Surgery Day

Thank you for your prayers, they are powerful! We are sitting here with Elden now in the PICU- it is 9 pm. He is still coming out of the anesthesia – and we can tell that he is in pain. Overall he is doing good and the surgery went well – no complications and no blood transfusion. Now we just have to get through the next few days of recovery. Here is how our day went:

Arrived at hospital at 10 am, checked in, waited. Went back to the OR holding area at 10:45 and had a private room where we waited for nurses to come and take information.

This was a hard time – all of the waiting. Plus, we couldn’t feed Elden and he was hungry and mad about it. The last time I could nurse him was at 8:30 am, and then he had some Pedialyte around 10:30 am. I wore him in the BabyBjorn and he eventually fell asleep. Thank God!

The surgeons came around 1:15 and talked to us about he procedure. It was Dr. Jimenez and his wife/surgical partner Dr. Barone. This was the first time we met her – and she was very nice. Her and Dr. Jimenez seem to make a great team. They assured us that they would take good care of Elden, still it was hard to think about what was about to happen to him.

I found this link on their website that has a PPT presentation that shows actual photos of the surgery (not Elden’s surgery, just previous cases). These pictures helped me just because I wanted to know exactly what they would be doing. Just a warning: they are graphic and may be disturbing to some. Here is the link, at the bottom of the page, there is a link that says “Endoscopic Treatment of Craniosynostosis” – click on this and it will download or open their PPT file.

Finally the anesthesiologists came around 1:40 to talk us through the procedure and what Elden will go through. Here is our team of anesthesiologists. Then they took him back at 2 pm., he was just a smiley happy baby when they took him. The prep time took 1 hour – they used anesthesia gas to put Elden to sleep, and then started his IV, took lab work, intubated him, and positioned him for the surgery. Pat and I went to the cafeteria and sat outside during this time. The case manager Wai called us at 3 pm to let us know that they had started – and had made the first incision. The surgery took less than an hour and we received a second phone call from Wai at 4 telling us that it was done. She met us in the waiting room and we met in a family conference room with the surgeons Dr. Jimenez and Dr. Barone. They told us that it went beautifully.

Dr. Jimenez told us that Elden really was a special case – his sagittal suture was fused and growing twisted toward the back because of the positional molding. Because it was growing this way, a keel of bone was growing downward toward the brain and was causing pressure. Also, his sagittal sinus (the main blood supply to the brain) was unusually close to the suture – something they could have only seen with this type of surgery – through the endoscope. If we would have gone with the traditional surgery – it could have been bad, it could have been severed because the position was different and they would have been cutting blindly. WOW, so thank you God for leading us here to have this type of procedure done! My heart just sank when the told me that and I am probably still processing it. It is very humbling and just brings tears to my eyes every time I think of it.

Dr. Jimenez and Dr. Barone also gave us a “gift”. In an envelope, they had taped the small pieces of Elden’s hair that they shaved – and it said “Elden’s first haircut”. It was very sweet. They don’t shave the whole head – just small strips where the incision is made.

We were then led up to the ninth floor to the Pediatric Intensive Care Unit (PICU). We had to wait in the waiting area while the nurses set Elden up – but really we got to see him right away.

This was the hardest part for me. Maybe also because I was trying to keep it together through the whole day. Seeing Elden in the bed all hooked up, the cuts in his head and hearing his little raspy cry just broke my heart. There was nothing I could do for him. A nurse was trying to burp him because they get air in their tummies from the breathing tube. He was just so uncomfortable.

His head already looks different – the back looks completely flat to me. But it is swelling and “boggy”. The cuts aren’t too bad looking – no outside sutures, just a surgical super glue to hold the skin shut. The purple stuff on his head is the super glue. The nurses set up all of the monitors with alarms so that if his levels went below certain numbers – beeps or alarms would go off. These freaked me out at first – to hear those alarms go off. After a while, they set it up so that they would only go off at the nurses’ station. He is hooked up to an IV in his hand, and many other monitors with wires- blood pressure cuff on his leg, oxygen level monitor on his toe, heartbeat tabs on his chest, etc. Still, he is the cutest thing ever.

I gave him my shirt to have next to him because it smells like me. And covered him with the special blankets that Aunt Jaina and Jackie made for him. Jackie’s blanket has a prayer in every stitch and I love the thought of that.

All of the nurses and staff are very nice and accommodating to us. There is a little fold out chair for me (Jessica) to sleep on in the room with Elden. Pat and I will trade off sleeping there tonight. Grandma and Papa Tony and Aspen came for a visit. Poor Aspen couldn’t actually come in to see her brother, but Grandma and Papa Tony were able to. Little Aspen just doesn’t understand what is going on, I am sure it is scary for her. This will be our first night away from her. I know she is having a hard time.

Elden slept a lot at first, and then would wake up startled and fussy and then go back to sleep. Elden started to wake up more around 7:30 pm and I tried to breastfeed him. He did eat a little, but it was scary for me to position him, and hold his head. They said I could do it like normal, but he was still just so uncomfortable. He ate a little and then got really upset. They gave him more morphine. We’ll try again in a few hours…

A Marathon Appointment Day

Thank you so much for the great comments and emails today. It really does keep our spirits up knowing that a bunch of love is being sent our way.

Today was in a word – TIRING! We were at the hospital from 10 am – 4:30 pm, and probably spent 4+ hours waiting, and waiting and waiting. Elden was a champ and just hung out the whole time and smiled at everyone. Everyone was so nice to us. We went to the Specialty Pediatric Clinic at University Hospital. This is a huge hospital! You know, the kind you imagine on those crazy soap operas – yep, huge. Again…very thankful we live in Flagstaff.

There were a lot of families in the pediatric waiting room and we noticed right away the other families who had traveled to get the same surgery for their baby. One couple we met was from Oklahoma City and it was nice to talk with them.

Our first meeting was with Anne Leonard who talked to us about being part of a study on the bone of babies with craniosynostosis. Basically they are compiling bone from these surgeries for a repository for the use of future studies on the cause of this condition. We gladly agreed to the study – hopefully Elden’s beautiful God-made bone will help someone else someday.

After that we met with Blake from Orthomerica and had a pre-op scan done of Elden’s head. This was done with the “StarScanner” and was thankfully a quick and non-traumatic experience for Elden. Prior to this special scanner, babies had to be “casted” which involved covering their little head with a wet plaster process which not only took time, but was traumatic for babies.

First, Blake took several measurements of Elden’s head. Next, Elden got special stickers at each ear and a form-fitting do-rag that conformed to the shape of his head. This was basically a light white, cotton sock with a slit in it for his face. Isn’t he cute! We got to keep an extra one for him. There are photos here of our meeting with Blake, the StarScanner, and the computer screen with Elden’s scan. Oh yeah, and from the scan, they make a life-size bust of Elden’s head to make the helmet from. AND we get to keep it, wow. So after all of our visits this year, we should be able to line our mantle with busts from Elden’s cute head – yahoo!

After the scan we met with the surgery case manager Wai (pronounced Why) about a few specifics on the surgery. Dr. Jiminez has 4 of these cases tomorrow (including Elden) and we are scheduled last. SO, here is the MEAT of this blog: Elden’s surgery will between 12:30 and 2:30 tomorrow (Thursday). Please raise up the prayers for him at this time. Thank you! We have to be there at 10 am to get things rolling. We went over a specific feeding schedule for him, and what to expect the first 8 – 10 hours after surgery. Another reason to breastfeed - babies can eat up to 4 hours before surgery and also eat right after surgery if they are breastfed. So, the first 8-10 hours will be hard – Elden will be groggy with periods of extreme fussiness and then deep sleep. He will also have swelling and pain. It will be hard to see him like this.

Pat and I sill stay with him throughout the day while Grandma and Papa Tony will be taking care of Aspen (oh yeah Papa Tony got in safe today). THANK YOU for their support, it would be so hard without them! That night I (Jessica) will stay the night with him and hopefully there will be room in the “family room” or Pat. BUT that is on a first come first serve basis so we’ll see.

So, after meeting with Wai, we got into the cupholder bus and had lunch. Then at 1 went back up to wait to meet with the man – Dr. Jiminez. While we were waiting, a nurse and a PA came and got some vitals from Elden. Elden made sure to brighten their day with smiles and sparkly eyes. So, we waited and waited and went a little stir-crazy. Pat went down to get some taquitos which helped. Hooray, hospital taquitos!

While we were waiting, we also got to talk to a family who was from New Mexico. They were there with their son who was 1 yr old and had just finished his helmet therapy. It was great talking to them and learning about their experience. Mother to mother talk in this situation is so helpful. Their son is doing great and you would never know he went through this at 5 months old. She told me that the surgery was nothing compared to the adjustments necessary to the helmet therapy – getting the baby used to the helmet, etc.

Finally it was our turn to see the doctor. Again…last, maybe because our last name begins with a “Y” and it is alphabetical? Afterall, we’re forever Young so we can handle being last.

We felt immediately comfortable with Dr. Jiminez (the guy with the red tie). He is very nice, easy going, appropriately humorous, a father of three, and noticeably passionate about this condition and helping babies. We like him. And crazy as it is, feel at ease with handing our precious one over to him tomorrow. He maintained eye contact while talking to us and took time to answer all of our questions. Elden is a special case – his head shape is not the typical sagittal stenosis shape. But, the procedure will be the same.

He took several more photos of Elden’s head – those are the photos with the blue background behind Elden. The other people in white coats are students – this is a teaching hospital.

After that we were reunited with our family at the house and finished off the day with a few tears (from me of course) and a super yummie cappuccino from Olive Garden. Ahh, comfort Italian food. Thank you God for successfully getting us through another day. I will bring the computer to the hospital with me tomorrow and will post if they have internet access. Otherwise, check us out on Friday or Saturday. Hope you are all well! FINALLY, bed time!! And may the hand of God be on this situation tomorrow and may Elden be surrounded by angels and supernatural healing. AMEN.

Sending a big Texas hug back home

After an early morning in our beloved mountain town, we drove to the Flagstaff airport for the first leg of our trip to Phx – love that! Aunt Jaina brought freshly baked pumpkin muffins to send us off with (thank you Jaina!). We decided the weekend prior to get Aspen one of those “harness backpacks” (read: leash) because of her spontaneous desire to bolt away from us at any moment. This one looks like a cute little monkey hugging her back. A great idea which led to a handful of tantrums as it had to be taken away to run through the multiple security scanners. How do you explain that to a 2 year old? The flights went well and Elden slept through most of it.

Check out Elden’s plane outfit – cute! Aspen was pleasantly occupied by goodie bags from friends Becky, Georgia, and PJ. San Antonio welcomed us with warm humid weather and a sleek white Dodge Grand Caravan with more cup holders than we knew what to do with.

Our first trip was to the hospital so that Pat could donate blood for Elden. Mom, Aspen and myself stayed in the cup holder bus and waited. I forgot to send the camera with Pat to document his experience, bummer!

We then drove to the rental house – which turned out to be a nice house – but – not very clean. This is about Elden, so I’ll save those stories for another blog entitled “Odd things you find at vacation rental houses, and the things you have to buy that should be there”. Anyway, my mother bear mode had me wiping everything down with clorox wipes and washing the bedding. Another day in the place, and it felt like home.

Today (Tuesday) we got up late, had a relaxing morning and then went to the Riverwalk for lunch. We ate some super yummie BBQ and fed the ducks French fries. It was a nice and relaxing time before our hectic day tomorrow (Wed.). Elden had a good time, he is just such a smiley, happy little guy! Papa Tony is coming tomorrow to join us in our adventure. Thanks for reading and keeping us in your prayers. So many things are going through our heads right now, and we are tired! We’ll post more soon.

Travel and Surgery Schedule

Well, all of the plans have been made, and we are flying out of Flagstaff this coming Monday, Nov. 9. We will be in San Antonio for 11 days. We have rented a vacation rental house to be comfortable while Elden is recovering. Jessica’s mom is traveling with us to help with Aspen and Tony will meet us out there on Wednesday. Thank God for the support of friends and family!

Here is our little guy. We got him this soft hat to wear after the surgery, and before the helmet. Here is our schedule for San Antonio

Monday, Nov 9: Fly into San Antonio, arrive by 2 pm. Head straight to the hospital for Pat to donate his blood to be a direct blood donor for Elden. There is a 10% chance Elden will need a blood transfusion during the surgery.

Tuesday, Nov 10: No appts this day! We will do something fun - maybe we’ll go to the zoo!

Wednesday, Nov 11:

10:00 am meeting regarding a study on craniosynostosis

11:30 Elden head scan at Star Cranial Center

1:00 PM. Appointment with the surgeon Dr. Jimenez. We will find out specifics of timing for the following week at this appt.

Thursday, Nov 12: SURGERY DAY! (time to come)

Friday, Nov 13: Anticipate discharge if medically stable. Recovery at the rental house over the weekend.

Monday, Nov 16: Head scan for helmet.

Tuesday, Nov 17: Helmet fitting.

Wednesday, Nov 18: Follow up appointment with Dr. Jimenez at 1:00 PM.

Thursday, Nov 19: Fly home at 2 pm, whew!

Learn more about the procedure

To learn about the doctors and the procedure Elden is going to have click here...

http://www.craniosynostosis.net/

He is having the Sagittal strip craniectomy.

The decision has been made

After a week of praying and researching, we have decided to go with the endoscopic version of the sagittal strip craniectomy. Last week we were in contact with Dr. Jimenez in San Antonio, TX. He and his wife developed an endoscopic alternative to the traditional strip craniectomy. We received an email this morning from Dr. Jimenez' nurse and he agrees with the diagnosis that Dr. Avery gave us last week. Surgery is set for Nov. 12 in San Antonio and we have a lot of travel and logistical preparations to do before then. We will be there for about two weeks for the surgery. Elden will have to wear a helmet for a year after that and we will be making many trips back to TX to see our new neurosurgeon friend.

We have attached a few pics of Elden's Cute Head - these are the mug shots we had to send to TX for the diagnosis (along with the CT scans). Isn't he CUTE!! You can see from the "top" view that his head is growing out in his forehead, and also to one side in the back. His ears are also not placed evenly on the sides if his head. The closure of the sagittal suture is causing this. We think he is fabulously cute just the way he is, but we don't want any potential problems to occur in the future. A hard decision to make for your 3 month old!!!

Thank you for your continued prayers for Elden, our decisions, our financial situation through this, for safe travels, and now for Dr. Jimenez and his team. God is good and He has a plan.

We will try to post as often as we can throughout this process. It is our hope that this site will help to inform friends and family, but might also offer peace and hope to others out there who are or will experience this. Blessings to all. =]