Post-op and Recovery

In the Hospital

Elias' recovery has been amazing to watch. While in the hospital, Elias was given morphine and Tylenol to help deal with the pain. On Thursday, the morphine dosage was eliminated and we waited to see how Elias would react. The nurse informed us that if Elias needed it they could give him a boost of morphine through his IV. However, the Tylenol helped him with the pain which meant we could go home.

Once Elias was successfully off the morphine, we had to wait for the doctor to give us the thumbs up. Since Elias was no longer hooked up to any machines, we were moved to another room on the floor. We weren't expecting to stay long but we were there for a couple of hours to wait to hear from both the doctor and occupational therapist. According to the initial consultation with the surgeons, we would need a wedge and sling to hold Elias upward while he slept. However, the nurse told us that this policy is changing and we didn't need to have Elias' head higher. By 5 pm, we were discharged and on our way home.

The nurse told us that we can resume normal baby activities with the exception of dunking Elias' head under water. We are to keep his bandages on until we have our follow-up appointment, which is proving harder than expected as Elias likes to grab at them. This morning, Elias' toque and bandages were off. Sean put everything back on his head and they stayed there until he grabbed at them in the evening.

At Home

Elias has been doing really well at home. He was quite bloated after the surgery but has been getting rid of the water quickly. He is also sleeping really well. Last night he slept for around 11 hours straight. Both Sean and I checked up on him during the night. He was lying there breathing so we let him be. I don't expect a repeat of that any time soon, but it was nice when it happened. 

Like I said above, Elias is only on Tylenol, which he can take every 4 - 6 hours. We have had a couple of times where we felt he really needed some pain relief so we gave him some before the 6 hour mark. We want to stay on top of the pain but it seems like he is not needing as much now. 

Nathan

Nathan has been really good with his little brother. We talked to him about seeing Elias after the surgery. We didn't know when Elias would be getting a helmet so we told Nathan that Elias may have a helmet when he saw him next. The first thing Nathan said when he saw Elias was "where is his helmet". Nathan is very careful around Elias. He is quick to tell people that they are not to touch his head.

Up Next

July 3rd - Neurosurgeon follow up appointment

July 3rd - Second Star Scan/Plastic Surgeon follow up
Date unknown (likely this will happen in a week or two) - helmet fitting
In August - genetics testing

This is the only picture I took of Elias outside of the hospital. We were sitting outside in the shade, enjoying the fresh air

Surgery

I'm going to let Sean's words fill in for me today. This was in his Instagram. I don't know how to edit pictures on this program so there is repeat on the pictures.

Here are some pictures of Elias.

Doll outfit?

Elias right after surgery with all the machinery.

Eyes open! 

The God factor

We are so thankful for all the thoughts and prayers that we have received. After Elias' surgery, the plastic surgeon called me to say he was out and heading to PICU. She also said that the surgery went extremely well. As she talked, all I could think about was how God had answered prayer. 

Throughout this journey with Elias there has been amazing moments of God's intervention. I am reminded of how big our God is in moments when we are helpless.  As the old doxology goes "praise God from whom all blessings flow."

Up Next

Recovery 

MRI and Anesthesiologist Appointments

This week has been exhausting. Elias has been feeding every two hours at night for the past couple of nights. Also this week, we had to go to the hospital for three appointments instead of two. 

MRI of the Brain

On Wednesday was Elias' MRI. For the MRI, Elias had to be absolutely still for 30 minutes. In order to get him to do so he had to be asleep. In the afternoon appointment, I tried to get Elias to sleep but wasn't able to. The technicians asked if I would be able to come back after supper and try again. If Elias wasn't able to get his MRI by falling asleep, he would have to be sedated, which I didn't want to do. So we waited for the call and when we received it we tried to keep Elias awake until we got to the appointment at 8 pm. Fortunately, it was late enough at night that we eventually got him to sleep and the MRI scan was successful. The MRI is used during the surgery so it is important that we got it done that day.

Elias had to wear ear plugs for the MRI. His ear plugs were cotton balls stuck on with medical tape. 

Anesthesiologist

Friday was the anesthesiologist appointment. At that point, I still hadn't received any information about the time so I asked the nurse who was checking us in. We officially have a surgery time at 7:45 am, the first appointment of the day.  We are to be at the hospital for 6:15 am. 

The latest I am to feed Elias is 3:45 am. So I will be setting my alarm clock for 3 am to make sure he is done feeding by 3:45 am. If he is still hungry, I am allowed to feed him sugar water until 4:45 am at which he is no longer allowed anything else. 

While at the Friday appointment, Elias was also to get some blood work done. The technicians tried to get some blood but weren't successful. So we went back to the anesthesiologist and she said that they will be able to take him blood work once he is sedated at his surgery. Hurray! No more blood work. 

Questions?

I've had some consistent questions asked when talking to people in person. So for those I don't talk to on a regular basis, here are some questions that you might have.

How long is the surgery?

5 hours and 15 minutes 

How are you feeding Elias while in the hospital?

Right now, I am breastfeeding. I am planning to pump while Elias is in the hospital. Elias has to remain upright (to help with the drainage) and will have a lot of tubes coming out of him so he can't be picked up. I am not entirely sure if he will have a feeding tube or will be bottled fed in the hospital (I'm assuming it will be via the bottle). I have bottled fed him already to test it out (mainly I wanted to see if I can leave Elias at home with Sean while I go out) and Elias didn't have any problems taking the bottle. If for some reason Elias needs more milk than I can provide him, he will be given formula (which is fine with me). 

How long will Elias be in the hospital?

He is scheduled to be there for 5 days. One day in the PICU and 4 days on the ward (CK3).

Are you staying in the hospital?

Yes, although there isn't any beds for parents in the rooms. I will be staying close by so that I can be woken up to feed (pump). I believe in the CK3 ward, there is a nurse who monitors the child so I don't have to stay with Elias the whole time. There is an amazing room called the Ronald McDonald Room that looks like a house (couches, tables and chairs, tv, wifi and computers with internet, sleeping rooms and food). If Nathan was going to be with us, he could go there to play but we will likely hang out there when Elias is asleep or in surgery.

How are you feeling?

Right now, I am fine. I'm not nervous or anxious about the surgery, just tired (as every new mom is). I will be nervous and anxious on the day and likely won't sleep well the night before.

NEXT UP

June 25th @ 7:45 am - Surgery

Eye Exam and Star Scan

We had a very busy day for Elias on Thursday. He had two appointments: eye exam and star scan.

Eye Exam

We arrived at least 20 minutes early to make sure I could find the place.

If you've ever been in Children's Hospital in Winnipeg, you will know that it is a maze! On the floor level, there are three elevators beside each other, each going to different buildings. If you get on the wrong elevator, you can't get to your floor or you are half a floor too high or low. In fact, at least two of the elevators have a front door and a back door with different labels for each level.
I took a tunnel in HSC to get to the elevator, as the tunnels are faster than walking outside. When I got to the elevator it was out of commission due to maintenance.
So my options were:

1. pull the stroller up 8 stairs
2. go back through the tunnels and go outside to the entrance
3. try a different elevator to get to my floor.

So I back tracked to a different elevator, went up one level and walked back over to the elevator just one level up. There was a sign that these elevators were out of commission. Fortunately, a lady at the kiosk, close to the elevators, told me that if I pressed the button anyway, one of the two elevators would open and let me get to the level where I needed to go. Success!

 Once we found the place and checked in, there was at least 5 people called in before us. I couldn't figure out why Elias was not getting called and my momma bear instincts were running wild in my head. However, I did practice my best patience as we waited.

The appointment was very basic. After a short chat, the Ophthalmologist, Dr. Shuckett, tried to get Elias to track an object with his eyes. He was able to do it but not for very long. Then the doctor put eye drops into Elias' eyes. We had to wait for 30 minutes for the drops to dilate his eyes (which is why the others were called in before us as they had already waited the 30 minutes). When Elias' eyes were ready for examination. it was fairly difficult for the doctor to examine Elias as he didn't want to keep his eyes open. Once the doctor was able to look into Elias' eyes he told us Elias is farsighted, which is normal for children Elias' age. Dr. Shuckett said that he will be telling the surgeons that his eyes are fine.

Star Scan

The star scan is a 3D image of Elias' head. He will have to have another one after the surgery. The star scan is to help the helmet makers make the helmets for post surgery.

For the scan, Elias had to wear a little do-rag over his head with a sticker on each temple. He was then placed into a 3-sided glass box and what looked like a scanner light came across and scanned his head. It was very important that Elias stayed still for the scan as any little wiggle will make the image blurry. The picture is immediate and I wish that I would have asked to take a picture of the scan. I did glance at it but didn't think to ask to take a picture.

Fortunately, Elias was fairly sleepy for the scan and we only had to try it twice.

The helmet maker, Amanda, told us that Elias' helmet will be clear so that his incision can be seen from the outside.

#crazyhairdon'tcare

Our little gangster

just laying down some rhymes

We haven't received any further information about the exact time that Elias will be having his surgery but am assuming that it is on the 25th still. I asked one of the nurses at Elias' star scan about the time of the surgery and she checked into it. Apparently, it is the neurosurgeon's office who does all the scheduling. The nurse asked her contact to remind the neurosurgeon's office to mail out the letter of the surgery date and time. We will be waiting patiently by the mailbox. 

Prayer request

Please pray that the date of the surgery stays the same.

Next Up

Wednesday, June 19th - MRI

Friday, June 21st - Anesthesiologist appointment

Tuesday, June 25th - Surgery 

Immunization shots and pre-op paperwork done

Two Month Immunization and Check-up Appointment

On Thursday last week, we visited Dr. Feierstein's (pediatrician) office for Elias' two month appointment. He weighed 12 lbs 8 oz. He got his immunization shots and is hitting all the developmental milestones for his age. Dr. F wasn't concerned about Elias' development.

We were able to take a little time to talk a little about the surgery and expectations of it during Elias' appointment. Dr. F mentioned that Sean and I should talk about who will take care of Nathan while Elias is having surgery as the hospital is not fun for 3 year olds. Fortunately and frankly God's perfect timing, Nathan will be hanging out with my parents and nephews for the week that Elias is having surgery. For the second year in a row, my parents are braving the chaos of having 3 children under 5 camping in a trailer. Nathan has been looking forward to this trip for a long time. Almost every time we call Grandma and Grandpa, Nathan asks when is he going camping with them. He is so excited to go as he has already started to pack his toys that he wants to bring camping!

Before Pictures

I thought I would include a couple of "before" pictures of Elias for those that don't see him very often. I tried to capture the length of head for you. Once you see him in person, it is more obvious.

Side view of Elias' head. The forehead is starting to protrude. If we didn't have the surgery, the forehead would continue to grow. Right now, Elias' cheeks are chubby so the proportion of his head is not as obvious in the picture.

Top view of Elias' head. His head is long and narrow. 

2 month old picture. He is bigger than his bear.

Schedule

Our schedule is getting busier as we approach the surgery date. Here is what we have coming up in the next several weeks.

• June 13th - Eye Exam. I believe this is to check for pain. No one has explained how they can figure out if Elias is in pain by looking into his eyes but they can. 
• June 13th - Star Scan (I was wrong about what this is. It is not an MRI. It is a scan of the exterior of his head. The scan is used for helmet fitting.)
• June 19th - MRI Scan. The MRI is done to help the doctors during surgery.
• June 21st - Anesthesiologist Appointment
• June 25th - Surgery. No time set.

We are waiting to hear from the genetics department as well as child development department. These appointments are not as urgent which may be the reason we haven't heard from them yet.

Surgery Date and Star Scan

I want to thank you all for reaching out after I posted my last post. I didn't realize how many people I didn't tell about Elias' condition. Sean and I really appreciate all the support and prayers. 

According to sickkids.ca, 1 in 5000 children have sagittal synostosis when they are born. I have talked to two people already about how they know someone whose child had craniosynostosis. I hope to connect with a parent to gain their perspective on what happened to their child as they went through surgery and post-op. It is a lot less scary knowing that others have gone through the same situation with successful results.

So we have a date. June 25th is when Elias will have surgery, assuming he doesn't get bumped by someone else. I don't have any more information about the surgery yet besides a little pamphlet I received in the initial appointment. We are expecting to get more information mailed to us to explain what will be happening. 

 

Elias is also going to have a star scan on June 13th. I'm not entirely sure what type of scan it is. It might be an MRI. The star scan will take a picture of his head so that the doctors can have a precise image of his head before surgery. 

We have experienced a star scan before. Nathan had a star scan done on his head when he was around 6 months. Nate favoured one side of his head and developed a flat spot on one side. He had to wear a helmet for 6 months. In order to make sure the helmet fit, he had a star scan. What I can remember from the scan was that Nate had to lie very still and the room was fairly dark. The technician/doctor had this weird flashing light that was used to distract Nate and help him to look at the proper place. It was fairly stressful trying to make a child lie so still. From what I remember, I think Nate did fairly well lying there.

Once Elias is healed from his surgery, he will have to have another star scan so that they can compare the before and after and (I believe) to make a helmet. So we will have another child that wears a helmet. Unfortunately, we don't get to pick a fun print for the outside of the helmet like we did with Nathan. I was already told that Elias' helmet will be white. Elias, like Nathan, will have to wear the helmet 23 hours a day, every day. The helmet doesn't hurt as it doesn't put pressure on the head. Instead, the helmet allows for the head to grow in the areas where it needs to fill out. 

Here is Nathan wearing his helmet. The helmet is open at the top of his head and held in place with a strap on the side. His helmet is hard on the outside and foam-like on this inside.  I imagine Elias' helmet will be different. 

We've had several people ask us how we are doing. I never really know how to answer. Initially, we were in shock.  We have definitely questioned ourselves with why this would happen. At this moment, I would say that we are at peace with the idea of Elias having surgery. I am able to explain the situation to people without crying. As we get closer to the date and proceed with appointments, I think we will get more anxious about everything. I still have a lot of questions that will be answered in time. Honestly, I wish we could get the surgery as soon as possible. Waiting is the hardest part. 

So for right now, we are hanging out and enjoying Elias. Today, he looked right at Sean and gave a huge smile! I tried to get a picture of his smile but he would not perform for his mom! I'm going to have to go on stealth mode to get it.

Psalm 46:1 - God is our refuge and strength, a very present help in trouble.