon enough. I don’t want my baby to have IS, because it’s a worse diagnosis. But, if he does have it, the sooner he is diagnosed and treated, the better. If that’s not what it is, at least we’ll confirm it, and know that we need to try something else to help him. I just want him to get the help he needs.

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