Thursday, October 8, 2009

Surgery Costs

Okay, I need to organize the surgery bills. Here is what I have so far, and I have no idea how we are going to pay for this.

Hospital Stay: $750 of the $102,365
Anesthesia: $414.80 of the $2,822
PICU Doctor: $586.87 of the $4,132
Neurosurgeon: $1,122.82 of the $33,269
Craniofacial Surgeon: $3,371.43 of the $31,000

Grand Total: $6,245.92 out of $173,588

We have an out-of-pocket maximum of $5,000, but I have no idea what that means. Maybe we will owe less to some of the bills; I need to call the insurance company soon to get more information.

We also owe $150 for the first hearing test and likely another $150 for the second one.
The hearing aids will be around $2,200 out of our pockets.

Friday, September 25, 2009

Good Appointment


The appointment on Wednesday, September 2, went well with the craniofacial surgeon. She said, "Momma, I think that you can quit worrying for now." Of course, that is way easier said than done. I have no idea if this is the last time we have to go through this or not. I will try to relax, though.
This past Wednesday (September 25), Si saw one of his neurosurgeons along with a large entourage of people who are from Arnold Palmer Hospital or are doing fellowships. They were a very friendly bunch and found it hilarious when I had to pull Simon out from under the chair by his feet. Dr. P did manage to extract the kiddo and tickle him into submission. Dr. P likes the shape of his noggin and wants us to return after the holidays to make sure the plates and screws are doing their thing.
Next Friday, Si has his hearing aid evaluation, and they might do the molds the same day. My insurance company does not cover the aids, but I can get a discount through a certain company. I am checking into the Lions Club. Our income is too high for their need-based program, but I am awaiting news on whether we can get refurbished aids. On October 30, he has an assessment through the Child Find program. They will look at everything, including whether or not he needs physical and occupational therapy. I know that he is good on everything but speech.
Dr. P said that lots of kids come to the cranio clinics with hearing aids. One of the fellows told me that it is common, especially with syndromic cranio. There is quite a bit of pressure put on nerves due to skull shape, which can cause some of the damage. The hearing loss will not improve, but it may be stable. I left feeling disappointed. I am still adjusting to this whole idea of hearing aids and batteries and IEPs and FM systems and lack of insurance coverage. Actually, I am feeling pretty sick about it.
I am considering again the genetic testing. The neuro thinks that it is good as the geneticist can help us to put it all together. Answers would be so nice, but I am scared of the possible blacklisting by health insurance companies. I wish that things were more cut and dry.

Tuesday, September 1, 2009

Appointment this Wednesday

Simon has been doing very well. Now that the swelling has gone down, ridges have appeared. I took pictures of the one on top of his head as it is the most noticeable, and I e-mailed them to the craniofacial surgeon. She thinks that it is likely the way the bone is shaped as they did take the existing bone above his forehead, cut it out, rotate it, and put it back on. She hopes that his head will smooth out as his skull grows. I hope so, too. I know that we should expect lumps and bumps after these surgeries, but this surgery was supposed to give his brain more room and smooth out his head with the bone grafts and bone paste. His forehead looks great, free of the dents and pulsing soft spot. We will see the craniofacial surgeon tomorrow for an appointment, and hopefully one of his neurosurgeons will be there too.
Next month, Simon will have an assessment through Child Find to evaluate everything. I have the appointment primarily for his speech, and I still have to make an appointment with the audiologist to discuss hearing aids. With school back in session, these things are getting harder to do.

Wednesday, July 29, 2009

Only...Already...2 Weeks?

















We look at Simon and forget that his surgery was only 2 weeks ago as of today. At the same time, we cannot believe we are already 2 weeks into being on the other side...again. He is doing great. His stamina has increased quite a bit, but he still runs a low fever in the evenings if he does too much during the day. He wants to go to the park and play on the slides or go out back and play in his sandbox. It is tough to keep telling him that he can't. We hope that the surgeons give him the clearance to return to life as usual when we go on Monday. In the meantime, he is back to himself when playing in the house, as you can see by the pics. My happy little boy is still here!






Tuesday, July 21, 2009

1 Week Later...


One week ago at this time, we were enjoying a lovely meal cooked by volunteers at the Ronald McDonald House. It was the beginning of one of the more difficult weeks of our lives thus far, and we are amazed today at how far Simon has already come. He is getting back to his playful self, but he still takes it easy. I think that too much action makes him a little woozy. Truthfully, we are very thankful that he has not returned to his old self yet. He has at least a week to go with the stitches in his head. On August 3, we have the follow-up appointment in Orlando at the neurosurgeon's office and should find out if he is clear to return to life as usual. In the meantime, Simon does not seem to have a full awareness of what has happened. He is proud of his new haircut and keeps stroking the top of his head. We got him a fish as a get-well present. It is a red betta in a 3-gallon tank, now named Mr. Red Fish. I am not sure if Simon has grasped the significance of the gift, but we enjoy watching him enjoy the fish. In about a month, we plan to have a party in celebration of him making it through this ordeal like a champ. For now, I am enjoying the time at home with him and not really wanting to go out much. A week ago, I was looking at my baby and wondering if our time with him could possibly be too short. Now, I am looking at him and thankful that we are still all together. All of these moments are to be treasured.

Sunday, July 19, 2009

Back to Life

It is good to be home. We are slowly returning to normalcy or whatever normal is when your kid has train tracks across his head. The alternating Tylenol and Motrin seems to be keeping him quieter and calmer, which is a very good thing. He is also getting used to me smearing the incision with the iodine and ointment 3 times a day. The swelling has gone down since even yesterday, and he is enjoying his toys and movies. We have not caught up on the missed sleep yet, but we are working on it.

Saturday, July 18, 2009

We are home!


Simon was discharged from the PICU this morning. His eyes are wide open, and the swelling is going way down. He is so happy to be home with his trains and videos. Now we have to survive 2 weeks with an active 4-year-old who has stitches in his scalp from ear to ear.

Friday, July 17, 2009

Open Eyes


His eyes opened this afternoon! I cannot express how much joy I felt when I saw that. There is a light at the end of this tunnel. Tonight, he drank about 2/3 of an instant breakfast shake. Hopefully his appetite will take off tomorrow.

Still in the PICU


We are still hanging out in the PICU with orders to move to the Special Care floor if a room opens. Yesterday, the dripping blood was finally stemmed when another surgeon came by to glue a little hole together with Dermabond. His eyes completely swelled shut last night, and he freaked. Today, he is adjusting to the blind life. His last dose of morphine was at 6:15 a.m. yesterday, and he has been on Tylenol since then. He went most of the day yesterday without medicine buthas been needing it regularly since last night. He acts like his legs and head are itching or tingling. He has been refusing to eat or drink, meaning the IV pole is an accessory that follows him around, usually to the potty. They did take him off the IV today to see if he will start to eat and drink. Before the current nap, he ate a cup of apple sauce and some M&M's. After we stopped doing morphine yesterday morning, he did not seem to need much pain medication. He did start needing Tylenol on a regular basis as of last night; it helps him to relax and sleep.

Wednesday, July 15, 2009

Surgery is over, and we have not seen him yet.

It is 7:15 p.m., and we have not seen him yet. :( The surgery was over around 4:30 p.m. He did very well, but it was a very involved surgery. They ended up needing the 2 units of blood due to all the scarred tissue. His noggin is much bigger as his brain definitely needed the room. They used his bone to reconstruct and then the bone paste to fill in the holes. We are exhausted and hope that we don't get more of a runaround when we walk over at 7:30 p.m. to finally see him.

In Surgery

Well, we reported at 8:30 a.m. The pre-op vitals went well, but he got pretty irritated after the goofy juice. They wanted him to stay seated, and he wanted nothing doing. After 10 - 15 minutes of pinning him down, the juice finally kicked in. Man, it was like a drunk switch went on and was pretty funny. The head nurse carried him out with a promise to see some cool balloons, and Simon went pretty willingly. That was around 10:30 a.m. Since then, we have gotten one phone call saying that surgery was in progress and everything was fine. That was at 12:18 p.m. It is now 2:34 p.m., and we have not gotten more updates. The neurosurgeon figured that the surgery would last about 3 hours, but we assumed a window of 3 to 5 hours.
They have bone paste on hand to fill in the holes. I guess the neurosurgeon has his concerns about there being enough bone for the split bone graft. Honestly, that upsets me quite a bit. I have read of some accounts where the bone paste gets absorbed by a kid's body and more surgery has to be done later. The thought of doing anything like this again is too much to bear.


Tuesday, July 14, 2009

Nestled In; Surgery Moved a Bit

We are nestled snugly into our room at the Ronald McDonald House. Simon is fast asleep, and we are still full from a wonderful BBQ hosted by an army of volunteers. The dinner included burgers, dogs, chicken kabobs, mashed potatoes, mac 'n cheese corn casserole, ice cream, cookies, watermelon, and some other stuff I have probably forgotten. It is amazing what people pull together and do here for the families who stay. Sure, there are some rules that are a tad of an inconvenience, but you just can't beat the place. I only wish that I lived closer so that I could do more than the pop tab collection.
Anyhow, getting back to our situation, the surgery was postponed by a few hours. Instead of starting at 7:30, we start at 10:30. This means that we report at 8:30. Our only concern is that Simon is going to be antsy in the morning. He usually starts his day with a milk-yogurt-instant breakfast shake, but he will not be able to have anything of the sort when he wakes up. Hopefully we can distract him with the play room down the hall. Wish us luck!

Ronald McDonald House

We are heading to the Ronald McDonald House in a little while as we do have a room. Woo hoo! Now, we will be able to walk over to the hospital at 5:30 a.m. tomorrow. Simon is so hyper today, as usual. He will be excited about staying at a new place tonight. Hopefully, the events of the next few days will not scar him too much. I want to bring home my happy, sweet, active boy.

Sunday, July 12, 2009

Getting Sick?

I have been struggling with nausea today, and Simon has had a bit of a stuffy nose. I think that I ate too much and too late for dinner last night, and we guess that Simon is having a bit of an allergy with the weather that came through here. We are hoping and praying that we all are healthy this week. Postponing the surgery would be a major upheaval.

Friday, July 10, 2009

Another Challenge

We had a busy morning in Orlando. At 8 a.m., we had to finish a hearing test since the results were inconclusive during the first attempt. The diagnosis is that Simon has a mild loss in both ears which does qualify for hearing aids. My insurance does not cover hearing aids, giving us the challenge of finding a way to get them covered or paid.
After the test was over, we walked a few blocks to the main building for a pre-admissions testing. Simon was a very good boy during all the vitals and even the swab on his arm. The blood draw was harder, but he at least did not require a straight jacket and 5 adults. (In the past, that is what it took!) He stayed in my lap and strained some, but they were able to get it done pretty smoothly.
After the testing was over, we took a load of pop tabs to the Ronald McDonald House, and then we picked up the hearing test report. On the way home, we stopped at the Golden Arches so that we could eat and Simon could play. Now, we are home and watching a severe storm roll in. It was a draining day.

Thursday, July 9, 2009

Getting There

Now both units of blood are ready to go, and the pre-op testing is tomorrow. His new room is shaping up nicely. He will be in his bed before the operation, and we plan to get him a fish as a get-well surprise. Hopefully, the fish will be in his room when he comes home next weekend.

Monday, July 6, 2009

Time Flies

I cannot believe that the surgery will be next Wednesday. One unit of blood is ready to go thanks to a dear friend, and another unit will be ready to go after Wednesday when my sis comes over. I have to call tomorrow to schedule the pre-op stuff and to see if we can do a hospital tour around the same time. The tour is more for Simon's sake as we remember too well the process and facility. If we are lucky, we will be able to do all of this either Friday or Tuesday, when we will be over that way anyhow. On Friday morning, he is finishing the hearing test, and on Tuesday, we will be going over to check into a room (either at the Ronald McDonald House or a hotel). I debated whether to get his hair cut beforehand, but I think that I will save the $20 and have the surgeons shave it all off. It will grow back before the staples even come out, and then the scar will be hidden before long.
Everyone keeps asking if Simon knows what is about to happen. I really do not know how to answer that question. We read books about Curious George going to the hospital and Franklin going to the hospital, and I talk to him about what will happen when he goes to the hospital. I am sure that he is listening, but I do not think that he has enough of a frame of reference to comprehend. At 4-1/2 years old, he is a bit young; and matters are more complicated due to his speech delay. He is very familiar with hospitals and various machines, but I have no idea how to prepare him for the aftermath. He will have staples from ear to ear for a few weeks, and we will be putting all kinds of gunk on the incision. His entire head will swell up for a few days with his eyes swelling shut for a short time. How do you explain all of this? The answer is that you really don't. He has seen pics of himself from the first time through, but I don't think that he relates the baby to being himself. Even if he did, he would not remember what it all felt like. I really hope that we will be able to make him as comfortable and happy as possible through all of this. They say that it is harder on the parents than the kids, but is it really?

Thursday, July 2, 2009

The Home Stretch


We returned today from our excursion to the Smokies to say our final farewells to Chris's mother. The trip was a good one, even if the purpose was difficult. This summer is one of many major events, and the key to survival is taking one day at a time. Now that we are home, our next focus is getting the house into a decent state. During the school year, we don't have nearly enough time to keep up with necessary things and find ourselves doing some major cleaning during the summer. One of our projects will be getting Simon's "big boy" room ready. He is getting a new queen bed and will start the transition now. This way, we can get him comfortable in it before the surgery, and then we will have a place for one of us to comfort him when he comes home. The kiddos who have this surgery usually need about a month to get back into a normal sleep schedule. It is hard to say whether the anesthesia has disrupted their rhythms or if they are afraid of the dark after having their eyes swollen shut, but they usually need lots of comforting and holding in the weeks of recovery. We hope to have a comfortable place to take turns with him at night so that we can alternate in getting some sleep. If all goes well, we will all be ready to return to routine when the school year starts again. Chris and I will have a new crop of young minds to mold, and Simon will start pre-k. Simon's noggin should be healed in time for soccer season, giving us some sense of a normal family life. We all have so much to look forward to.

Monday, June 22, 2009

Answers? Changes? Anything?

One thought that many of us cranio parents keep having is "Why are we putting our child through this? Is it necessary? Is it really worth it?" The surgeries are necessary, and we have to put our children through them so that they can have a good quality of life. Without the procedures, the deformation of the skull harms the child, in some cases to a point of being life-threatening. Each person's skull contains so much of what makes them who they are and allows them to live: a brain, eyes, nose, ears, and mouth. If the bones are not forming properly then one or more of these may be compromised. So, obviously, the surgery is needed. Still, the mommies and daddies who have to make this decision are burdened with the knowledge that they are putting their child's life into a stranger's hands. If something happens, the parents will feel that they have failed the child in offering the protection and safety that is inherently promised upon conception. It is a struggle, one of which plagues me right now.
I know that Simon needs to have this second surgery. His soft spots are getting larger, and his forehead has tiny holes. His brain does not have enough room to grow at the front of his skull, and he needs to have the holes filled in before he is out in the world of sports and rough play. Still, I feel twangs of guilt at putting him through it. I try to squash those feelings by thinking about why else this needs to be done. Simon is not at the same level as his peers in his speech, and I wonder if he might have headaches at times. This kid does not complain when he is in pain, but perhaps some of his odd behaviors are linked? Or do we just have a unique kiddo on our hands? Will we see improvements after the surgery? Or will he be a child who ends up struggling in school? Chris and I are of high intelligence, and we do not expect that our child must live up to what we can do. Yet, will we know how to handle things if Simon ends up being at the other end of the spectrum? To us, he is bright and creative and amazing, but we are his parents. How is he really, and how will he be after July 15? Only time will give us the answers. I must have patience and remain open to all the possibilities. Most importantly, I just have to treasure each moment with my little boy and make sure that he has no doubts about how much I love him.

Sunday, June 21, 2009

Please, Sir, May I Have Another?


I am a huge roller coaster fan, mostly of the steel behemoths that newly grace theme parks nowadays. I do not care for most wooden coasters, with the exception of Lightning Racer at Hershey Park in Pennsylvania. The steel behemoths either thrill me or relax me, either way triggering endorphins and other chemicals that give a natural high. With that said, the cranio coaster has been more like an old wooden coaster that has fallen into disrepair. The lap bar does not lock into place, and the car rattles so much that teeth fall out. The brake system, when it works, causes whiplash. Occasionally, cars fly off the tracks or tracks just break apart underneath the strain. The riders make it through intact but in need of some therapy. Many folks who get to take this ride only have to go through once. Soon enough, the ride is a distant memory, and those families remove themselves from it as much as possible. For us, the ride is on for a second time. My son inherited the condition from me, and his has been a more difficult case. If you want to catch up on the background, check out our site at www.thescofieldfamily.com/craniosynostosis (You may have to copy and paste this link into your browser.) I will continue to update the log on that site, but I will use this blog to write regularly in the upcoming weeks. This site will be accessible from the hospital as well, allowing me to post up-to-the-minute updates, especially when Simon is under the knife.
We want to thank all of you who are following our story and keeping us in your thoughts and prayers. During this stage of our journey, we are doing our best to get through some other major events in our lives, hoping that our minds can stay occupied enough to not reflect on what our child is about to endure again. Last time, fear of the unknown threatened to cripple our daily lives; this time, fear of the known threatens to do the same.