Do the Helen Keller

Did you find this:

Water, Helen! Water!

super offensive?

Yeah? Well, you might want to go ahead and skip this story.

Today I discovered my daughter is either the most clueless child on the planet, or she’s a grade A a-hole.

It’s not out of the realm of possibilities that it’s actually a little of column A and a little of column B, as well.

So, my almost-six-year-old daughter goes to daycare after school and I pick her up after work. When I was walking up to the big glass doors of the daycare today, I notice my daughter was playing with a sweet little girl who happens to be blind.

My daughter sees me on the other side and shoots out the door, grabs her backpack, and starts trotting over to the car.

“Did you have fun today?” I ask her as we walk.

“Yeah! I was playing hide and seek with my friend!” she chirps.

Well, that’s just rude. I mean, the kid is blind for shit’s sake. Of course she’s going to lose that game. What the actual eff, kid? I glance back at the daycare door and notice the little sight-impaired girl running around frantically.

“Aili,” I stop my child in horror. “Did you say goodbye to your friend and tell her you were done playing?”

“No,” she replies because clearly I am an idiot. Why would she have to do that?

“Dude. No. You need to go tell her the game is over. She can’t see that you’re gone.”

“Oh yeah,” replies Aili, flipping her blond hair around like a tiny little stereotype. “I forgot she can’t see.”

As Aili slowly walks back to the door with her eyes on her friend who is still looking for her, she giggles a little. “That’s kinda funny.”

Oh my God. My daughter is going to Super Hell. Seriously.

Surgery in St Louis part 9

As Peter would say: It was our last full day in St Louis… or was it?  He is really in to the ominous add-ons right now. I’m not sure why.

Anyhow, I decided it was time to do something I desperately wanted to do. When I was little, I dreamed of being a geologist. But, after years of being bad at math, I was dissuaded from being in science. So, that dream fell away but it never stopped me from being completely fascinated by rocks and minerals. When I heard that the Meramec Caverns were just a short drive from St. Louis, I couldn’t resist. I HAD to go.

So, in the morning, I piled the boys in the car, popped a DVD on for them and took a nice, leisurely drive out of town. Missouri has some nice countryside, let me tell you. And the drivers are so much nicer than in other parts of the country. If you want to change lanes and put on a turn signal, someone will make room for you. It is definitely not like that in some other places I have visited or lived.

After about an hour of driving, we were there. The boys weren’t initially impressed, but they were quite enamoured by the lazy river cruise. Since it was already back-to-school time in Missouri, we were the only ones wanting to take a boat ride and the boys were the only kids in the area. The boat captain was a real sweetheart and even let Peter drive!

He could barely see over the console, but he loved driving us up the river!

It was a wonderfully relaxing ride where we say turtles, deer, and even a blue heron.

It was significantly closer than it appears…

After the boat ride, I BEGGED the boys to go on the guided tour of the caverns. I was a little worried it would be too much walking for them but even if we made it only 5 minutes, I would have been satisfied. Because this was inside:

Ooooh.

Aah!

There are only 2 formations like this in the entire world and I was 3 inches from one of them!

Trust me when I say I have about a thousand more pictures of the caverns that I could bombard you with. I will restrain myself.

The boys enjoyed the tour because there was no complaining and they made it through the whole thing without getting too worn out. At the end there was even a light show that really fascinated the kids.

How patriotic!

It was worth the drive and the convincing to go out to the caverns. I was over the moon with my geological nerding.

And bonus, the boys took a nap in the van the whole way back.

They were still struggling a little with getting enough to drink and they still weren’t able to eat any soft solids, but that’s okay. We were going home the next day, right???

 

 

St Louis Surgery part 8

The second day after surgery, the boys were in better spirits and were starting to perk up a little. We were still struggling to get nutrition in them, though. Peter was a real peach. He knew I was worried about them getting enough in them so every time he drank a little water or juice, he would proudly show me his cup and point to his progress. I didn’t have the heart to tell him what I needed was for him to drink milk or yogurt or meal replacement drink. Juice and water just didn’t cut it.

I decided to try another outing with them so we went to the St Louis Zoo. I had heard it was really fantastic and BONUS! it had free admission!

My jerk of a GPS gave me a nice tour of Ferguson again before eventually leading me to the zoo. I really hate that thing.

When we got in the zoo, I immediately asked a guide how to see the most while walking the least because the boys were recovering from surgery. She gave us some good tips, but failed to mention there was a wagon rental. I was a little annoyed that by the time I realized I could have rented a heavy duty stroller thing, we had already gone through all the attractions the boys wanted to see.

But, that aside, the zoo was amazing. There was an adorable little train that we bought tickets for. It took us on a nice ride all around the zoo and gave the boys a nice, long chance to rest.

In the tunnel we go!

After the train, we went to see the sea lions. Peter had been hopeful for sharks, but that just wasn’t in the cards. Sea lions were an acceptable alternative.

They swam right over us in this neat little tunnel!

Watching the sea lions swim.

It’s a little hard to see, but Robert was dragging around a hotel hand towel with him everywhere. He was drooling a lot and didn’t want to swallow it or dribble all over his shirt so, he had a towel pressed to his face all day. It reminded me of Linus from Peanuts with his blanket.

There are apparently butterflies in here

Immediately after the sea lions, the boys decided they were done. To be fair, we had seen the African animals, went on a train ride, visited the hippos and rhino, and went through the bird lake. So, they were tired. But, I really wanted to see the Butterfly House. The structure reminded me of a place I had visited in Germany and I was just dying to go inside.

Well, when you have two crabby, virtually non-verbal boys who are still in recovery glaring at you….you make your stay in the butterfly house very short. I may have possibly seen a butterfly. Maybe.

After the zoo, the boys’ hunger kicked in and they wanted something real to eat. I had my doubts about their ability to eat anything solid, but I was willing to let them try. There was a Chili’s attached to our hotel so I ordered little cups of macaroni and cheese and mashed potatoes.

It was a miserable failure

Robert was so hungry and he wanted that macaroni SO much. But, the pain of eating was too much to allow it.

This boiled my blood. That nurse who claims tongue reduction isn’t painful is irresponsible. Robert loves to eat. If it didn’t hurt, he would wolf that cup of macaroni down in 3 seconds. I know my son, I know this surgery. If someone tells you it doesn’t hurt, ask them if they enjoy the sensation of biting their tongue. Does it hurt? How about tearing a muscle… Does that hurt? Yes, yes, yes. Surgery hurts. Healing is not immediate. A muscle that has been cut is going to hurt as it heals. That’s pretty darn normal. I know that, but I am extremely upset about all the other patients who have never had a tongue reduction before and are now scared because its not supposed to hurt, according to the nurse.

Eventually poor Robert gave up and had a yogurt drink.

And we all slept like rocks that night. 🙂

Surgery in St Louis Part 7

It was two days after surgery and we still had a couple more days until we could fly out. I was bound and determined to give the boys a little bit of fun during this trip to make it a vacation for them….in a roundabout way.

One of my co-workers had clued me in to the St Louis City Museum.

It was exactly as it was described to me: a wild fun house that was awesome for kids AND adults.

It was like MC Escher threw up in here

The design was beautiful and bizarre. I kept looking around for David Bowie in a codpiece. Yes, I was looking around hopefully.

And there were sharks!

There was an aquarium inside the museum (yes, it’s THAT BIG) that had sharks and other sealife. Peter spent most of his time in the hospital watching Shark Week on Discovery so, he was absolutely entranced by the shark tank.

How cute, Satan!

And then there was the most evil looking otter I have ever seen. He was kicking his cute widdle paws at the glass and biting at it with his cute widdle mouth….because he clearly wanted to give us all love and chew our faces off.

Pictures don’t do this justice.

It was an absolutely amazing place. Floor upon floor of wonders. But, the boys were still recovering and pooped out fast.

Real fast.

So, we unfortunately didn’t get to stay very long, but it was worth it. After the museum, we drove around town while the boys napped in the car.

The Scott Joplin House!

The historical music geek in me was real sad we couldn’t stay and go in. But, the boys were just exhausted by this point.

The Arch!

This was as close as we could get to the Arch. As you can see, there was tons of construction. There were signs proclaiming the arch was still open, but I think they were meant as satire. I mean, I never actually found where to go to get to it and my GPS was kind of a jerk. It kept taking me in circles and once I was out of downtown, it kept suggesting I go to and through Ferguson. Uh, no thanks…

St Louis Surgery Part 6

When we last left off, the boys had just gotten out of the hospital and were resting in the hotel.

In the hospital, they had been under threat of staying in there longer so, the boys complied with all the demands put upon them. They took their feedings through a syringe, they got up and walked… They were basically model patients.

That all fell apart when we got out. No longer under threat of Nurse Ratchet forcing a feeding on them, they shut down. They wanted to stay in bed, they didn’t want to drink anything, and they certainly weren’t up for any exploring of St Louis.

I was getting more worried the more they shut down. The nurse and I had our differences, but I was pretty sure she was right when she said they needed at least 60g of protein and 55oz of liquid per day to heal properly. Last time we went under the knife, no one ever mentioned protein was essential to heal their little tongue muscles. I know they had milk and other drinks with protein, but I never kept track of how much. I don’t know how closely its connected but, Peter’s stitches dissolved before his tongue was healed and it more or less fell apart the week after surgery. I did NOT want that to happen again. I got pretty frantic trying to make sure they drank the right amounts of the right things and the boys resisted as much as they could.

I strongly considered bringing them back to the hospital, knowing full well it would probably be another $10,000 demanded from us.

Fortunately, the boys hung on and started slowly drinking from cups in the evening. It wasn’t as much as was prescribed, but I was willing to accept it for what it was.

This whole time, Peter was the one who surprised me. He had had a more difficult recovery in the hospital, but he was definitely quicker to be up and at ’em.

A cast and surgery recovery weren’t enough to keep him out of the pool…

That night I was still worried about them and doubting my judgment. Maybe I should bring them back in….maybe we shouldn’t have done this…. But then,

Worth it.

Watching them sleep, able to have their mouths closed….it was amazing. It was something I have never seen before. It took all my doubts about the surgery away and gave me renewed motivation to get them to drink and take their medicine.

Take my what?

First Day of School

I want to take a quick break from the surgery saga because today is a Big Day. It is the first day of school! And most important about that is the enormous milestone that is my baby becoming an all-day-school Kindergartener!

I thought I was even-keeled enough to just give her a happy send off on the bus. And I think I would have been okay, but then the bus driver asked her to turn around when she got on the bus for one last picture. Oh, the water works started. But, I kept it together until the bus was at least out of sight.

My kindergartener and 2 second graders

Cue the tears…she’s so grown up!

Spoiler alert: As you can see, the boys are recovering wonderfully from surgery, but we will continue unfurling that tale tomorrow!

Surgery in St Louis part 5

The day after surgery was “work day”.

I was to borderline force them to try to eat or at least put things in their mouths.

Robert was a pro at putting ice cream in his mouth and then letting it dribble all over himself to avoid swallowing.

And I had to get them up and out of bed. That was much easier because they clearly missed each other. They may beat on each other all day when they are completely fit and healthy, but when they don’t feel good, they want to be close to each other. Peter was especially needy and had been asking where Robert was right from the beginning. 

 

They got reunited and taken for a walk to the play room. But, they quickly tired out there. 

They did manage a few rounds of Rock’em Sock’em Robots, though…

After a nap for each of them (and one for me, too) we started working on getting the boys to take actual feedings through their mouths. Using a syringe, I painstakingly squeezed drinks of chocolate milk in to their mouths. They hated it and tried to do anything in their power to avoid feedings.

Eventually through bribery, threats of staying longer in the hospital, and sheer will, they took a full feeding orally. And with that, they were graduated to the regular hospital population.

Happy to be out of the PICU

The boys were a little stressed by the move so, they refused to go to their own rooms. They had rooms next to each other, but Peter preferred to just sit in the rocker in Robert’s room. 

We then got the good news that if they boys could take another full feeding (a single serving carton of chocolate milk was considered a feeding) in the afternoon, we could be released to go home. The boys weren’t very hungry and definitely didn’t like having a syringe in their mouths, but they wanted the tubes out of their noses, the IVs out of their arms, and the “luxury” of a hotel bed was enough motivation for them to each take a feeding without fighting.

Before their release, I ran to the Target that was right behind our hotel and got milk, yogurt smoothies, instant breakfasts, nutritional shakes….the whole nine yards. I was going to be ready for them! 

And then, it happened! We got all the monitors and tubes removed. We were going home!

I was a little excited to get them out of the hospital

We hustled to the hotel and I tucked my guys in to bed. They fell asleep right away, clearly relieved to be together and out of the hospital. And then I caught the picture that really says it all about why we took this trip. This is why we begged for help, took out loans, fought and clawed our way to St Louis….

Sweet Peter

This is something I have never seen before. Ever. Not even after the first surgery did I see anything like this. Peter, my sweet little man was sleeping with his mouth comfortably closed. He was never able to do that before. He would barely do that while awake so, to see him completely relaxed and still able to have his mouth closed….amazing. This made it all worth it.

But, we still had a ways to go before we could get home…

 

St Louis Surgery part 4

When we last left off, we were in the recovery room at Mercy Hospital. Both of the boys were out of surgery. Robert was clearly outpacing Peter with speed of recovery. Peter was hitting people with his cast.

Dr. Marsh talked to me for about 5 minutes about how the boys did and asked if I had any questions. When I didn’t, he shot out of that hospital like he was on fire because apparently we were his “last day of school” appointment and he was antsy to start his vacation. (Of course, right?) I never saw him again.

The boys were quickly wheeled out of recovery and brought up to the pediatric intensive care unit. Considering how well they were doing, it seemed wholly un-necessary. (Just another extra charge on our massive bill, I guess.) But, in hindsight, it was nice to have more nurses more actively involved with them. They required a lot of attention just because they were scared.

When we got up to the rooms, the same nurse who told me the surgeries didn’t hurt started talking to the PICU doctor about what to use for pain management. I held my tongue, but just barely. Pun intended. We ruled out IV drugs because they are bloody expensive and settled on regular Tylenol and Motrin.

Oh, but wait! The boys have a red dye allergy. The hospital doesn’t have dye-free Tylenol or Motrin. Yes, you read that right.

“If you would have informed us of their allergy in advance, we could have been more prepared,” the nurse scolded me.

Yes, because all that paper work I filled out beforehand was for funsies. Why would the nurse read the page with the allergies, after all? Also, aren’t I an idiot! I assumed a major metropolitan hospital would have TYLENOL. Gosh. What is wrong with me? I bet they scold the people who come in with latex allergies, too… Not.

So, I had to go to Walgreens as my sons sat alone in the PICU to buy Tylenol. I’m not kidding.

Yes, it really happened

I mean, I was pretty pumped that Walgreens was running a “buy one, get one 50% off” special on children’s pain relief, but honestly? I was not impressed. (I was even less impressed when I got an additional bill from the hospital for them to administer it. But, let’s not dwell. Yet.)

I was finally back with the boys and they were petrified. The children’s hospital at Mercy is all pretty new so the suites are all single patient. That’s lovely…until you have two children in at the same time. I spent my day running back and forth between the rooms. I would wait until one child fell asleep to bolt over to the other child or listen for crying to choose which room I would spend time in. It was absolutely exhausting.

When I couldn’t be in his room, he needed his teddy

I made a vain attempt to go back to the hotel for some sleep at one point, but another patient coded and there was commotion, alarms, shouting….yeah. I wasn’t going anywhere. I slept in my clothes on a tiny foam couch in Robert’s room for most of the night because Peter was doing a better job with sleeping.

He kept falling asleep watching Shark Week.

This was, unknown to the boys,  the easy day of their recovery. The following day was going to be the day they were forced to RECOVER by their nurse. She wanted them up, drinking, and out of the PICU as fast as possible. I knew they were having a great recovery, but I was still a little unsure how they would accept drinking. I mean, they had feeding tubes in that gave them their medicine and food today. What would they do when they were told to just drink some milk tomorrow?

Surgery in St Louis part 3

The day was finally here. After the trip, the fundraising, the loan….we are finally at the morning of the surgery!

We got up at the crack of dawn and I dragged my sleepy little boys to the surgery building. (Right? This hospital was so big, there was a separate building for surgeries. Insane!) They were would up pretty tight with nerves so, they were difficult to contain.

I went to registration and the clerk looked at me and said, “And do you have you payment with you?”

I almost died. I tried not to bite her head off, but I very firmly explained that we made all the payment on the phone yesterday. She disagreed with me because I had no receipt. I explained that my cell phone does not have printing technology quite yet. I suggested she call Dr. Marsh’s office manager. The clerk got huffy but eventually called over.

Shocker: we were fully paid.

They allowed us in and the boys started getting prepared for surgery.

 

The internal waiting room had a bubble machine. It was the exact same one the boys hung out with in Ann Arbor before their last surgery. I took the picture for nostalgia’s sake, but the comparison turned my stomach a little. I didn’t want this to be like last time…

Robert was combative because he was scared so, he was taken in first. Peter and I got to spend some quality time watching cartoons, taking selfies, and watching Peter start getting high as a kite when he was given some sedatives.

High as a kite…

Right after Peter was taken back the nurse tried to mother me and insisted I go to the cafeteria and get something to eat. I resisted the urge to kick her in the shins, and briefly disappeared so she would be fully convinced I went to the cafeteria.

We had been on shaky terms with each other since the day before when she told me tongue surgery doesn’t hurt and I called her out on that. I’ve had tongue surgery. It hurts. She claimed that her 35 years of experience caring for patients trumped my actual pain. She knew better about whether or not I experienced pain during a surgery 11 years ago that she wasn’t present at. We had some words.

As soon as I hit the waiting room, I could hear Robert crying. So, I followed the howls to the recovery room. I told the nurse at the room my son was in there and I had been told to join them in recovery. (I was, promise.) She told me my son wasn’t in there.

Now, I have my moments of sheer stupidity, but I know what Robert’s cries sound like. I was quickly turning in to the Hulk’s mother and preparing to bust out a wall to get to him when the nurse came back, looking sheepish.

“You were right.”

I know.

I went in with Robert and he was super confused and sleepy. Despite the stitches and drainage, he looked good. He even asked for some water! It was such a different post-op look compared to last time.

He took a sip of water, and then fell dead asleep.

Trust me, this looks GOOD for 1 hour post-op!

His recovery was working out so shockingly easy, I was really looking forward to seeing Peter. If crabby, difficult Robert was having an easy time, Peter would be a breeze!

You know, by this point in my life, you’d think I would know better than to have those thoughts.

As you may recall, Peter has a cast on his right arm right now from a soccer injury. A cast on a sedated, confused, scared little boy becomes a weapon. When Peter entered recovery, he was swinging that cast around like a club, making contact with anyone who was mistakenly in the line of fire. I got clubbed a few times when we were trying to calm him down and let him know he was okay. Eventually we were able to get no-no’s on his arms to protect us and Peter from damage and he settled in to an unhappy nap, too.

He hated those Nemo no-nos.

Since I am getting long-winded and the rest of surgery day gets ridiculous, we will continue this tomorrow…

 

Surgery in St Louis part 2

Our second day in St Louis started off pretty easy. Robert is a huge fan of continental breakfast, especially when it is free.

After a good feed, we were all set to go see Dr. Marsh for the very first time. We got in the car, plugged the address in my phone, and set off.

And that’s where everything went downhill.

I have the ability to get lost literally anywhere. A hospital is no exception. There are multiple towers in Mercy Hospital and they all have different numbering systems. I spent a good half an hour wandering aimlessly with the kids until we finally got where we needed to go.

And once we got there, well…

I don’t want to say his office manager was bad, but I don’t think we got off on the right foot. She was abrupt with me and seemed kind of rude because we were intending to self-pay for the surgery as a back up since insurance was still fighting us. (I would think self-pay would make them happier? I mean, they don’t have to haggle with a company and wait for payment. They just hold up actual people until they cough up cash. But, that’s another story…) I was kind of still trying to make the self-pay a back up plan. I was hoping we could bill the insurance and see if they would accept any of it, and then be billed the difference.

Well, she told us we weren’t allowed to even try to bill the insurance. We had to have the whole payment in full NOW.

I panicked. We didn’t have $26,000 yet.  We had only managed to save and fundraise $16,000. We were ten short. And they were very firm about no full payment, no surgery.

I didn’t know what to do. I was crying, the boys were confused… So, we went down to the financial aid office. It was a non-profit hospital, after all. I talked to a man who told me that based on our finances and the financial burden, we should only owe about $2500!! Wonderful! I was ecstatic! I went back up to the doctor’s office, and Kristin gave me her now patented Sour B*&%$ Face and marched us back down to financial aid. She went and had a private conference with the officer I talked to and when they came out, my bill was back up to $26,000. Pert of me bitterly wonders what exactly she said to them to get them to change their minds. And why couldn’t I have been involved with that meeting? Shady.

Apparently charity isn’t available for “optional” surgeries. You know, because I had three different doctors including two cranial-facial specialists referring the boys because it was not a cosmetic procedure…still optional.

So, we left with no hope. How were we going to get $10,000 in less than 5 hours? They wanted us paid in full before the office closed that day or our surgery would be cancelled and we would have to go home.

I took the boys to their pre-op speech appointment while making calls, sending out pleas for help, and trying not to cry. I can barely remember one thing the therapist told us because I was so pre-occupied with the big, glaring $10,000 hanging over my head. Thank goodness she gave me a folder of information to take with me.

I took the kids back to the hotel after the appointments where they played and I tried to keep myself together.

I mean, at least they deserved to have some fun…

Well, without getting too far in to the gritty details, let’s just say there are a lot of ways to get loans in the US. Some places are pretty liberal with what they will give a person because they have ridiculous interest rates. It’s painful, but it happened.

By the end of the day, the surgery was fully paid for. My bank account was sobbing gently in the corner, but the surgeries were going to happen as scheduled the next day.