Sunday, July 29, 2012

Rolling In

We received the insurance statement with part of the surgery week listed. So far, we are looking at the following:

Pre-Surgery Labs $159.36 out of $621
Chest X-ray $64.18 out of $450
MRI $26.46 out of $3,224
Anesthesia for ICP Monitor $73.45 out of $2,600
Surgeon for ICP Monitor $245.13 out of $1,900
Hospital $0 out of $54,115.87
Random Hospital Doctor $544.90 out of $1,116
Anesthesia for Surgery $124.30 out of $4,400

The hospital amount for us is $0 for now only because All Children's did not file properly with insurance. We already paid $750 of the $1,500 co-pay to them, meaning we should get a balance bill soon. We have not seen the surgeon bills yet, either. We will have two surgeons to pay, and who knows what those totals will be. Usually, they each bill around $30,000 for this sort of surgery.

I am getting pretty nervous, especially since we did not get the Medicaid for which I applied. If we pay a premium, then we have Healthy Kids insurance starting in July. That does not help me with the balance bills of what happened in June. People say it can be appealed, but I have no idea how to do that. It's not like I have much time or money for getting a lawyer, either. Already, we have put out $5,100 in insurance premiums and co-pays this year. My FSA is pretty much spent, and we still have 5 months left to the year. My husband is jobless, and we don't know what the near future will bring. I go in tomorrow for a biopsy on a lump on my face. Let's just pray that isn't going to bring an ordeal to round out the year.

So, that is where we are post-op. Simon is healing well and remains as active as ever, but the financial aspect is hitting hard.

Thursday, July 12, 2012

Where are we now?

This has been Simon's face since we arrived home (minus the squint from the sun). His forehead is noticeably rounder, and I don't think that any swelling is masking the new look.

The incision has looked great!

He's definitely a happy boy.

Recently, the stitches have been trimmed and are starting to come out. Today is the last day of putting ointment on the incision. His hair is growing back at ridiculous speed, and the scar is looking really good.

Dr. Ricalde did a scar revision this time around, meaning that extra skin was trimmed off to make the scar much thinner. We will apply Vitamin E oil for a while to make the skin soft, but then that should be it. We will follow up with Dr. Tuite in about 2-1/2 months. In the meantime, Simon has to sit out of P.E. and be careful. That part is putting a damper on the summer, but we have high hopes that this will be it for the surgeries.

Surgery Week: Friday

On Friday, we headed home!

Dr. Tuite came by early in the morning and let us know that we should get discharged pretty soon.

We waited around for several hours and finally got released at lunch time, after getting up and packed. There was plenty of time to do some Hulk poses with the new tooth brush.

We went back to the Ronald McDonald House to clean and pack, and then we hit the road. We stopped by my dad's house on the way home, showing him just how well Simon was doing and also grabbing a bite to eat. Then, we resumed our journey. We made it home late, but all was well. Since then, Simon has been playing hard and acting as if not much happened. He does have a limit and gets tired at a certain point, but the recovery has been nothing like it was for previous surgeries.

Surgery Week: Thursday

Early the next day after surgery, everything was packed up from the PICU room and transported to the 8th floor. Here, Simon would get relief from all of the machines and check-ups. In fact, he was doing so well, that he was allowed to roam all over the hospital. He just couldn't walk out the doors!
Swelling was very minimal. He had some bruising on and behind his ears, and his forehead was a tiny bit puffy. Except for the raw incision running from ear to ear, you would never guess that he just had major skull surgery the day before.

Grandpa and Mormor were staying in a hotel nearby, and Simon loved having them around to play.

The view from the room was terrific.

Later, some cousins came to visit, helping a little more time to slip away. Before we knew it, Simon had to get ready for bed. Here is where we saw the most swelling. His eyes were puffy and red, and there was some bruising behind the ears. We were simply floored at how good he was looking. The puffiness and redness looked more like bad allergies than swelling from skull surgery.

As we settled in for the night, we had a nice, quiet time sitting by the window, taking in the view of the city. My little trooper had so much fun with me watching the night life unfold below.

During the course of the day, I felt like heaven sent a hug from my mother. Originally, we were told that we would end up back on the 7th floor for neurosurgery. It was a bit of a surprise that we ended up on the 8th floor for general pediatrics. It was even more of a surprise that we finally had a nice view. The other rooms gave us splendid pictures of the roof, but now we could see all of downtown St. Petersburg with Tropicana Field to the left and Tampa Bay to the right. The icing on the cake was the manatee. Each wing on each floor has an animal or some other icon to go with the Florida ocean theme. Our icon was a manatee. Why is this special? The manatee is my mother's favorite animal.

Wednesday, July 11, 2012

Surgery Week: Wednesday

The big surgery day was Wednesday, June 27. Simon had been hooked up to the ICP monitor for 24 hours, and the readings looked very good. The number was not supposed to go above 20 on a regular basis. It was normal for the number to spike when he coughed or sneezed or laid down, but in general the number was supposed to stay lower. Simon's consistently stayed lower throughout the day, even when he was jumping around in excitement during the air hockey match with his cousin. It spiked a bit when he was in his bed and slumped over a little, but again, that was normal. So, we were looking at the "simpler" surgery being done.
The nurse came in the room at 6 a.m. to make sure that I was getting up and ready, as Simon was to be wheeled down at 6:30 a.m. I was already up and quickly had a protein bar, got dressed, and brushed my teeth. I called Chris to wake him up, too.
We were ready to go, but transport was a little late. We ended up walking down a little after 7 a.m. Pre-op was easier because Simon had been in the hospital all night. So, we had not needed to drive over, check in, and so on. He already had IVs and a hospital gown, making it that much simpler. The surgeons, anesthesia team, and nurses trickled in. We waited only a little while before it was game time.
They wheeled him back around 7:45 a.m. We went upstairs to get our stuff out of the hospital room, because Simon was heading to the PICU after the surgery. Once we were all packed up, we went to the waiting room. Around 9 a.m., we got a call from the OR saying that they started at 8:30 a.m. and that everything was going well. We hung out with my dad, my sister, and my brother until our pager went off at 10 a.m. Simon was done! We went to the little room where the surgeons come to talk to you, and we heard nothing but good news.
The surgery went very well, and they did not even need the donated blood. Some bone was harvested off the back of Simon's skull and then placed over the openings by his temples. Titanium plates were put in as well. Simon was to spend the night in the PICU and possibly even go home the next evening. What a relief!
We had to wait a little while longer before we could actually go back to see him, because they were still waking him up. When we got back there, Simon's oxygen levels were a little low. He was waking up but still dozing off a bit. When he would doze off, the oxygen would be around 85 or 87 when they needed it to be in the 90's. Before we got there, it had been in the low 80's.
Once those numbers were in the low 90's, we packed up and headed to the PICU. Simon was super thirsty and got a sip of water before having the ride in his chariot to a new floor.
After settling in, we got everybody up there in small groups so that they could see Simon. One of our cousins showed up bearing gifts, and by that time Chris's dad and his wife had arrived as well. Simon had lots of love in that room!
Simon's chief complaint after fully waking up was the catheter. The nurse quickly got approval and removed that thing. For the rest of the day, Simon complained that it hurt to use the bathroom, but he was fine by the following day. Little boy was a bit grumpy, but that was to be expected.

He promptly puked up the sip of water that he had post-op, and that started the dance of figuring out a good balance of medication. They didn't want to do the morphine right away because of Simon's oxygen levels. When they did do the morphine, he proceeded to puke up anything he had consumed. So, they tried Tylenol. That wasn't enough for the pain, so we were back to the morphine and puke. What fun!
By that evening, the pain was under control; but bedtime presented its own challenges. As soon as Simon would drift off to sleep, he would hold his breath. Then, the machine would start a loud, obnoxious beeping. The nurse couldn't continue with morphine, because then Simon's brain would not have kicked in to remind him to breathe again. Simon did manage to eventually fall asleep and stay asleep, but the machine's beeping got even worse. Now, he was sound asleep and registering sleep apnea. I climbed into bed with him to keep reminding him to breathe, and eventually the beeping stopped. Once Simon crossed the threshold into deep sleep, his breathing was fine. As for pain medicine, we didn't worry about it while Simon was sleeping. I think that part of the breath holding was because of the pain, though. What could we do? We just waited it out.

Monday, July 9, 2012

Surgery Week: Tuesday

Now, let me talk about Tuesday, June 26.

Simon was scheduled to go into the OR to have a Camino Intracranial Pressure Monitor placed. Basically, Dr. Tuite had to drill a small hole in Simon's skull to place a bolt. Then, a fiber optic wire would run from inside the skull, through the bolt, and out to a machine that hung on an IV pole. We had to report around 6:30 a.m. so that the procedure could be done around 7:30 a.m. At the check-in they were admitting us as inpatient because Simon had to be in the hospital all night and would go straight to surgery the next morning.
I was already nervous about the upcoming 24 hours when I was hit with another stomach churner: a $1,500 co-pay. No, I did not put the decimal in the wrong place. Apparently, that was the amount that I needed to cough up then and there. So many things ran through my head at that ungodly early hour, and then I had an out-of-control child jumping into the chair next to me and being obnoxious. (This child was not mine. Rather, it was a kid about Simon's age who was running all over the place, jumping onto seats next to all sorts of people, laughing, and going crazy. The parents said that she was autistic and that they could do nothing about it. I have my opinions about that situation, but I will keep them to myself for now.) I finally told the lady that I could put half on my FSA but would need to be billed the rest. In retrospect, I should have asked if she could bill me for the whole thing. Anyhow, that is what we did. Simon got his bracelets, and we waited.
The wait was not long before Simon went back for the surgery. Simon's white counts looked good; the chest x-ray had a little something that anesthesia had ignored. So, we were good to go!
He was a champ the whole time that we were in the pre-op area, and he happily went with them to the OR. Seeing him riding happily into the sunset got me a little choked up, but we made it out to the waiting room.
The procedure only took about 15 minutes, but we had to wait a little longer so that they could wake him up. When we went back to him, he was still groggy and a bit out of it. Once they were happy with all his vitals, we headed up to our new home for the day: the 7th floor.
He was still groggy for a while, but that did not stop him from exploring the video games and other fun stuff in his room. He had IVs in his hand, which frustrated him a bit, but he learned to deal with it.

Later in the day, my sister brought her older son to visit, and Simon had a blast playing games. After a while, the nurse set things up so that Simon could get up and move around.

The boys went to the play room and tried out the air hockey table and pretend grocery store. Back in the room, the child life cart had come by; and Simon picked out crafts, a Battleship game, a Lego set and some other things. Simon did the painting crafts with his cousin, and time passed quickly. They had to leave after a few hours, and we were left to have fun with our little wi-fi hot spot. I slept in the room that night, and Chris crashed at the Ronald McDonald House.

Surgery Week: Monday

I am a little late coming back, but here I am. I need to recount the surgery week before I forget. So, let me start with Monday.

Monday, June 25
The weekend had been a wet one, and Tropical Storm Debby decided to hang around and continue to soak us for a bit. We had to be at All Children's Hospital by 10:00 a.m. for Simon's brain MRI, and the roads were looking bad. The Sunshine Skyway Bridge was closed down over the weekend due to high winds (sustained at 65 mph), and Bayshore Boulevard was well under water. People assured us that if we stuck to the interstate, we should be fine. The interstate and hospital are on higher ground and not prone to flooding. So, we left at 7 a.m. to give ourselves plenty of time. The rain was thick, and traffic was a little heavy. Other than one jerk in a semi who kept trying to speed and pass everyone and flipped me the bird, we had a pretty smooth trip. We made it in plenty of time and were relieved that parking in the garage was free.
Chris and I had been fretting that weekend and morning, wondering how the heck Simon was going to stay still for an MRI. He is a super active child, and an MRI usually requires absolute stillness for 45 minutes to an hour. We made sure that Simon skipped breakfast, just in case they ended up having to do sedation. The other thing on our minds was whether or not Simon had metal mesh in his head from the last surgery. One neurosurgeon told us that they used a triple layer of bone graft, bone paste, and mesh on Simon's forehead. He never told us what kind of mesh, though; and the surgery reports said nothing about it. The MRI tech reviewed the reports and assured us that it would be fine. The surgery was long enough ago that bone would have grown around the plate, eliminating the risk of the thing coming loose. Besides, the choice head metal is usually titanium, which is not affected by the magnetic action of an MRI. Whew!
When it came time to do the scan, we were informed that the test would take about 15 minutes. What?! It turned out that they were doing a short MRI without sedation. If they needed the longer one, then they would have sedated.
They gave gowns for Simon and me, and we changed and headed outside to a trailer. Simon got to "drive" the lift. We got inside and got settled, and then Simon decided that he needed to go to the bathroom. So, out we went. Once we got back, Simon started to freak out a little and cry. The tech assured him that crying was okay and that he would be fine. She put a halo sort of thing on his head, put in earplugs, and strapped about 5 inches of padding to his ears. His upper body was wrapped tightly, and everything was taped down. He wasn't budging any time soon. A mirror was on the halo so that Simon could see me at his feet and I could see his eyes.
The test started and was very loud, even through my ear plugs. I held onto his feet and kept smiling. He whimpered and coughed through the test but was fine. The tech's voice came through a speaker in between pictures, telling how long the next set would take and offering praise and reassurance for Simon.
Simon did great! After the test was over, she showed us the pictures and said that his brain was beautiful. Only one pic was blurry and had to be tossed; the other pictures were saved to the system for Dr. Tuite to view.
We went to lunch in the cafeteria and really enjoyed the gourmet pizza. (The food choices at the cafeteria were simply amazing!) Then, we headed to Dr. Tuite's office. At the appointment, we discussed Simon's history and why we were there. Dr. Tuite viewed the MRI images and then showed us. Simon's brain looked great, and there was plenty of space between his brain and the spinal cord. The MRI showed that Simon does not have chiari malformation! I cannot describe what a relief we felt at that point.
We left the office and went to have his blood drawn for surgery and to have a chest x-ray to make sure that he could get anesthesia with his cold and cough. Then, we headed to the Ronald McDonald House to check in.
At the House, our room was not quite ready, giving us plenty of time to get oriented. We headed back to the hospital to have a thorough meeting with a child life specialist, and then we were back to the House to move in. That process was made more interesting by Chris's severe foot arthritis flare-up, thanks to the tropical storm. Dinner was at a McDonald's down the road, where we got a nice discount from staying in the House. The rest of the night involved getting some rest. As we watched the news, we felt great thanks that we were off the roads. The Howard Frankland Bridge had been shut down that afternoon during high tide. The news footage showed water dashing up over the bridge and flooding one side out. The 6-foot tides were definitely setting some records!