Tuesday

I guess it's up one day, down the next.  Ben isn't feeling so great today.  He didn't sleep well last night so I really think he's just tired but I gave him some motrin just in case.  He is alternating between the couch and our bed.

Monday

Ben had another good day.  He hung out working on Lego projects.  Sometimes he just forgets that he needs to be resting so I have to remind him that he's just not ready for a lot of activity yet because he gets tired easily.  His balance is also off a little from the swelling.  He told me he almost feels like himself again and he told me nothing hurts so he doesn't need pain medication anymore.  It's really been a pretty amazing transformation.

After his first surgery he did well in the hospital but then had a really, really tough time once we got home.  This time it's been the opposite.  The hospital was rough but he has bounced back quicker than I thought he would.  I'm hoping we might be able to venture out of the house a little bit soon.

Sunday

Ben's transition home has been a little bumpy.  I think he thought once he was home life would go back to normal.  But obviously he still has a lot of healing to do.  So today he is pretty tired and I'm glad he is listening to his body and just hanging out on the couch resting.  His face and eyes swelled up overnight again but that's normal.   He says he is not in pain, which is pretty amazing I think.  Dr. K said the next couple of weeks need to be pretty low-key and he can't do any activities (like the swingset or bike riding) that could cause him to injure his head.  After that he can get back to playing but no swimming for about 6 weeks and we have to be really careful to keep his scar covered in the sun for the next 6 months.

Going home!

Ben had a good night and woke up sounding like himself again. Dr. K said we can go home today (although Ben told him he was pretty comfy here).  We are all looking forward to going home and seeing Becca again.

Hi from Ben!

As you can tell, Ben is doing much better. Eating and drinking and walking around.  He enjoyed checking out the view of the Washington Monument from our room. His eyes have even opened a little (he said "it's good to be back").  We are hopeful he'll be discharged tomorrow.

Friday morning

We were transferred out of the PICU late last night and it's good to be in a regular room. Ben was in a deep sleep and slept through the transfer. When he woke up a little while later his eyes were completely swollen shut. He was understandably very upset about that even though we told him it's normal and will go away. He is feeling very guilty about his outbursts the past couple days because they were so uncharacteristic for him and of course he's scared of more pain.  All of this makes for a very sad Ben right now.

I told him our goals for today are to start eating and to get out of bed a little. He is very anxious to go home and we need to start making some progress in that direction.

Thursday night

Ben had an up and down day today.  He had a rough morning but then perked up around lunchtime enough to have a milkshake and play a video game. Then he started going downhill again. He can just barely see out of his eyes so I have a feeling they will be swollen shut tomorrow. We are going to be moving out of the PICU soon.

Thursday morning

Ben had a rough night last night. Medically speaking he is fine but once the anesthesia wore off he became very agitated and upset about all of the tubes and wires. He just couldn't get comfortable and has been begging to go home. The swelling around his eyes and forehead is getting started and he's upset that he feels like he can't see.   The swelling usually peaks on day 4 so we have a long way to go. I'm hoping he can get some lines out soon and we will be moved to the neurology unit where there are more things to see and do.

In the PICU

We have been with Ben in the PICU for a couple hours now. He is mostly just sleeping but has woken up a few times complaining that he doesn't feel well.  He has answered a few questions but doesn't seem to be too aware of what's going on.   His vitals are good but his skin color  is still pretty pale. They will be monitoring him closely throughout the night tonight.

We were able to meet with both surgeons and without going into too much detail, we definitely made the right decision to do the surgery now as there were indications  of intracranial pressure (even though he had no outward signs).

We are really looking forward to his personality coming back. He was excited this morning that we were able to sit on a green bench in the waiting room (green is his favorite color) and he enjoyed watching a toddler who was also waiting for surgery.  

We are really grateful for all the prayers sent our way. Please keep them coming while he recovers.

Update #3

Surgery is just about done. Dr K is just stitching him up. I will post more later after we are reunited.

Update #2

The nurse came by to tell us everything is going well.  They still have a couple hours to go but now they are just putting everything back together. Ben has not had any complications and has not needed a blood transfusion.

Update #1

The nurse just gave us a quick update. The first step of the surgery is taking longer than expected. We knew this was a possibility because of it being his second surgery.  We should get an update in a couple hours.

Getting started

They took Ben back a little while ago. He did great this morning playing on the wii and with his Dad's tablet. Will update when I hear anything.

Almost there

Ben had his pre-op appointment yesterday and he paid close attention to everything Dr. K told him. He has had a lot of questions since then and we've done our best to answer honestly but without scaring him. He has been very attached to Becca today and he is concerned that he won't be able to see her for a few days. They played together in his room and have been cuddled up on the couch with each other watching a movie. He randomly tells her information about the surgery and she just says ok.

I think we are all anxious for it to be over and start getting back to normal. We have to be at the hospital early tomorrow morning. The surgery is scheduled to begin at 7:30.  Dr. K expects to be done between 1 and 2 and then we will be reunited with Ben in the PICU where he will stay the first night.

Background

For those who don’t know, Ben was diagnosed with metopic craniosynostosis when he was a newborn.  He had surgery at 5 months old to remove the fused suture and reconstruct his forehead.  In most cases of craniosynostosis only one surgery is needed.  However, for unknown reasons, Ben’s head has not been growing as it should be.

Ben will be having the original surgery redone on June 22nd with Dr. K (neurosurgeon) and Dr. B (plastic surgeon).  I will share updates from the surgery and his recovery on this page.  We expect him to be in the hospital for about 4-5 days.  Once he is home he will need to take it easy until his incision heals but as long as he feels ok he will be able to resume all activities.