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!

Tuesday, July 3, 2012

We are on the other side...again!

We are home from the hospital, and Simon is doing very well.


I fully intended to update this blog last week, but I could not remember my password. It is saved on the home desktop but not on hubby's laptop. So, I have some catching up to do. I have been in a collapsed state since arriving home and have just done the bare necessities each day. This evening, I feel that I am near the end of the tunnel of exhaustion and hope to do some updating tomorrow. After all, I need to write the details before I forget! For now, just know, that Simon is doing very well. This surgery has been, by far, the easiest of the three. We keep shaking our heads in wonder at this kid and his recovery. Surely, it isn't going this smoothly? It is! What a relief to all!

Saturday, June 23, 2012

How We Really Feel

People comment on how relaxed and laid back that Chris and I are when discussing Simon's surgery. For those who fully get the reality of what our baby has to endure again this week, they shake their heads in amazement when we mention that this surgery will be "minor" compared to the previous two. Well, if the tests show no pressure and the surgery ends up being a cover-up procedure, then, yes, this one is minor in comparison. It's all relative, though. This surgery is nowhere being as minor as, let's say, ear tube placement. (Oh, don't get me started about the moms who spend days freaking out about ear tube surgery. They really need to find a hobby.) The reality, no matter what they do, is that my baby will once again get slit from ear to ear, have his scalp peeled back, and have a bunch of strangers poking around his skull. We will sign paperwork that acknowledges that we are aware of death as being a possible complication. Blood will be waiting in case a transfusion is needed, and insurance codes have been pre-approved just in case they have to go further and take his skull apart again. Taking the skull out means that the only thing separating Simon's brain from open air will be the dura, the brain's covering.
Yes, we've been through this before, but that does not make it any less scary. We just now have advanced knowledge of what to expect during recovery. Add to the equation Simon's age, and this whole thing just got downright terrifying. How are we going to cope with a very aware 7-1/2-year-old through this? We will find out this week. So, when we talk about the surgery and seem to shrug it off, know that you are not seeing how we really feel. Me? I am fucking terrified. We just do not see a point to having everyone around us, including Simon, get too worked up. Simon needs for us to be calm and steadfast, his rocks in this storm. He has to trust that we are there and that everything will be okay. Inside, though, is a different story.

Thursday, June 21, 2012

Surgery Week Details

Monday, June 25:
MRI at 10:00 a.m.; Dr. Tuite visit at 1:00 p.m.
Tuesday, June 26:
ICP monitor at 7:30 or 8:30 a.m.
(This will be done by Dr. Tuite in the OR under sedation and will be left in for 24 hours.)
Wednesday, June 27:
Surgery at 9:00 a.m.
We will have a meeting with the surgeons that morning before the surgery to discuss what needs to be done based on all the tests plus the CT images.

Wednesday, June 20, 2012

Our Needs

I have received a couple of messages these past weeks of friends and family saying that they are there for us, whatever the need. Considering where we live and the time of year, I am doubtful of the honesty of those messages, but then I realize that I need to make the needs known before anyone can have the opportunity to help fill them. The needs I am about to list are actually a mix of needs we have due to my mom's death and due to Simon's surgery. This blog is supposed to be about the surgery, but the timing of my mother's death makes the events intertwined. So, what do we need?

1. We need a housesitter next week. Our neighbor has agreed to collect the mail and papers, but it would be a huge relief to have someone here to watch and maintain things. An added bonus would be to come home to a freshly mowed lawn.

2. My dad needs visitors. After my brothers and sister-in-law leave soon, he is going to be all alone in the house. Phone calls and physical visitors will go a long ways to helping him.

3. My dad needs ideas on how to do everything for 1, especially cooking.

4. We need meals. The weeks after Simon's surgery will be difficult as we will be exhausted and occupied with caring for Simon and driving to post-op visits.

5. We need (healthy) visitors. We will be going stir-crazy in the post-op weeks.

6. We need prayers. First, pray that Simon is quickly over the cold he has right now. Then, pray that the surgery and recovery go well. Also, pray that we find energy and strength, as the reserves are low.

7. We need gas cards. I have done a ton of driving between home, Brandon, Tampa, St. Petersburg, Winter Haven, and everything en route over the last few weeks. We have a ton of driving to look forward to in the upcoming weeks.

8. In a few weeks, we need a date night. Chris and I go out together maybe twice a year. We are long overdue and will need some time together once Simon is on the mend.

9. Chris needs some job leads.

10. We need encouragement.

Friday, June 15, 2012

Full Circle

My mother passed away on Sunday after a long battle with multiple illnesses, both physical and mental. I am assured that she is at peace and can watch over us with a clarity of mind and emotion that she has not experienced in a very long time, if ever. This week has been a time of intense reflection and remembrance both within myself and with family. Memories of times and conversations keep flashing about, much like an old film strip that has been cut into millions of pieces and then spliced in no particular order. So much of those pieces of film center around her love for us, her family.
During the last years of my mother's life, I found it necessary for both me and my child to remain separate from my mother. Due to the nature of her mental illness, I felt that it was my responsibility as a parent to protect my son and to protect myself. I do not regret having done so. I spent many years grieving the loss of the wonderful mother that I knew as a child, and I spent some time this week again grieving that loss. As I grieve, I do not feel guilt or regret. I do feel sadness and disappointment and longing. I so long to still have the mother that I once knew, the one who stayed so devoted to my bedside during my worst times. At the same time, I am incredibly thankful that the events of my growing up did lead me to get to know my father better. I am still finding out so much about his love for me as well. He no longer has the exuberance of my mother to hide behind and now shines forth brightly. I see him, and I see him in me.
This week, as we recalled memories, I was sharing more details of Simon's upcoming surgery with my father. Naturally, the conversation also brought in their experience with me when I had surgery for craniosynostosis at 2 months of age. I long to know more, and my dad wants to share. I shared that Simon's new neurosurgeon, Dr. Tuite, was actually mentored by my old neurosurgeon, Dr. Thompson. Dad shared how my mother kept in touch with Dr. Thompson over the years and how it was Dr. Thompson who literally saved my life. In 1977, doctors had the understanding that the pressure on my brain was going to kill me if left any longer. My father looks at the surgeon and the procedure as lifesavers for his firstborn. I shared the schedule at the hospital for the week, and my dad shared how he changed his schedule to be at the hospital that month. My mother was the one at my side with no real breaks, but my father was there too.
I knew that he worked in the building next door, but I had no idea that he made sure that the job lasted longer than it had to. My father was an elevator and escalator mechanic, and he had a job at Bayfront Medical Center during that time. So that he could stay in the area, he made sure that the equipment kept "breaking" and needing work. He alerted the building managers of what was happening so that they would not keep calling, and he was able to stay right there, literally on the roof over our heads. When his shift ended, he would join my mother by my side. Together, my parents held my hands and each other's hands.
Today, my father no longer has her hand to hold, and neither do I. As I go into my son's third surgery, I so wish that I had my mother for support. I am incredibly grateful for my father and what he can share, but I wish that I could have my mother to be with me, a mother. Since she cannot be here in person, I have to take comfort in my belief that she will be in that hospital that week anyhow. We will be at the same hospital 35 years later. She will be with us as we wait, and she will be with Simon as well. She did not know Simon while here on earth, but I know that she loved him. I also know that she loved me, and she will never be far away.

Thursday, June 7, 2012

Thinly Veiled

Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are. ~Arthur Golden, Memoirs of a Geisha

This journey with my son has been my adversity, uncovering the very depths of who I am. In my past, I prided myself on being a good person and following the rules and doing my best. When the preacher would talk about sins and forgiveness, I had an inflated ego, for I did none of those things needing forgiveness. My prayers were that I would have the strength to survive the difficult circumstances I faced at that time and that I would always commit myself to His will. Never were my prayers about forgiveness. After all, what had I done lately that needed forgiving?
I faced adversity, some of which those around me never knew and likely never will know. Close family and friends know, though. I did not realize at the time that I was committing one sort of sin: pridefulness. I carried pride because I was able to successfully accomplish so much with so little sleep and with much emotional pain. The pride stayed buried, so much that I did not even recognize it as being there.
Today, I know the ugly truth: it has been there all along. Pride has been there; and apparently so have greed, jealousy, and scorn. They have been so buried that I did not even know I was capable of them until I started on this journey. I make an effort to keep them hidden from view, as I am ashamed that they even exist.
How do I see these sins? I continue to have pride, but now it translates into a pride about how good I am at managing things. This pride is not the good sort that you feel when you have a successful child. No, this is the ugly one that causes me to look with scorn at someone who is not managing so well.
The greed and jealousy are twins. I see others who have it better. Better, to me, is in being able to have multiple, healthy children. Better, to me, is being able to afford to raise multiple, healthy children. Better, to me, is a household where the family gets home at a decent time every night and the parents are not sick with exhaustion. I see these people, and I feel jealous pangs of wanting what they have. I see these people, and I feel the greed of wanting more. Then, starts the guilt.
Immediately, I recognize that these feelings need to be kept under control. I feel guilty for having them in the first place, and then I have an internal war with myself about what it means to be human and have these emotions in the first place. Should I push them down? Is that unhealthy? Or am I sinning? Or is this natural and the sin comes if I do not act on them properly? It is horrible and leaves me feeling wrung out.
Then, finally, comes the scorn. I feel scorn and contempt towards God for us being in this situation in the first place. I mean, I am okay with having the burden to care for the child, but why can't God ensure that we can financially take care of it all? Why are we given something without the proper provisions? My God takes care of all my needs? That feels like bull honky. I guess, if you count credit cards with high limits as taking care of our needs, then we are covered.
I feel scorn and contempt towards certain people for not realizing how good they really have it. Their complaints are impossible to stomach, and I immediately do a mental retort of "Well, if you were in my shoes, you wouldn't be complaining about that."
Then, in swings the guilt again. I am not in their shoes, and they may very well have it way worse. We do not know everything going on with every person we encounter, and it is not right to issue judgment.
I know the truth about how I should be, and the guilt comes because the truth shouts in my brain after my knee-jerk emotions. It is a war that stems from my adversity. I am seeing myself as I really am.

Tuesday, June 5, 2012

Nesting Instinct

I have discovered that nesting is not just for soon-to-be mommies. It is also for those of us seasoned mommies who know that our kiddo is about to go through a long, traumatic ordeal. Knowing that the summer is going to kick off with at least a week in the hospital followed by 6 weeks of recovery time, I feel an insane urge to get it all done. Just like with nesting, I feel like a deadline looms and that everything will fall apart if I do not finish. Just like with nesting, my self-imposed tasks do not all make sense, either.
When I was 9 months pregnant, I felt a need to start tearing apart the garage and mopping it. In my mind, I knew it was insane. What the heck does the garage have to do with the baby? It was not like he was going to be sleeping or playing in there! Still, I was up late, exhausting myself with moving things around and mopping. I didn't finish before the baby was born, and it took about 4 months after for me to find the time and strength to at least move things to the side.
Now, my task has to do with the yard. I feel this need to get it totally cleaned up and beautified. I have moved the bird bath and planted flowers, and I have plans for more flowers and rocks. I tried to mow yesterday, but the machine conked out again and is beyond my limited ability to fix. I have this insane urge to go get a professional yard monster, but I will definitely refrain from that one. Still, I am drooling over the features, and I feel extremely irritated at the partially shorn front lawn. I hate leaving tasks undone anyhow, but this is really bothering me. It's too bad that I can't do more today. My night class looms, and then that will leave me useless for most of the day tomorrow from exhaustion. What was I thinking in signing up to work the summer term? Oh, yeah, we need to pay bills. Darn it! It's standing in the way of my nesting...err, therapy?

Monday, June 4, 2012

Personal Answers?

It is probably too much to hope for this, but I am thinking that I might be able to get some more pieces to the puzzle that is my head history. Our new neurosurgeon, Dr. Tuite, is at the hospital where I had my cranio surgery in 1977. I asked him if he knew Dr. Thompson, and it turns out that Dr. Thompson was his mentor! Dr. Thompson has since passed away, but maybe Dr. Tuite can enlighten me on the procedure done to my head. I crave more information to understand myself a little better and to compare with my son's experience. I won't get my hopes too high, but it is still something I am looking forward to on June 25.

Feelin' Groovy

Today, I am feeling optimistic, hopeful, and eager. Maybe this has to do with having a good weekend with my boys? I caught up on missed sleep Friday and Saturday. Then, we went out most of the day yesterday and had fun together. We went to a place where we could ride go-carts, feed alligators, and play arcade games at a huge markdown thanks to a Google offer. Then, I had a coupon for Logan's Roadhouse so that I could finally have the steak dinner I had been hoping for since Mother's Day and then my birthday. We hit Barnes and Noble Books so that I could spend some gift cards, and we checked Target for a bicycle that I have saved for. The bike was not in stock, but I should be able to get it soon. We were able to go out for a while and just forget about things, and I finally had a day where I did not keep reminding myself to treasure it because of the "what if's" that loom with surgery.
So, today, I am rested and ready to tackle the various household things that are staring me in the face. I keep thinking about how this is the last week of school for my boys, and then I think about how I just have 2 more weeks of the summer term after this week. Then, I think about the surgery the week after that, and I am seeing it as something to look forward to getting over with. Maybe, after this round, we will be done with the surgeries. We will get through this and be able to move on with things, achieving a sense of normalcy. I really have that hope this time around.

Wednesday, May 30, 2012

Dates

Yesterday, I realized that I had not updated the blog with our schedule.

Monday, June 25:
Drive over to St. Petersburg for a 10:00 a.m. MRI followed by a 1:30 p.m. visit with Dr. Tuite

Tuesday, June 26:
Placement of a Camino Intracranial Pressure Monitor

Wednesday, June 27:
Surgery

Tuesday, May 29, 2012

Paperwork and Feelings

I can't believe that surgery is less than a month away!  I vacillate between calm and worry from day to day, and my best coping mechanism is to put my full focus on what needs to be done each day as a wife, mom, and teacher.
For the surgery preparations, I called the Ronald McDonald House today and got us on the waiting list to check in on June 25.  I just have to call again that day to see where we are supposed to go.  I guess that they have multiple houses by All Children's?  I do hope that we are somewhere within walking distance like we were with Arnold Palmer.  I also sent the directed blood donation paperwork to Dr. Ricalde today.  My blanks are filled out, complete with the names of 3 donors.  (Thank you, Michele, Amanda, and Valerie!)  Now, the surgeon has to fill in details and fax it to the appropriate office.
With each little step, I feel both relief and dread.  We are that much closer to getting it over with, but we are also that much closer to being there.  This time around, I don't feel like our lives are going to drastically change for the better when the surgery is done.  For the last surgeries, I knew that Simon needed relief from the pressure on his brain; and I looked forward to seeing my son recuperate and move forward.  I can't describe how it feels to see your little baby withering away and going backwards in development or to deal with your pre-schooler not communicating well and not sleeping well.  I knew that he needed the procedures done to make those bad things stop happening, even somewhat if not fully.
Once the surgeries were over and he had time to heal, Simon bounced back and caught up at lightning speed, bringing us much happiness and hope.  He had nearly full recoveries.  This time, the biggest change will be that I will not see that pulsing on his forehead and worry that he is going to get hit in the head somewhere.  I also will not have to wonder what is going on in his skull, as the MRI and ICP monitor should give us some clear answers.  So, good changes will happen, but my mind keeps questioning whether we absolutely have to do this or not.  My mind has actually questioned every time, even though it was illogical.  Maybe that is part of my defense system as a protective mommy?
I worry that he will somehow end up backwards, after making so many gains with his speech and academics.  I worry that he will come out with a different personality and not the happy, sweet kid who is absolutely my world.  He will always be my world, no matter what.  Still, I can hope that he is my same son.  Again, these are "normal" worries with this sort of surgery, but the knowledge that they are normal does not stop me from having them.  I just have to remind myself that, no matter what happens, we are doing the best that we can with this situation.  I have to pray that God will guide the surgeon hands and hold our hands.  I have to pray that Simon will come roaring back like the champ that he is.

Friday, May 11, 2012

Slight change in surgery date?

The surgery date might change to June 27.  They are thinking about doing some monitoring for intracranial pressure and may need the extra day in between the MRI and surgery to do so.  I will keep everyone posted.  It does not affect us, the patient and parents, but I know that some people are trying to arrange work schedules around it. 

Tuesday, May 1, 2012

Blood Donation Time = More Worries

The craniofacial surgeon sent the paperwork for the blood donations today.  I may have a Master's degree, but this stuff is confusing me.  Can I chalk it up to being tired right now?  One thing that leapt out at me, though, is that they do not advise using the same donor twice.  What do we do, then?  We have had 3 people do directed donations for both surgeries.  On the second surgery, two of them donated, and both units got used.  On the first surgery, three of them donated, and two units got used.  We know whose one of them was, and we are not sure about the other.  Who do we call?  What exactly is the risk of using, possibly, the same donor three times?  How am I supposed to sleep at night with these sorts of questions bouncing around in my head!?

Friday, April 27, 2012

It's all in the details.

I know that it is early, but I am glad that certain details are coming together.  We are scheduled now to check in at 10:00 a.m. on June 25 for the MRI at All Children's.  After the test, we can go downstairs to grab lunch in the cafeteria before going to meet Dr. Tuite at 1:30 p.m. on the same floor as the MRI.  The surgery is scheduled for June 26, but I do not have the exact time.  Letters should be arriving in the mail soon.
I called the Ronald McDonald House, and we have to call 30 days prior to get on a wait list.  The morning that we arrive, we will need to call to see which house has a room available.
I have been hearing about other parents who have used Dr. Tuite, and they seem to be happy.  Rumors are that he is one of the best.  It is still a little unsettling that we will first meet the man the day before he will do surgery, but Dr. Ricalde will be on the team and knows Simon well enough.

Friday, April 20, 2012

We have dates!

Okay, June 25 (Monday) and June 26 (Tuesday) will be our dates.  The hospital is scheduled for June 26, and the MRI and neurosurgeon visit are still being arranged for June 25.  I imagine that we will head home June 28 (Thursday) or June 29 (Friday).  I will be getting information about the Ronald McDonald House when I receive the paperwork with the dates officially in writing.  Simon will have 3 weeks before the surgery to be kept away from germ-infested kids and 5-1/2 solid weeks at home after the surgery before returning to karate daycare and then school. 
I have a couple of dominant emotions now.  For one, I feel like we are "cheating" on Dr. Gegg (one of the neurosurgeons).  The last time we were at Arnold Palmer to see Simon's audiologist, we ran into Dr. Gegg in the atrium.  He stared at Simon for a while and asked how he was doing.  I did not mention that we were going ahead with surgery plans without him.  It is not like we don't like him or anything; far from it!  The team split up, and it just makes logical sense to go with the familiar surgeon who will be more involved this time around.
Second, I am amazed at how good I have been doing at pushing it all inside, but I do find myself choked up when I have to explain it to someone.  Not very many people around us know what is happening this summer, and I am not sure how many will know.  I feel responsible for what others feel when I tell them, and I just do not have the energy to hold others up right now.

Tuesday, April 10, 2012

Still haven't heard...

I have not heard back since saying that we can't do surgery at the end of April. I wonder if that is a good thing or a bad thing? Part of me wishes that our lives were flexible enough to get this done and over with, but another part of me does not. I do have to say that getting it all together was way easier when he was an infant. I was home on maternity leave and had so much more time to make phone calls and fill out applications and so forth. Now, I have to squeeze everything into minutes between meetings or classes or while on the road. So, lots of important things are not getting done. It will all come together, I am sure; but I will not have much time to nurse my baby through recovery and then catch up on rest myself before school cranks back up. Is it bad that I am already dreaming about taking lots of sick days in the fall?

Friday, April 6, 2012

I wanted to be a doctor when I grew up.

As a kid, I had an intense fascination with anatomy and the idea of being a doctor. I had a medical dictionary and would flip through it, and I dressed up in a lab coat and stethoscope on career day. More specifically, I dreamed of being a surgeon. As time went on and I gained academic experience, I started to get a better idea of what I enjoyed studying, and science was just not it for me. I grew up in a private school with science teachers who did not even have science degrees or a chemistry lab, which put me at a great disadvantage. I graduated with a hatred of chemistry and decided to avoid it all possible costs. So, I figured that I would get a Ph.D. in math or English, granting me the doctor title anyhow and landing me in a role as a professor. I picked math, because the student papers would be more tolerable when it came time for grading. Plus, the science credit could be covered with physics, which is basically applied math. I greatly enjoyed my math studies until graduate school, and then I decided to stop with the Master's degree after barely getting together the drive to finish the two years. (The graduate experience is for a whole 'nother blog.) Little did I know that my fascination with the medical field would get rekindled after the birth of my child, two years after graduation.
The cranio journey has been an incredible learning experience. I know so many things about the human body that I would have never bothered to learn before, and I am so thankful for the experience of learning. In this day of information, I have been able to put together an extensive file of everything done to my son, so that he may know when he grows up. Admittedly, I jump at the chance of gathering surgical reports, operative pictures, and so forth. Then, I read them over and over and try to learn the language of the professionals. I relish being an informed parent at the appointments, and I am extremely happy that the doctors are willing to discuss things with me in a thorough enough manner. I am the student; they are the teachers.
Just today, I picked up the surgeon notes from both operations and began to read them before we even left the hospital. I need to do some dictionary work before I can fully picture what they are saying, but I already have an awe and respect for just how skilled these scientists/artisans are. I am also incredibly thankful for their skill, as their knowledge and wisdom and steady hands carried them through some intense hours with my son. These people know my son intimately, as no other can know him. I am not sure what the word is for someone who has seen your brain and ensured its health and safety, but how much more intimate can you get? His life and future were in their hands, and they ensured his well-being.
I am eternally grateful for that, and I now know that I never could stand in their shoes. First, a reality check as an adult helped me to realize that being blind in one eye just would not "cut it" in such a profession. (Yes, the pun was intended. haha ) Then, I have enough emotional maturity to realize that I do not have what it takes to handle such pressure. I leave it to the professionals and just dare to dream of someday contributing to the bank of knowledge in some way. I have contemplated a return to school to study biomathematics and make my mark in research, but we shall see. For now, I have to stay where I am so that I can have the time required to see my son through these difficult years. Some day, though, I have that dream.

Scatterbrain

We had an appointment with the audiologist at 9 a.m. today but had to arrive at 8:30 a.m. for them to update records and such. They recently moved to a new building and tons of construction is being done in the area, meaning we needed to plan on early arrival anyhow. I awoke around 3:oo a.m. and never fully went back to sleep before getting up just after 5 a.m. and getting ready. I thought everything was going smoothly when we got out the door on time and faced normal traffic conditions on the 1.5 hour drive up there. We found the place after a little driving and a phone call, got parked, walked in, and started to check in. I had to go back outside to put a parking voucher in our windshield, and that is when I noticed something totally vital to this appointment. Simon was not wearing his hearing aids!!! The appointment today was for a hearing aid check, and he was missing the very thing needed. I could not believe that I had made this sort of mistake! Then again, I could believe it with the week I have been having. They were very kind and scheduled a new appointment, and I left with the conviction that I will not make that mistake again.
The drive was not for naught, though. We walked over to Arnold Palmer Hospital to pick up the surgeon reports. At first, I was told that the office was closed today and that it would be $1 per page. (The lady who usually takes care of this was out.) The lady who was there had me fill out a request and logged in so that I could find out what exactly was available for request. We waited a few minutes, and she handed me the reports from the two cranio surgeries. They were free of charge! I don't think she realizes just how much better she made my day at that point.
Simon wanted to go play in the castle and pirate ship that the hospital has in the main atrium area, so we spent some time there. While he played, I read the reports. After some play time, we dropped off pop tabs at the Ronald McDonald House and chatted with them some. We stop in often enough that they are starting to recognize us. We then went to Target for some needed items and ate at McDonald's, which has seats around a really nice fish aquarium. All in all, Simon had a good day.
I, on the other hand, am having a hard time getting used to my mind faltering so often. I went through this when I was pregnant, but I am not pregnant now. With Simon's two previous surgeries and other events involving extreme stress, I have not felt like this. I suffer from exhaustion that weakens me to the core, and I would lose my head if it were not attached. All of this just needs to get done, and we need to be on the other side with flying colors. I want to know what it feels like to have the "normal" worries of a parent, which I doubt are so debilitating.

Thursday, April 5, 2012

No Set Date

The neurosurgery office thought we might be able to do the surgery in mid-June, but apparently the craniofacial office is saying May. I had to write and say that we absolutely cannot do it that early. The first week of May is my final exam and final grade week; the rest of May I am in summer term. Summer term means, if I don't work, then I don't get paid. Hubby only has 2 sick days left, and Simon simply cannot end up missing the remainder of the school year. Things are hard enough financially without that sort of wrench thrown in. So, I am waiting to hear back. I am hoping that the date works out as needed so that we don't have to think about missing work and Simon won't miss school. These "little" things really add to the stress of it all. My digestive system has reached the twisted and feels-like-a-long-running-stomach-virus stage, and I was pulled over this week for erratic driving when I was not under the influence. I am just so stressed that my face is broken out like a teenager's and my eyesight keeps fading out. (Seriously, the eyesight thing has me worried. I am already legally blind in my right eye due to my own cranio, but now my vision has been going black in my left eye. It seems like it is more my brain and not so much my eye.)

Friday, March 30, 2012

MRI and Surgery Dates + Chiari Malformation?

The dates are not official yet, but we are looking at the following:

Monday, June 25: MRI and office visit with Dr. Tuite in St. Petersburg;
Tuesday, June 26: Surgery with Dr. Tuite and Dr. Ricalde at All Children's Hospital in St. Petersburg.

I think that we will be able to stay at a Ronald McDonald House there, as we will end up being in St. Petersburg for most of the week.

The MRI is being done to check for chiari malformation. If that shows up, then treatment for it may be needed. I probably won't do a whole lot of reading on chiari unless the MRI shows it, as I understand that the way it presents itself can vary wildly and will just cause me to worry.

Wednesday, March 28, 2012

An Unexpected Blessing

My mind was consumed yesterday with figuring out how to manage the back-and-forth trips to St. Petersburg in the coming weeks, and I came home to an unexpected blessing. A "Thinking of You" card had come in the mail from a family member, and inside the card I saw money orders for decent amounts. I was in a bit of shock, and I think that my jaw is still on my kitchen floor. When hubby came home, he asked if I saw the card; and he indicated that he, too, needed to find his jaw somewhere on the kitchen floor. We are very grateful for the gift, and I know now how we will manage the trips to St. Petersburg. Hotel accommodations, gas, mileage, and meals will no longer be a source of stress. Thank you so very much!

Monday, March 26, 2012

ICP? Other kinds of pressure!

We are no strangers to ICP. To start, Simon obviously had it before his first surgery at 6 months of age. How else would you explain everything going on? He had a voracious appetite but fell off the charts for weight. He had to be held constantly. He would not sleep on his back. He was diagnosed with hypotonia (low muscle tone) and significant developmental delays. I felt like I watched my baby wither away before my eyes in the days leading up to the surgery. After the surgery and recovery, he started physical and occupational therapy; and we ramped up his diet. Baby boy just took off from there!
Then, he obviously had it before his second surgery at 4-1/2 years of age. His skull bones opened up and became like swiss cheese. His speech and hearing were affected. His sleep was horrible with sleep walking, thrashing, and moaning all night every night. His behavioral quirks really had us thinking that he was on the autism spectrum. Then, after the surgery, everything improved. He does wear hearing aids for sensorineural loss, and he still receives speech therapy twice a week. His sleep is not perfect. Still, everything got immensely better.
So, we have been through it. He never had the vomiting or the optic nerve pressure or the inconsolable crying or other symptoms they had us monitor, but he definitely suffered. You would have never known it, though. He is such a happy kid!
Knowing all this, maybe there is some clarity as to why I felt like I got punched in the gut when the craniofacial surgeon mentioned getting an MRI to check for ICP and requested axial slices of the brain from the CT scan in order to check the size of the ventricles. We have been through it enough times, and this time around the only thing observed is the growing soft spots. He seems to be doing great otherwise. Or is he? Am I missing something? Could my baby be suffering in some way that I do not see yet? My mind is whirling with not-so-good possibilities, and I don't really want to entertain any of them. For now, I just want to get through the surgery. But, are they doing the right thing? Do we just need to cover holes, or is it possible that a reconstruction is needed again? There are too many unanswered questions!
In the meantime, I feel so sad. I look at him, and I try to soak in everything. Even though he has gone through all of this like a champ for 7-1/2 years, I still want to take it all in just in case. The reality, even if we do not reveal it in conversation, is that our baby has to go through something so serious, that papers are signed agreeing not to blame the surgeons in the case of death. I will never get used to that. I will downplay this next procedure as a relatively minor one compared to the last, but note the word relatively. I will talk about it in cool, clinical tones so that I can avoid choking up. The last thing that I have the time or energy to do right now is break down. Then again, I may reach a point where I am by myself and can risk doing so. I won't do it in front of anyone, though. Nothing they can say or do will bring comfort, and I do not want to add to their stress. Still, people need to know that most of what is going on day-to-day around me seems laughably trivial. Facing your child's mortality gives you that sort of skewed perspective.

Sunday, March 25, 2012

CT Scan Images

Here are the latest CT scan images of Simon's skull. If you get squeamish with these things, I want to warn you to move on to a different post or a different site. It is just a computer image of the bone, but some people get the heebie-jeebies when looking at this sort of stuff.






Don't say that I didn't warn you!






Here, you can see the infamous soft spot on the right side. Every time I look at him now, I see this thing pulsating. Immediately, I feel sadness and worry. What if he gets hit there? Why in the hell do we have to put him through another surgery?!



From the front view, you can see that he has soft spots on both sides. The one on the left is smaller, but I can see it pulsate too.



Here's the one on the left in all its glory.



You can see right through to the other side! Well, not really, since he has skin and brain there, but the picture reinforces what is going on.



There are some small holes on top, but the neurosurgeon is not too worried about those. There used to be a plateau that ran across Simon's head there, due to the shape of the bone at the last CVR (Cranial Vault Remodeling). They had taken off the skull cap and flipped it back around so that it was oriented the same way that it had been before his first surgery. This gave his brain some room at front where it was previously getting pinched, but the bone did not fit together perfectly. Over time, that has smoothed out. It is not perfect, but it seems to get nicer every day.



So, this is what they have to fill. They hope to take bones off the sides of the skull, above the ear. That is where the skull is usually thickest. If they do a split bone graft, then the bone pieces will be cut like an Oreo cookie and fitted over the holes. Everything will be held together by absorbable plates and screws.




We don't know if he will need a blood transfusion this time around, but I plan to be prepared anyhow. The surgery will not be as invasive as past surgeries, but cutting and peeling back the scalp can be a bloody affair. Plus, you just never know what they will run into once inside.

The Craniofacial Surgeon Report

For this latest stage in the cranio journey, we had visited with one of Simon's original neurosurgeons to bring up the concerns, and we ended up seeing the craniofacial surgeon that is now on that team. Both surgeons want to cover the holes in Simon's head, but they had differing opinions on what materials to use. The craniofacial surgeon talked about using a bone material consisting of bone chips, and the neurosurgeon talked about using a bone graft. Both talked about doing it this summer.

Last Friday, we visited Simon's original craniofacial surgeon, and she concurred with the neurosurgeon on doing a bone graft this summer. In Simon's case, it will likely be best to go in expecting to do a bone graft but also being prepared to use titanium mesh. For the last surgery, not enough bone could be harvested for a full cover, and nothing guarantees that enough bone will be available this time around either. The titanium mesh will cover and protect, whether or not there is enough bone.

I asked about why we would do this versus bone material or PEEK implants. If Simon's holes were bigger, we would have to consider implants, as the titanium would bow in the middle. Since the holes are smaller, we can use the titanium, which has been in use for many years and has an excellent track record. Plus, the titanium is tough and durable to protect his brain. The implants have risks into adulthood, including the possibility of coming loose. The titanium doesn't carry the same risks. We will avoid the bone material/bone paste, because it did not stick when used in the last surgery.

Another question I asked is why should we bother to do this at all? Why not just continue to wait and see? More than likely, the holes will continue to grow, and the opening on the right is a safety issue. This summer is a good time to get it done. He needs a good 6 weeks to fully recover and stay away from the germ-infested kids at school, and he needs to have that noggin in good shape as he gets old enough to do more physical activities.

During the visit, the CT scan disk would not cooperate in the office computer. So, I figured it out at home a few days later and sent the pictures to the craniofacial surgeon. Her response, although not entirely unexpected, still felt like a punch in the gut. From those pictures, she could see that the holes have definitely gotten bigger. She sees two things that need to happen: 1. The holes need to be covered; 2. We need to find out why they are getting bigger like that. She requested that I send some axial slices from the scan so that she can look at the size of the ventricles, and she is talking to a neurosurgeon about possibly ordering an MRI to rule out ICP (intracranial pressure). At the moment, all kinds of things are running through my head, and none of them are good. I will save that for a later post.

The neurosurgeon is Dr. Tuite out at All Children's Hospital in St. Petersburg. This time around, we may end up there so that we can have the same craniofacial surgeon along with a personable neurosurgeon. For those of you who follow the story of Jorge Posada's son, Dr. Tuite was on the team that operated on Jorge Luis at All Children's when they were here in Florida. I hate the idea of having to go to a different city and have a new neurosurgeon, but circumstances have changed, that require us to make decisions about where to go and which part of the original team to use. I am confident that God will guide us to the best place, as He always does. Simon seems to have some extra spiritual protection in everything that he endures.

Friday, March 9, 2012

Time to start posting again...

I was able to take a good hiatus from posting here, as we had paid off the bills from the second cranio surgery and had purchased the hearing aids. Life was humming along with speech therapy at school, leaving us little need to think about that service. The only real upheavals involved routine checks with the ENT, audiologist, and ophthalmologist. I started noticing openings a while back, though. A CT scan and visits with the surgeons in Orlando confirmed what I was noticing and fearing. Then, a visit to the surgeon in Tampa, today, confirmed that fear. Here is what I put on Facebook.
Simon does need the openings near his temples to be covered. The plan is to go in, harvest bone, and do a split bone graft. If not enough bone can be harvested, then a titanium mesh with bone may be used. If we leave it alone, the openings, especially the right one, will likely get bigger. Also, it is a safety concern. If we have the same craniofacial surgeon, then we will probably end up at All Children's Hospital in St. Petersburg. We should be able to get a room in the Ronald McDonald House so as to be there a day or two early for pre-op testing. He really needs six weeks out of school to get past the danger zone of contracting any post-op infection. I am taking the second summer term off, and Chris and Simon will already be on break. So, that works out okay. The neurosurgeon does the bone harvest, and the craniofacial surgeon puts it all together. So, I am thinking that we will be taking the trip to St. Petersburg. That will be eerie. It will be 35 years since I had my cranio surgery at that same hospital!

Tuesday, January 3, 2012

Third Cranio Surgery



An update has been a long time coming! Simon is now a happy first grader! He has been growing very quickly, and he is doing well in school. He attends speech therapy twice a week, and he has adapted nicely to wearing hearing aids in both ears. Unfortunately, with all this good news, there's some bad news too. It looks like he will be having a third surgery to once again cover up some defects.
For this surgery, all they need to do is cover up holes, making the procedure much less invasive than the previous two. The talk so far is of taking some skull bone from above his ears and splitting it like an Oreo cookie in order to do a bone graft. The bone pieces will be held in place by plates and screws that his body will eventually absorb. Supposedly, he will not need a blood transfusion, but I have heard that one before. For the last surgery they initially said that, and they ended up using all the direct donation blood due to excessive bleeding from scarred tissue. I think that I will send out the call again for our O+ peeps.
The cost for the surgery this time around will be double the previous time. Yes, you did read that right. My out-of-pocket maximum the last time was $5,000 total. Now, it is $10,000 per insured patient. I am already in a panic about this but keep reminding myself that I am pretty good at ignoring nasty letters as I send in $20 a month on these sorts of bills. It is not like we own anything outright for them to sue us and take. As if this sort of thing were not stressful enough, right!?
Speaking of stress, I honestly feel like I am on the verge of falling apart this time. It seems like it would be so much easier to just let it go and see what happens over time, but then I see the spots on his forehead pulsing. It would not be fair to leave his brain so vulnerable, thus limiting his activities. We have to take care of this for his future. How do we know if we are going about it the right way, though? Remember, this will be the second attempt at a fill. Will the bone graft take, or will we be facing the OR again in 2 more years?! I sure do wish that we could either have a miracle occur in the next 3 months or find a crystal ball to help us make the best decision.
Being a parent is hard enough without these sorts of decisions to make! We want what is best for our child, but how do we know what is best?