Kid President

Have you heard of the Kid President?  I haven’t seen all of his work, but this tribute to moms is great!

I love the quote: “Our house is awesome cause we live in it!”

I hope that’s true for my house.  I hope my family feels this way about the home that I want to create.  A home that my family longs to be.  A place that they think is AWESOME!

Surgery: Photo Gallery

Here are pictures from the day of surgery (before and after the surgery):

1. A side profile shot

2. Front shot (the owie on his nose isn’t related to surgery, but in learning how to keep up with faster cousins)

3. Shot above the ears – you can make out a bulge where his brain was already starting to grow out.

4.  In the pre-op waiting room.

5. In the play center waiting for surgery.

6. “Playing” with the masks to see if he had a preference

7. After surgery as we got to the PICU.

8. Cuddling with mom in the PICU.

9. Sleeping.  No swelling that I could see.  No bruising.

These are pictures from the first & second days after surgery:

1. Being held by dad.

2. Being rocked by dad.  Most of the time in the PICU, he didn’t wear anything but a diaper.

3. Being held by mom.  Still no real swelling that we could see.

4. With the bandages off.  Kind of bloody since we weren’t able to wash his head yet.  This is when we started to see some swelling start.

5. The incision, pre-cleaning.

6. The incision again.

7. Being held by mom on day 2.  Still very sleepy.

8. Being held by dad.

9. On the 2nd day after surgery, starting to feel better.  I tried to make him a little “fort” inside his hospital crib.  He liked it a little bit.

These are days after being home.  From Day 3 after surgery to almost 2 weeks post-op:

1. Side shot of the incision on day 3 after surgery.

2. Day 3 after surgery.

3. Day 3 after surgery.

4. Day 4 after surgery.  This is when his swelling was the worst.  His face looks puffy, but not nearly as bad as I had feared.

5. Day 5 after surgery.

6. Day 5 after surgery

7. Almost 2 weeks after surgery, from the front.  The “owie” under his eye isn’t connected to surgery – just being a little boy.

8. Almost 2 weeks after surgery.

9. Almost 2 weeks after surgery, doing his new habit – the pouty face.  Not sure why he does it.  He does it when he’s happy, when he’s sad.  When he’s walking around.  When he’s just sitting. It’s his new thing, I guess.

Surgery: Recovering At Home

See this page for all of the posts related to our journey with craniosyntosis.

We’re Home!

Once we got home, things got much better.  Except for his swelling.  The doctors and nurses had warned that the swelling should be the worst on the day that he got his bandages off.  Instead, it was a couple of days later that we really noticed the swelling.  But you know what?  It wasn’t bad.  He kind of looked like he had a bad facelift and weird cheek implants.  It was gone though within a couple of days and never got so bad that his eyes swelled shut (which is a possibility).

He wasn’t napping like normal.  I think he took 4-5 naps the first 2 days home.  Each was about 45 – 60 minutes.

He didn’t sleep through the night (and still isn’t a week later) like he had before surgery.  In the beginning, I think it was pain related as he’d wake up 2-3 times a night, about every 4-5 hours.  We’d give him the pain meds and a bottle.  Even then, it took a 30-45 minutes of cuddling before he went back to sleep.  I debated waking him up to give him pain meds, but in the end, I thought that’d be more disruptive to him than him waking up on his own.  I’m not sure if I made the right decision there.

A week later (as I write this) and he’s still waking up once at night, but I don’t think it’s because of pain anymore.  He just takes a bottle, some cuddles, then he’s ready for bed again.  I think his sleep patterns are still a little off.

After a couple of days, I took him off the prescription pain meds.  He never broke out in hives or anything to give a clear indication that he was allergic, but he itched his nose constantly.  He’d find any surface that he could and rubbed his nose against it.  Since the doctors (and the pharmacist) said to transition him off of it when I thought he was ready, we did.  It went well!  We actually gave him Children’s Ibuprofen and it seemed to take away his pain just as well as the heavy duty stuff, without the nose rubbing and without making him so sleepy.

On day 6 home, I stopped pain meds completely.  He was going longer and longer between doses and it seemed like I was giving him the medicine just because the clock said to.  If he would’ve shown signs of pain, I certainly would have given him another dose.  But he was fine.  I might have been able to stop it sooner than day 6, but with a 1-year-old, it’s so hard to tell.  It’s such a guessing game at that age.

Surgery: Recovering in the hospital

See this page for all of the posts related to our journey with craniosyntosis.

Day 1 Post-Op

For the most part, things just continued to get better after that first night.  For “breakfast”, we gave him some applesauce and apple juice.  He didn’t eat much – just a few spoonfuls, but we were testing the waters to make sure he didn’t throw up any more.  He didn’t.

Throughout the morning, we’d offer more juice and they kept him up on his pain meds.  His head was still wrapped and we still hadn’t seen his incision.  For “lunch”, he had more applesauce and some mandarin orange slices.  He didn’t have the energy to feed himself, so we had to put the slices directly into his mouth.  Gladly done!

He still slept quite a bit, but was starting to be awake more and interact with us.  That morning, we were visited by each of the surgeons, an anesthesiologist, the nursing supervisor, and the ICU attending doctor.  Plenty of visitors!

In the early afternoon, they said that he was ready to go to a regular floor, so they started prepping for that.  That meant the heart monitors came off, all but 1 of IVs came out, the catheter came out (that was an uncomfortable process for him as it got ‘stuck’ coming out!) and the ART line was removed.  His head was still bandaged and they kept in the IV in his foot just in case it was needed later – it wasn’t actually connected to a machine or anything.  It was nice for those tubes to come out – made him a little more mobile!

When we got to the regular floor, we were introduced to our nurse and her assistant.  He was supposed to be on the monitors still, but the monitor in his room wasn’t working, so she left him off of that until they could get it fixed.  He was still quite clingy, so he slept on me for most of the afternoon.  We had some visitors, but Phinehas didn’t show much excitement.

That night wasn’t too bad.  On the regular floor, they take vitals every 4 hours instead of every 2, which was nice.  We got a little more rest.  Again, Jeff took the couch/bed and I took the recliner.  The nice thing about a regular room is that it has its own bathroom, so we were able to shower.

Day 2 Post-Op

Things continued to get better on Day 2 after surgery.  The plastic surgeon, Dr. M, visited that morning and took the bandages off Phinehas’ head, so we got to see his incision for the first time.  Not as scary as I thought it would be!  No bruising.  No major swelling either.

They were concerned about his bloodwork.  His hemoglobin counts weren’t as high as they should be, so they wanted one more day in the hospital to monitor those.  If they went too low (below a 6), then he might need to get a blood transfusion.  He was at a 6.2.  This day, he showed a lot more energy – started feeding himself and holding his own bottle.  Jeff even took him to the playroom that’s on the floor to play for a little bit.

Day 3 Post-Op

They did one last blood test and although his hemoglobin went down to a 6.1, they felt that it was high enough to go home and that he wouldn’t need donated blood.  We left mid-morning with instructions:

• A prescription for oral pain meds.  The same thing he’d been taking in the hospital.
• A prescription for oral antibiotics. Again, the same thing he’d been taking in the hospital.
• A “cream” (more like Vaseline) to put on his head once a day after a bath or before bed.  Helps the scar to heal.
• Permission to move him off the prescription pain meds onto Children’s Tylenol when we thought the time was right.
• Give him a bath daily, but don’t “dunk” his head under water.  We could pour water onto the incision and rub near the incision, but not actually on the incision.

That afternoon, he just crashed.  Slept for 3 hours straight.  And even then, he was awake for 45 minutes, then went back to sleep.  I think he was making up for lots of lost sleep in the hospital.

Surgery: Operating Day!

See this page for all of the posts related to our journey with craniosyntosis.

Our surgery time was at 11:30 a.m., so we had instructions to be at the hospital at 9:30 to give time for all the pre-op stuff that had to happen.

Pre-Hospital
Phinehas could have his last solids (either a bottle or baby food) at 5:30 a.m.  So, I woke him up at 5:15 to give him a bottle.  He took it and went right back to sleep, waking around 7:00 a.m.

When he woke up, we played a bit, then gave him a bath.  The hospital recommended that because it might be a few days until he would be able to take another one after surgery.  Luckily, he likes baths now, so this was essentially play time for him.

We played the rest of the morning, occasionally offering him water and apple juice, which he could have until 9:30.  He isn’t a big water drinker and wasn’t very hungry, so he didn’t take much.

Pre-Op
We finished packing and left home around 9:00 a.m.  The hospital told us to bring any favorite, comfort items that he might like.  So we grabbed his blanket, even though he doesn’t carry it around with him or anything.  It’s the closest thing to a comfort item that he has.

We checked in at the Check In desk.  Jeff & I both got hospital wrist bracelets that matched what they’d put on Phinehas later.  The one thing that surprised me is that the hospital asked for a deposit for the surgery.  I’m guessing that this is because our insurance has a fairly large deductible (it’s a HDHP) that we’ve barely tapped into this year AND because surgery is expensive.  I asked what is common and they said $250, so that’s what we paid.  It wasn’t a big deal for us because we knew that our deductible is 10 times that AND because we have a HSA that it was coming out of.

They took us back into the pre-op waiting exam room.  Jeff’s parents got there about that time, but only parents were allowed back in the room (it’s small).  There, we met our nurse for that part of his care.  They put him into a little hospital gown, took his vital signs and some medical history.

The worst part of that phase was taking blood for the bloodwork needed.  Jeff & I held him down, while the nurse tried to get blood from one of his arms.  She found the spot, but he didn’t bleed well at all.  Blood came into the needle thing, but didn’t go anywhere.  Strange.  So we had to start all over (poor guy) with the other arm, which worked like a champ.  A band aid and a hug later and we were okay.

Since we were at Children’s Hospital, they have a little play place that kids can go to while waiting for surgery.  So we headed there and played with toys.  He thought that was fun.  Occasionally, the nurse would come to get us as we had several people to talk to:

• 2 different anestheologists came to talk to us and get history about Phinehas and even Jeff & I on how we’ve previously handled surgeries.
• Each of the surgeons stopped by.  The neurosurgeon marked his head with a blue marker (which is still kind of there a week later!)
• A Child Life Specialist, who normally helps kids feel more comfortable with the big scary hospital.  With a 1 year old, there isn’t much to do.  She did give him 2 face masks to play with – one bubblegum scented and one strawberry.  The goal was to see if he had a preference.  He didn’t.  He chewed on both equally.
• The operating room nurse stopped by as well.

Surgery
They were running a little late that morning with the surgery before ours, so they didn’t come to get him until about 12:00 Noon.  Taking him away was kind of uneventful.  We gave him a hug and placed him on the gurney and they wheeled him away.  He smiled the whole time as he didn’t think much of it.  He’s at that age that, for the most part, if you smile at him, he’ll smile back even if  he doesn’t know you.

Jeff & I went to the surgery waiting area.  By that time, my mom got there, so the 5 of us went to the hospital cafeteria to grab lunch.  Periodically, a nurse would come in to let us know the status:

• They’ve got him asleep and he did great
• Surgery just started
• Surgery is going well
• They’re closing up now
• He’s in recovery
• He’s woken up (and then later fell back asleep!)

Post-Surgery
Surgery itself took less than 2 hours (we were told to expect 2-3 hours), but it was only supposed to be 30-45 minutes after surgery until we could see him.  It ended up being 1.5 hours until they were ready for us.  That was mostly because they don’t have parents come back to the Recovery room.  Instead, you meet them in the hallway on the way up to the Pediatric ICU floor.  So, I think we were really waiting for an ICU room to be ready for him.

We met him in the hallway and he was still sleeping. His head was bandaged and he was covered by his blanket.  All in all, I thought he looked great compared to what I had feared!

We rode up to the ICU floor and into our room.  It was at that point that he woke up as they were transferring him from the wheelie bed to his crib.  He saw me, started crying and held out his hands.  They helped me pick him up (watching for all the tubes) and I just held him chest-to-chest.  We stayed that way for quite a bit.  He’d wake up occasionally, give a little cry, then fall back asleep.

Jeff went down to get the rest of our family.  The grandparents saw him for a bit, then left to give us a chance to get settled in.

I was surprised at all the tubes in him.  He had:

• A catheter (which I thought odd because they still had him in a diaper!)
• An ART line (I think it’s called – it’s basically an IV, but in his foot as it feeds directly into an artery instead of a vein.  The main benefit of that one is that it feeds into a monitor that can track blood pressure real-time.)
• An IV in one of his arms.
• An IV port in one of his feet.
• Two heart monitors on his chest to measure his heart rate.

After a while, Jeff & his parents went to grab dinner, bring me back some and get our bags from the car.  Normally, only 1 parent can spend the night at the hospital, but they were okay with both of us.  I slept in the recliner chair and Jeff slept on the couch/bed.

The First Night
After he had been awake for a while, we gave him some water to see how he tolerated that.  He did well for a while, only taking a couple of ounces.  About an hour later though, he threw it up.  So they ended up giving him some anti-naseau meds, assuming it was because of the anesthesia.  Never happened again, so that’s probably the case.

Hospitals are well-lit and loud.  And the nurses are nice, but annoying.  In the ICU, they wake you up every 2 hours to take vitals, take blood, give pain meds or anti-biotics.  Since he was hooked up to alot of machines that automatically measure things, they really just needed to take his temperature, which he hated and give meds.

The machines beep alot when levels go down or up too much, which happens for a variety of things. His blood pressure goes up when he stirs.  His pulse goes up when he moves.  I think I woke up every hour, so it wasn’t a restful sleep.

But we made it through the night!

Surgery: What to take to the hospital (and what not to)

See this page for all of the posts related to our journey with craniosyntosis.

Here are the things that came in handy for us at the hospital:

• His blanket
• Formula – at first, they gave him ready-to-drink-because-its-already-mixed-up Similac formula, but really, it was easier to just make our own bottles that he was used to at home.  The nipples that they had for those bottles are low-flow for infants and Phinehas was way beyond that!  Especially as he started “eating” more because the ready-to-go bottles are only 2 ounces.
• His favorite books to read with him
• Our clothes and toiletries – we forgot shampoo & conditioner, which was a little annoying.  They had towels and washcloths and all that.
• A camera
• Cash.  For the hospital cafeteria.  For going out and grabbing something.  My co-workers loaded us up on gift cards and that was super nice since it was all to places near the hospital.

What we didn’t need:

• A fully stocked diaper bag.  Particularly on operating day.  He can’t have any food or even liquids until after surgery.  They had plenty of toys to play with before surgery.  They have all the diapers you’d ever need.  It just became this big bag that we had to carry around.  I guess, it was nice for carrying our camera.
• Diapers.  They gave him his own pack.  Weird and I’m sure we’ll pay for it somehow, but we didn’t use a single diaper that I brought.
• Clothes for him.  He stayed in a hospital gown most of the time.  And the PJs that I brought for him (because they zip up and don’t need to go over his head) had feet on them, which wouldn’t work because they needed access to the IVs and such.  In fact the first day or two, he was just in a diaper and I covered him with a blanket while I held him.

Surgery: Ins & outs & the process

This post is my attempt to document the process we went through in diagnosing craniosyntosis and getting surgery scheduled.  Note: Your process will vary.  You have a different pediatrician.  You have a different insurance company.  You have a different hospital.  You have a different surgeon.  This is just what we went through.  See this page for all of the posts related to that journey.

Suspecting Problems

At Phinehas’ 6 month check-up (October 2012), his pediatrician (Dr. A) noticed that his soft spot was gone already and had concerns about the shape of his head.  He sent us to the hospital to have a skull x-ray done.

The x-ray results came back normal, but the pediatrician still had concerns.  We made an appointment at the Helmet Clinic, but that was still 2 months away.

In the meantime, Dr. A sent us back to the hospital for a CAT Scan in November 2012, which I was worried about, but turned out to be not a very big deal.  The radiologist diagnosed craniosyntosis and the hospital gave us a CD copy of the scan.  (It’s actually really cool to look at.)

Because the radiologist had a diagnosis, we canceled our appointment at the Helmet Clinic (still not sure if that’s the right move to make).  Instead, we made an appointment directly with a neurosurgeon.

Confirming the Diagnosis

In January 2013, the neurosurgeon examined Phinehas, read the radiologist’s report and looked at the CD himself and confirmed the diagnosis.  In addition, that’s when we learned that surgery had to happen.  A helmet wouldn’t unfuse the bones and cause the head to grow in the right direction.  Actually, we didn’t have to have surgery as this isn’t a fatal condition, but he could (no one knows) start to have brain growth restriction and his head shape will only continue to grow in a triangle-like shape from his forehead out.  He operates with a plastic surgeon who has a specialty in craniofacial surgeries, so we made an appointment with him as well.

We met with the plastic surgery, who confirmed what everyone else had said.  His office is connected to Children’s Hospital, so they were the schedulers.  The scheduling part was very frustrating!  Either I didn’t ask good questions about the process or I didn’t understand the answers because I thought we’d be having surgery in 6-8 weeks.  In reality, it takes 6-8 weeks for them to start processing his case (because they’re just so backlogged) and THEN they’d assign a date.  That was frustrating.  At one point, the insurance company told us the date was March 28th.  Later the surgeon’s office told us it was May 2nd.  Sheesh.

Getting a Second Opinion

The good thing about having a Children’s Hospital in your town is that you have people here that do the surgery.  The bad thing about having a Children’s Hospital in your town is that every other hospital in town refers you to the same person – the same person we’ve already heard from!  We tried to get a second (third?  fourth?) opinion from a hospital in Kansas City, but they lost the CD we sent them.  Eventually, I got a neurosurgeon from the Medical Center here in Omaha to see us, view the CD and confirm the diagnosis.  He confirmed it, and so we were comfortable that surgery was needed.

Insurance Approval

The surgeon’s office took care of all of this for us.  Eventually, we got a letter from the insurance company stating that it was approved and that’s all we needed.  We have a High Deductible Health Plan, so we knew we’d be paying plenty out of pocket, but that’s where our HSA was going to come in handy.

Pre-Op Appointment

Before surgery, Phinehas had to do a pre-op appointment with his peditrician.  Since surgery was just after his first birthday, his 1-year check up doubled as a pre-op appointment.  They just had to send a letter to the surgeon’s office with brief medical history and stating that he was in good health.

Surgery

In May 2013, we finally had surgery!