Toothbrush

We started brushing Ben's seven teeth this week. He doesn't mind it as much as I expected.

Our helmet appointment was this afternoon and his head hasn't progressed any further over the past two appointments. He's very close to being within the "normal" range for his head size and proportions, but I'm not sure he's going to get there. Helmet therapy is so uncommon for children of his age, and their bone structure is not as mailable aside from surgery. We go to Dr. Sami again in March and we will hopefully "graduate" from helmet therapy. I am so ready to be done with it.

Ben's Helmet

Yesterday we picked up Ben's helmet. He was not thrilled about the fitting, but once we were home, he didn't seem to mind wearing it as much as I expected. Because a body's heat is regulated through the head, he sweat a ton and it will take a while for his body to get used to wearing the helmet all of the time. We started with one hour off, one hour on during the day. Tomorrow we will try two hours on, one hour off, and build until he is wearing the helmet 20-23 hours per day by next week.

After much debate, we chose to put bug stickers on his helmet. We will probably change it often, but this seemed like a simple enough theme. It's still hard for me to see him in the helmet because he looks so different, but I have to remember it's only for a short while.

The helmet is called a Star Band and has a strap across the back that holds it together. The top screw is adjustable and holds the front and back together, along with the velcro in the back. Unless he starts pulling it off, we will be able to get by without having a chin strap.

We were also very excited to find out that Children's Miracle Network covered $750 of the $2,800 cost of the helmet. Our insurance will not cover the expense because they claim it is experimental. Blue Cross also warned that if we attempt an appeal, it will be denied because they consistently deny helmet claims and have no intention of changing their minds on the issue. So that's helpful. Anyway, we are happy to be on the last leg of our cranio journey and will hopefully have all of this behind us soon.

9 Month Check Up

Today was Ben's 9 month check up. He had his second flu shot (booster) and his first H1N1 shot. They also drew blood to check for anemia and he barely flinched during the finger prick (test came back normal). He has had more blood drawn and IVs in his short little life than I have had in all of mine.

He weighs 17 lbs 3 oz. and is 26 inches long. That puts him in the bottom fifth percentile for weight and the third percentile for height. The pediatrician said that if he doesn't grow more in length, then at his one year appointment he would like to run tests to check his growth hormones and thyroid levels. This came as unnerving, but not a huge surprise because I have been concerned about his size for quite a while now.

Yesterday we met with Dr. Sami and the helmet company, Larson Inc. Dr. Sami said Ben's head looks great and his healing is going very well. In the picture above, you can see how small it looks when compared to his first surgery scar.

Larson had to make a plaster mold of Ben's head. He is older than most of the babies that require this and he threw a huge fit. It only took ten minutes, but it was a long ten. He pulled the plaster away the first chance he got and we had to hold his hands. By the time it was over we were all covered in plaster.

His helmet won't be here for two more weeks. This is much longer than we originally expected, but I am out of paid sick days so I'm going back to work on Monday anyway. I'm sure Josh will be fine with Ben for those two weeks before Christmas break.

Mom Mom

Ben's personality is back! He follows me all over the house calling, "momomomom..." and he has been very clingy, but just as observant and curious as ever. He is back to trying to stand on his own, but timing couldn't be worse. Our helmet fitting is this coming Monday, and we will have the helmet about a week after that. Our first post op appointment and his nine month check up are also on Monday. He will hate getting the helmet and it will be hard for me to cover up his adorable hair, but I also look forward to the security of keeping him from bumping his head.

Home From the Hospital!

We were able to come home from the hospital this morning. The surgeon was very pleased with how well Ben looks, and we will be visiting him again a week from today. We will also be fitted for Ben's helmet that same day.

We took home arm loads of toys that people so graciously gave Ben as get well gifts. His new favorite is a singing, glowing, pink seahorse. For the most part, he is acting like his old self again. However, we have had a rough couple of nights. His surgery coincides with a developmental peak in separation anxiety, and I have held Ben for more than twelve of the past 24 hours. He has wanted to nurse non-stop, and will only sleep when held. I am so exhausted from the nursing and holding that I can hardly keep my eyes open and I'm beginning to get a little crabby.

Josh is trying to help, but Ben won't take a bottle, so there hasn't been much he can do. Hopefully tonight will be easier now that we are back home and in familiar territory again.

Look at that round head!

Three Days After Surgery

We had a very, very long night last night. Ben didn't sleep more than 20 minutes straight until 2am, then he wouldn't sleep unless I was holding him, and that would only last for an hour at a time or so. Most of the day has been about like that too. His swelling has really gone down and as the day has progressed. He has needed no oxygen or medicine at all except for Tylenol with codeine, and they are almost certain we will be going home tomorrow. It has been a long few days, but it's good to finally see him smile again.

Out of PICU

We are out of the pediatric intensive care unit (PICU) and Ben is doing much better. His breathing and other vitals stabilized. His swelling really peaked today and he was awake but couldn't open his eyes. This made him really fussy and irritable, but he slept through most of the day. They are still keeping him pretty heavily medicated. He has no tubes or wires except for oxygen. He also still has the direct IV into his chest for the nurses to administer medication and draw for blood tests.

Dr. Sami and his wife visited and brought us flowers and a whole bag of toys. They could not be a sweeter couple. We have tried to take turns holding Ben upright and propping his bed up as much as we can and this has helped reduce the swelling enough that his eyes have opened a few times. The picture is of him this evening and (believe it or not) he really looks a lot better than he did earlier today.

I am relieved that the swelling has peaked and I hope his pain will be easy to manage and medicate as he becomes increasingly mobile in the next day or two. We will be going home either Monday or Tuesday as far as they can tell.

Thank you all for the kind emails and comments. Sorry I haven't been able to respond to everyone, but I really appreciate your thoughts. We're almost through this.

Day After Surgery

We spent last night in a hospitality room while Ben was in PICU, and we were actually able to get some sleep. This morning his vital signs were all improving, but not quite where they wanted everything to be. His blood pressure was still a little low and pulse a little too fast. The swelling was noticeable from the start of the day and by this afternoon he couldn't open his eyes. They took him off the breathing tubes late in the afternoon. We were finally able to hold him and he drank a couple of bottles of Pedialite before (finally) nursing. They had given him Tylenol with Codine and were going to start morphine tonight if needed. Around 10:00 we left to return upstairs to sleep for a bit. They will use the milk I have pumped, then call if I need to go downstairs. If everything continues to improve, Ben will be moved to a room on the pediatric floor tomorrow.

Surgery Day (redux)

Ben's surgery was today and he will be just fine, but it was quite a dramatic day in all.

5:30am - We arrived at hospital and checked in.

6:30am - Ben's getting fussy and hungry, we went through weight (16lbs 9oz. and length 27 in.)

7:00am - We moved downstairs to pre-op with Ben and waited with several other babies getting ready for surgery.

7:30am - We handed the baby over to the nurse who took him to the operating room.

10:30am - We were told Ben's surgery was starting now and they had a difficult time starting IVs and he would be bruised all over his arms and legs.

11:30am - The initial incisions were made, but then two IVs clotted. They stapled his incision closed and turned him back over to get more IVs open. Then the other two clotted and Dr. Sami had to start a large emergency IV in Ben's thigh until the anesthesiologist started a direct line into Ben's heart. They then added several more IVs in his groin and wrist.

12:15pm - Dr. Sami came out and explained what happened and that now they were starting the surgery all over essentially.

1:15pm - Dr. Sami came back and said the most dangerous part of the surgery is over (removing the skull), and now Dr. Shah is reshaping the bones that were removed.

3:30pm - Dr. Sami visited with us again and said the surgery is over.

4:30pm - Josh and I were able to see Ben in PICU.

When they opened Ben's head, you couldn't even tell he had a surgery prior to this one. He had multiple sutures closed, more than just the original one. That level of bone closure would have definitely led to brain damage and further neurological problems and they focused on his forehead and the top of his head to get the best correction in shape and to allow for brain growth.

Unlike our original plan, they did not address the back of Ben's head because the surgery lasted much longer than expected and he lost three times the blood that they anticipated. He will most likely need a helmet for six months, and we may need more than one helmet because his head will grow. The surgeons were aggressive with removing the overgrowth of bone, but still said they accomplished about thirty percent of the correction he would need to have a "regular" head shape. We will reevaluate his need for further surgery at age three unless any problems arise between now and then.

Ben will be in PICU for the next couple of days and he still has breathing tubes in and the IV going into his heart, as well as several other IVs and a catheter. He will continue to be heavily sedated and medicated until his breathing tubes are out. He opened his eyes for a few minutes, but they were quick to put him back to sleep so he wouldn't become upset over the breathing tubes. His heart rate has been high, his blood pressure very low, and he's had a weak pulse. His blood sugar has been all over the place and he hasn't needed any additional transfusions but they are watching that closely. They have a nurse bedside 24/7 while he has the breathing tubes in.

His head is very lumpy and rough looking, and it will take about three months for most of that to smooth out. He has not swollen much yet. In three days, his eyes will swell shut and his head will be like a pumpkin. From then, the swelling should go down and we will be able to go home once he can open his eyes again. I will be sure to update everyone as things progress.

Preparing for Surgery Again

My entire focus has shifted to preparing for Thursday. I recently contacted another mom going through the same thing as me. Her son had his second surgery three weeks ago and he is six months old. Through a series of several emails over the past two days, she has shared some new insight and advice I hadn't thought of prior to now.

She was unable to nurse for the first four days after surgery. I really, really hope that doesn't happen this time. That would be so difficult on both of us. Her hospital was a lot less nursing friendly when compared to most, so I can't imagine we will have to wait that long.

She also brought crib toys, like the fish tank hanging on the inside of Ben's crib, to make the environment feel a little more like home and so that he can at least hear familiar sounds when his eyes swell closed.

Our trunk will be packed with our equipment from home - including the Bumbo chair. She propped her son in his to help the swelling move out of his face when he was really swollen. We will also be bringing the Boppy pillow again, to prop his head on while he is sleeping.

The hospital has already recommended we bring a few other toys from home. He has a glowing stuffed owl (reminiscent of a glow worm from when I was a kid), and a blanket that he usually sleeps with.

Josh will also be returning home regularly, so I'm sure he can bring the rest of Ben's truckload of equipment as needed. This kind of goes against my less is more policy of packing, but I think all of this will make it easier once we're there. And if it's in the way, I can always send it home with someone else.

*Today's pictures are of Ben and his play kitchen. Our entire house is slowly becoming one giant play room.

Memories of the Last Surgery

As Ben's surgery date is approaching (November 19th), I am trying to recall the most important details and reminders to prepare myself for the upcoming hospital stay. Ben needed plain onsies to help hold the drain close to his body to keep him from pulling it out. I'm going to bring more separates than pajamas this time because sometimes he could have worn just pants and a onsie but not socks due to IVs and so on.

The hospital told us they would not be putting IVs in his feet this time unless they have to. Hopefully his IVs will be in one arm and they will place his arm on a board to keep him from pulling the tubes out. This may make it more difficult to nurse, but he is so much more mobile and aware of everything around him. I have a feeling that will make this hospital stay much more difficult.

For myself, I wore my nursing tank tops daily and will do the same this time. I packed way too much clothing for myself last time and can really narrow that down this time around. Josh will also be coming home often and he can always pick up what I forget.

I will also bring less stuff with me to the hospital room. It seemed like I spent a lot of time last time sorting and organizing our things, and I think the less we have the easier that will be.

*Today's picture is of Ben and his friend Clifford (dressed as Harry Potter).

The Second CT Scan

Ben had his CT scan this morning and it went so much better than I had anticipated. Ben had to fast to be ready for anesthesiology, so he was a little cranky. As the nurse came into the room to start the IV, I was reminded of the hours it took during the day of surgery to get Ben's IVs started. He had bruises on his wrists, ankles, arms and knees after the whole thing was said and done. I hated for him to go through that again, for a five minute scan.

We discussed our options with the doctor, and we were told we had three. 1) Start and IV and medication to put Ben to sleep and quickly wake Ben up after. This was the doctor's favored option. 2) Give Ben something to drink that will knock him out. It may take several hours for him to wake up and we can't leave until he's awake and eating. 3) Try to get Ben to sleep or lay still through the five minute scan. The biggest risk is radiation. A CT scan is as much radiation as 300 chest x-rays. If Ben were to wake up, then he would have double the radiation as they had to do the scan again.

While all of this was explained, I wrapped Ben in a blanket and began rocking him, and hoping. I handed him off to Josh, and just as the nurse came into the room, Josh's magic touch put Ben to sleep. She called downstairs and told everyone we are coming right now to scan because the baby fell asleep. We rushed downstairs, they put warm blankets down to keep Ben from waking up, and scanned him in total silence. He stayed sleeping and still through the entire scan. It was amazing.

Later that day, we had our appointment with the plastic surgeon, Dr. Shah. He seemed incredibly confident, friendly, and we feel very positive about he and Dr. Sami performing Ben's surgery. Dr. Shah showed us some video footage about their procedure. He discussed what a positive working relationship he and Dr. Sami have, and because they have performed this surgery so many times together, they have a definite routine down in the operating room. Dr. Shah also mentioned the hospital stay would only be about 72 hours most of the time. I thought that was pretty unbelievable.

We scheduled Ben's surgery for November 12th (a Thursday), and we'll have to be there at 5:30 in the morning. That would put us going home Sunday evening or possibly Monday, depending on how things go. Dr. Shah re-emphasized the importance of a helmet and seemed very put-out upon hearing that our insurance company refuses to pay for it due to it's "experimental" nature. However, we will be getting a helmet within the two weeks following surgery and he concurred that the sooner the better not only for head shaping, but for Ben's protection considering his mobility.

After our appointments going so well that day, we dropped Ben off at the grandparents and went downtown for a dinner and a movie. We ate at South Avenue Pizza Company (not their best night), and saw The Invention of Lying (we thought it was hilarious, but it's not for everyone).

It was an exhausting day, and in the middle of it, we both got our flu shots. So we feel a little puny this morning, but much more positive overall, now that we have a surgery date in place. Our next appointment is with Dr. Sami on Monday.

*The photos today are of my dad and Ben, and my grandpa (on dad's side) and Ben.

Baby Games and More Insurance Problems

Ben has games and routines now. Josh or I will make a stack of blocks and he loves to knock them over and laugh. Sometimes he likes pat-a-cake or peek-a-boo, he always loves to be read to, and he's got a new circuit he likes to make around the house. He will start in the living room and crawl to the front door, where he can see the chickens in the yard. He will then pull on some of the houseplants in the entry, then crawl to the sliding glass doors in the dining room. If he sits there long enough or starts hitting the doors, the dogs come up to "play" and he thinks this is hilarious. He will then go into the kitchen and open drawers. He found the sippy cups last time. Ben will then return to the living room to pull the DVDs off the shelves, and then start over. It's a pretty safe routine, but I can see that Josh is getting worn out from chasing Ben around all day. I came home yesterday with the gift of a baby gate to try to help contain the baby. Josh wants a baby corral thing, but we have yet to find a good deal on one.

On the medical front, we received more bad news from the insurance companies. This time, related to Ben's first surgery. At that time, Josh and I each had insurance through our employers and Ben was covered under each of us. Josh's company used Coventry Insurance, and they had been withdrawing from each paycheck to cover Ben's medical insurance coverage. However, after the surgery, they refused to pay for any of their portion of the bills and said that Ben was never covered by their insurance company. We appealed this, but received a letter recently stating that the board of trustees voted and denied our claim and refuses to pay any of the outstanding expenses of Ben's surgery. They aren't even reimbursing us for what was taken out of Josh's paychecks! So now we have several thousand dollars owed to the hospital for Ben's first surgery, and haven't even started on the second. The letter from Coventry also noted that if we wish to take any further action, then the circuit court needs to become involved. At this point, our legal costs would exceed the medical bills, so further action is pointless and the insurance companies win again.

Fortunately, Anthem Blue Cross did pay for the majority of the first surgery, or we would have much, much more than several thousand still owed. Theoretically, we should only have the expense of the helmet with the upcoming procedure, because we have met all of our out of pocket expenses for the year. I truly hope that is the case.

We Have Been Approved!

September 29, 2009

Anthem Blue Cross

Preauthorization Department

Fax: 1-888-656-5721

RE: Benjamin Garrett

Dear Blue Cross Anthem Preauthorization Department:

I am writing to you in regards to a request submitted by Dr. Charles Mace and Dr. Douglas McNeal for Benjamin Garrett to receive services at St. John’s Hospital with Dr. Sami Khoshyomn. Anthem Blue Cross has denied coverage because St. John’s Hospital is out of my HMO network.

Dr. Mace performed Benjamin’s first brain surgery at Cox Hospital when Ben was fourteen weeks old. However, Benjamin’s skull has closed again and he requires an additional surgery. Dr. Mace is not a pediatric neurosurgeon, and because second surgeries are so uncommon, we have sought treatment with a pediatric neurosurgeon.

Dr. Khoshyomn is the only pediatric neurosurgeon in the region. Over the past two and a half years, Dr. Khoshyomn has performed over forty surgeries in children who also have craniosynostosis, Benjamin’s condition. His method involves inserting absorbable plates and screws to keep the bones apart, followed by three to sixth months in a molding helmet. Dr. Khoshyomn has had such positive results with this method, that no children have required a second surgery. Cox does not have a pediatric neurosurgeon on staff.

Benjamin needs this surgery soon. If we wait beyond his first year of life, his bones will not be able to regenerate and fill the void created by the needed surgery and he will need artificial bone grafts implanted later, as a young child. This surgery is necessary for Benjamin’s skull to open to provide adequate brain growth, in order to prevent the possibility of seizures, blindness, and major developmental delays.

Additionally, Benjamin is facing living with a physical deformity and I truly believe it is too much to ask of him that he simply live his life with this deformity and its complications when there is a proven medical procedure available to correct it.

For these reasons, we are seeking Blue Cross Anthem to make an exception in Benjamin’s coverage, to include surgery performed by Dr. Khoshyamn and all of the associated hospital and medical expenses through St. John’s Hospital in Springfield, Missouri. Should you need any additional information, feel free to contact us at XXX-XXX-XXXX. Thank you for your time and assistance in this matter.

Sincerely,

Josh and Lara Garrett

Enclosures:

A record of phone conversations between Mr. and Mrs. Garrett and Blue Cross Anthem representatives (5 pages).

A patient story of Dr. Khoshyomn's that explains the procedure he has also proposed for Benjamin. This article also covers the possible complications of Benjamin's condition if left untreated.

Copies of St. John's Pediactric Neurosurgery website and Dr. Khoshyomn's credentials.

A news story about Dr. Khoshyomn and Dr. Shah's method of craniosynostosis surgery.

Referral letters from Dr. McNeal, Ben's pediatrician, and Dr. Mace, Ben's original surgeon.

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That letter, those documents, and an extensive phone conversation between Dr. Sami Khoshyomn and Blue Cross Anthem were enough to persuade the insurance company to cover Benjamin's surgery and provide us with in-network level coverage. They are still denying coverage of the helmet due to its "experimental" nature, but in the big scheme of things, that's a minor issue. We are so relieved to have won our appeal and, as Josh said earlier today, now we just have to get through brain surgery. Our next appointment with the surgeon is scheduled for October 12th, and we will be setting a surgery date at that time.

Making Progress

The title is deceiving, but I feel that we are at least a tiny bit closer to feeling ok about Ben's next surgery. Today we met with Dr. Sami Khoshyomn at St. John's. He made us feel so incredibly comfortable with his ability and methods. His specialty is craniosynostosis, he is the only pediatric neurosurgeon in the region, and he has never had to complete a do-over surgery, out of over forty similar operations during the past three years. His method involves using plates and screws that dissolve after a year of holding the bones in place. This is in conjunction with a molding helmet that Ben will wear for 3-6 months.

This video shows Dr. Sami (as he is known), discussing the procedure. Oddly enough, this video aired on the 10:00 news, the same day and time that Ben was born.

I still feel we have an uphill battle to climb, trying to get our insurance appeals process completed in order to allow for Benjamin's medical expenses to be covered through my HMO. Dr. Sami said he will help us with that process in any way that he can, but right now we are waiting to hear from Anthem Blue Cross. If we are initially denied coverage, then we are prepared at this point to get legal representation involved.

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For a little stress relief, mom, Ben, and I went to the zoo yesterday and the picture above is just after Ben stuck his finger in the goat's nostril. Benjamin also had his first experience with hand sanitizer yesterday.

The Insurance Nightmare Continues

From the last post until now, I have probably made 70 phone calls related to problems with our insurance company. After hearing we were denied coverage at Johns Hopkins, our surgeon referred us to a surgeon at Barnes Children's Hospital in St. Louis. I called to once again, make sure we would have insurance coverage at this appointment and was confirmed that our insurance was accepted at Barnes Children's. We made our appointment and I prepared to miss school to go. I had all of Ben's paperwork transferred from the surgeon and pediatrician's office.

Within hours of finishing that, we were called saying we would not receive HMO coverage at that appointment either. We could receive out of network benefits and would have to pay the first $1000 out of pocket, in addition to a large percentage of Ben's care after that. I cancelled that appointment, then asked the insurance company where could we go to get a second opinion about Ben's head.

Blue Cross Anthem said we could go either to Cardinal Glennon in St. Louis or the Cleveland Clinic Neurological Institute. I hadn't heard of Cardinal Glennon prior to this, but we were given the name of a specific surgeon we were told by the insurance company to see, so we made an appointment with his office earlier this week.

This morning we had our appointment at Cardinal Glennon. From first impressions alone, the facilities at Cox South in Springfield are so much nicer. When we checked in, we had to fill out paperwork and time-stamp it, then put it in a basket. After that, we were called up to one counter where we were told we had no appointment on record and they didn't know who we were. I explained our situation and they asked who I talked to. I didn't write down the appointment desk lady who I called several days ago, and I became worried about this experience.

Quite a bit later, we were told there was a note they found somewhere about our visit, but they had us down as a cleft palate case. Quite a bit later, we were escorted to another desk where we turned in insurance paperwork and while moving from station to station, the staff seemed generally surprised we would drive all that way to go to Cardinal Glennon. We silently concurred.

Ben was weighed and measured (16 lbs and 25 1/2 inches) and then we were escorted to another room. After about a half an hour later, a nurse peaked in, then walked off saying "Oh, I forgot about..." Over two hours after we arrived, we saw the surgeon and another medical staff person that was not introduced.

Dr. Carstens is a pediatric plastic surgeon who agreed that Ben needed surgery, but proposed a major cranial vault remodeling with the front of Ben's skull. This included removing, sculpting, and repositioning his forehead. We are incredibly uncomfortable with people rearranging Ben's face. The back of our head and opening the skull for adequate brain development are our major concerns. I brought this up with the surgeon, but this was dismissed because in his opinion, the appearance of the face is the most important. He also said Ben had a "toaster-shaped" head, which annoyed me.

After this overall negative experience, I called the insurance company with our list of reasons why Cardinal Glennon is not a good fit for our situation. I called the surgeon and he agreed.

He and our pediatrician are now going to write referral letters for us to see Dr. Sami Khoshyomn at St. Johns. He is the only pediatric neurosurgeon in Southwest Missouri. Dr. Mace (our first surgeon) is a neurosurgeon with pediatric experience, but not strictly a pediatric specialist. Dr. Sami's children attend the school where I teach, and we will have a consultation with him on Monday.

St. Johns is not within our network, but we are going to try desperately to appeal to the insurance company to get HMO coverage with this surgeon to avoid the incredible travel expenses associated with traveling to Cleveland. We should find out tomorrow if our appeal is approved or denied. Based on that decision, we will either start this process again in an effort to go to Barnes Children's Hospital in St. Louis, or we may be flying to Cleveland as soon as this coming Wednesday.

A Day of Bad News

This morning, my HMO (Blue Cross Anthem) called and said they were denying Benjamin's medical coverage at Johns Hopkins! I was pretty devastated, but called and cancelled our appointments and travel arrangements.

I asked about our other options, and Josh spoke to our surgeon here in Springfield. He referred us to Dr. Park at St. Louis Children's and we made our appointment there. I cancelled my substitutes for next week and prepared for us to go to St. Louis.

By lunch, Blue Cross called again and denied our coverage there too! So we asked, where in the United States could we go that would be covered by my HMO. They said we can only go to Cox South in Springfield, where we had the first surgery. I emphasized why we need a second opinion in our case, and even our surgeon is in favor of a second opinion.

We were granted "special" permission to go to Cleveland Clinic Neurological Institute to get a second opinion and have our HMO coverage. I asked for this statement in writing before I go through everything to arrange a visit and travel accommodations. They said they would fax it to my pediatrician along with the referral paperwork he needed to fill out.

After school today, I stopped by the pediatrician's office and they hadn't received anything. My pediatrician doesn't even know why they would want to talk to him, because he can't really give his assessment on our situation from a neurosurgery perspective, and they should really be talking to our neurosurgeon instead. Either way, the pediatrician offered to call in the morning, try to help us get an appointment, and explain our situation as best he could, but they will most likely want to talk to our surgeon as well.

That's all fine with me. I just want this to be over with! I called the insurance company back and said they would re-fax the letter to the pediatrician's office as well as to my work tomorrow morning. After that, and after we have an appointment, then I will start with the travel arrangements.

My husband called Cleveland this afternoon to talk about what was going on, and they were very hesitant to schedule a consultation, pre-op and surgery date in one visit, so we will most likely be traveling there two to three times over the next couple of months.

I just don't know what to think now. My pediatrician said that if we don't have a letter stating Anthem Blue Cross will cover the Cleveland Clinic Neurological Institute by tomorrow at 5:00, then we should probably get a lawyer.

I feel like I'm on such a roller coaster right now. We've gone from leaving for Baltimore on Saturday and having a surgery date in two weeks, to having no idea if and when Ben will even have a surgery.

I know that everyone I know has heard me repeat this numerous times over the past week, but we are the reason health care needs to be reformed. No matter your opinion of President Obama, something needs to change with our system. An infant shouldn't be denied the best possible care, especially when it is involving brain surgery. This is all so terribly unfair, and could be easily prevented with the right legislation.

This is such a big blow. It is making it really hard to be a good mom, wife, teacher with all of this rattling around in my head. I hope I have really positive news to post soon, and know a little more about what's going on.

Ben is Having Another Surgery

Some of you might have heard some slight mention of this possibility, but unfortunately Ben is having another surgery. The first surgery went as planned, but the bone grew back and fused again, much quicker than what was expected. We knew there was a very slight chance of his needing another surgery. We had sought second, third, and fourth opinions on Ben's condition, and have decided to travel to Baltimore, MD to Johns Hopkins Hospital for Ben's surgery. They are one of the top pediatric neurosurgery teams in the US, and we feel good with our decision to travel so far for Ben's treatment. Most of the teams in the midwest had not performed a second operation of this kind on an infant under the age of one.

Our pre-op appointment is on September 30th, and the surgery date is scheduled for October 7th. We will be in Baltimore from September 29th through October 14th.

During the week between the pre-op appointment and the surgery, we plan on seeing Washington D.C. (40 miles west of Baltimore) for a few days. It will be our first family "vacation" - granted under less than ideal circumstances, but we might as well make the best of it. We will also have to return to Baltimore more over the coming year. I will be sure to let everyone know how things go and anything else I find out between now and then. Thank you all for your love and support.

Maybe Not a Helmet?

Ben's helmet fitting was earlier today, and after seeing Ben, the orthotics place said they won't give him a helmet. The clinic said that typically, when a baby has the same head condition but undergoes the endoscopic methhod of surgery, they will immediately be fitted with a helmet. We had considered that type of surgery, but thought a worse surgery was worth not having to deal with the helmet. I now regret not making that decision before, because I believe we would have had better results.

The orthotics place said they had never heard of giving a helmet to a child with already fused plates, and three months out of surgery, and with the type of surgery Ben had. They said that without any CT scans, they cannot issue a helmet because they cannot determine if the plates have re-fused. So they refused providing a helmet- on the premise that giving him a helmet could cause major brain damage and restrict further head and brain growth all together. At the end of the appointment, they said they are going to bring our case before a national panel via conference call, and see if there are any other cases nationally, similar to ours.

From this point, I am becoming increasingly concerned about our options either causing Ben to need another surgery down the road, Ben forever having a severely misshapen head, or Ben having brain damage from a helmet that restricts brain growth. We will hopefully hear back from the orthotics place next week sometime, but they indicated we will probably hear that they will not provide a helmet in this case.

I emailed a pediatric neurosurgeon in Columbia, MO and he (Dr. Muzzafar) said it seems like Ben's procedure wasn't done well - not that we need a helmet. He actually said a helmet wouldn't do anything, and waiting won't help anything either. He said the only option is another surgery and it needs to happen as soon as possible.

So now I feel like I am at such a loss. I am considering going to Johns Hopkins or Mayo, because they are two of the highest rated pediatric neurosurgery teams. I feel like all over the midwest, everyone I have contacted has told us something different.

Springfield - wait and see
St. Louis - helmet
Kansas City - no response
Little Rock - no response
Dallas - surgery
Columbia - surgery

Still waiting to hear from another surgeon in Springfield, but I just feel like we need to get out of the area to go to one of the best hospital possible for our situation.

This is all so frustrating and I am really obsessing about researching hospitals, surgical teams, and research about our situation.

I know that overall, his head shape isn't terrible now. However, I fear that if it doesn't change much, or even gets worse, that he will look dramatically different from others by the time he is school-aged. I am prepared to handle that, but I hate to think we had a way to prevent any problems like that and we chose not to.

Contacting St. Louis Children's Hospital

As of our last meeting with Ben's surgeon Dr. Mace, we have felt uncertain about Ben's future head shape. The large opening that was cut during Ben's surgery has already closed, and the doctor has little hope in his head shape changing much from what it looks like right now. I had mentioned helmet therapy or another surgery, asking if that would be a possibility. Dr. Mace wanted to wait another eight weeks to determine what should happen next. Josh and I weren't comfortable with waiting that long, so I made some new connections on a craniosynostosis message board, Cranio Kids. Through that website I was referred to Dr. Matthew Smyth. I emailed Dr. Smyth and have posted our correspondence below.

Dear Dr. Smyth,

I found your name on a message board discussing craniosynostosis. My son was diagnosed when he was two days old with a completely fused sagittal suture. At 12 weeks old, he underwent open sagittal correction with Dr. Charles Mace, at Cox hospital in Springfield. We are now 14 weeks after surgery, and Ben no longer has any soft areas that can be felt. His frontal fontanel is fine and wasn't a problem before either. We met with Dr. Mace last week and he expressed some concern about Ben's head closing early, and said we probably won't see a great deal of difference in head shape from this point on. He also said anything further would purely be cosmetic and he wants to see him again in eight weeks to see if anything has changed.

I am writing because I would like a second opinion. We didn't have any problems with Dr. Mace or Cox hospital for the first surgery, but I'm not sure if we are ok with his head staying as narrow as it is right now indefinitely. I think as a baby he looks fine, but his head is so elongated, I can't imagine him ever being able to wear a bike helmet, or play t-ball or any of the other normal kid things that might require something on his head. I also worry about his teenage years with the protrusion that he still has on the back of his head.

Prior to surgery, his head was very severe. His forehead protruded and the back was almost like a football point. He also had strong indentions at his temples.

I am sure it is difficult to provide an assessment without us visiting your office, but I have included links below that include before and very recent after pictures. My main questions are: Is helmet therapy an option at this point? Should we continue with the "wait and see" approach? Should we have more scanning done? (We haven't done any since he was 2 days old.) Is it really just cosmetic at this point, or could too much pressure be put on his developing brain?

Other medical related things: He contracted staph infection on his incision with the first surgery and was on 5 weeks of antibiotics but is fine now. He is tiny - 10th percentile for height and weight, but has met all of his developmental milestones at an average rate. He has horrible reflux and has been on Zantac since he was two weeks old. Other than that, he's a pretty healthy and happy baby.

Here are some before pictures (scroll to the bottom, I made a website to explain the whole deal to my friends and family):

http://ozarkmountainblog.blogspot.com/2009/03/questions-about-bens-craniosynostosis.html

Here are some after pictures I took last night. I honestly believe it's worse in person, but it was hard to get the right angles to show it. I think Image 3605 really shows the flat spot and the knob, as I affectionately call it.

http://www.flickr.com/photos/41276639@N06/sets/72157622166728816/

Thank you so much for taking the time to read all of this. I genuinely appreciate it. The person I spoke with on the phone in your office was also so incredibly friendly and empathetic.

Thank you again.
Sincerely,

Lara Garrett

Dear Mrs. Garrett:

I have reviewed your email and the images, and also discussed Benjamin's case with my colleague in pediatric craniofacial plastic surgery (Dr. Alex Kane, with whom I perform craniosynostosis surgery at our center at St. Louis Children's Hospital). It appears that Dr. Mace performed an open strip craniectomy. At our center, we perform a similar operation, but we use an endoscope (small camera on a stick) to make the incisions smaller, and perform more extensive bone removal with lateral releases of bone in addition to the removal of the fused sagittal suture. We then use a custom molding helmet until age 12 months or so. There are multiple approaches to sagittal craniosynostosis, and they vary from center to center.

Given Benjamin's current situation, I might consider a molding helmet. It may help with rounding the head shape somewhat over the next few months. If you choose to go with a helmet, then the sooner the better because he is still in a period of rapid head growth with more effectiveness of the helmet.

If the cosmetic result is sub-optimal after a course of helmeting, repeat surgery could be considered, but usually we don't end up re-operating in these situations unless the appearance is severe/unacceptable. Given the subjectivity, that can be a tough call, obviously.

Dr. Kane and I would be happy to meet with you and Benjamin so we can better evaluate him and advise you. We would not jump to a scan at this point, rather we'd review what scans are already done, the operative report from Dr. Mace, and his current clinical exam.

Please let me or my office know if we can be of further help.

best regards,

Matthew D. Smyth

His response was so warm and friendly, that I would have really liked to have worked with him. However, because he is out of network and I have a horrible HMO, it isn't the most realistic option. We took this information and asked Dr. Mace again about helmet therapy, and have been referred to an orthotics clinic to have Ben fitted for a helmet.

In the picture on the top of the page Ben is in another one of my brother's outfits from when he was a baby.