Big Progress!

Harrison had his chest tube and epidural removed today. He has one more tube that will be removed in about an hour and he will be tube free. Yeah! He may even get to go home tomorrow.

No More Bed!

Harrison got up for a walk reluctantly this morning. He liked the idea of getting out of the room, but not the idea of walking. He begged to be carried. With a little convincing we were on our way down the hall to the play room. He walked great, perked right up and hasn't wanted to get back in bed since.

He took a ride in the stroller to get an X-ray and is enjoying some building blocks. We're gonna have a tough time convincing him to get back in bed.

Recovering Well

Harrison is improving each day.  He is still in a lot of pain, but they are taking good care of him.  He slept great last night, waking only when they came in to do those annoying middle of the night checks.  He cries out in his sleep sometimes, but when you go to check on him he is back to sleeping soundly.  Jeff said that the first night he cried out, "Jackson take iPad" in his sleep.  His brothers are still bugging him!  :)

The boys got to come up to the hospital yesterday evening and see him.  Jackson kept trying to sneak sips of a smoothie that I ordered for him.  Harrison hadn't wanted anything to do with it until Jackson attempted to take some.  He really liked it after that.

He has been up and walking a few times.  It takes a lot of effort for him and he is a little scared, but after today's walk he was the happiest he has been yet. He really seemed almost back to himself for a little while.  He was laughing and playful.  He made us all really laugh when I told him that he could take the yellow sippy cup home with him... he responded with an amazed, "Hooooly cow!"  He's never said that before.  So funny.

Surgery

Waiting and waiting some more was our motto for the week.  Knowing that Harrison was having surgery for those few days and that he was in surgery was difficult.  I also felt the prayers of so, so many and felt strengthened by the Lord. I felt strongly that we are in the right place for him and that we were placed here for this reason.  His surgeon is in the top 1% of the nation for this specialty.  People come to this hospital from all around for unusual cases and he described ours as "unusual among the unusual." We have been here long enough to establish a strong support group and have had more offers to help that we can use.  We are blessed.

The surgery lasted just over 4 hours and the surgeon was able to remove at least 50% of the mass.  When I first heard that number, I was pretty disappointed.  He left quite a bit of tissue that was located in any area where there is risk of causing damage to functioning, healthy body parts. There were two surgeons who painstakingly worked at removing what they could.  On his scans they thought that it was one large mass that they could drain, but once they actually got in there, they found that there was much more solid tissue.  It was formed more like a mound of grapes with just a thimble full of fluid in each sac.  We were reassured once again that it was a lymphatic malformation, which means that it is benign and not causing any problems other than being there when it shouldn't.

Even before going in the surgeon had decided not to remove the area of the tumor that is on his neck because of all of the nerves and vessels that could be damaged by going into that area.  I mentioned that we had noticed his pupils being different sizes on occasion (we had him seen for that in January and everyone seemed to think it was ok as long as they were functioning - it returned to normal).  He said that it was definitely related and that if they had seen that they would have immediately done a chest x-ray to see if there was something in his upper chest/neck area.

One of my main concerns was recurrence. The surgeon said that we would be monitoring him for some time.  He will have scans again in 3-6 months and we will have to determine if anything else needs to be done.  The hope is that it will not.  He seemed fairly confident that it will not grow back enough to merit further surgeries.  That is very reassuring.

I was amazed at how alert he was when we finally got to see him.  He asked for some milk.  He looked so sleepy.  I felt bad that everyone was poking and prodding on him and moving his bed to his new room.  I just wanted to let him rest.  He kept trying to get up.  I was expecting the nurses to encourage him to be still. Instead they said that he could get up as soon as he could get up!  I was pretty surprised to hear that just an hour and a half after this major surgery.  He hung tight to my finger as we got him set up in his hospital room. Jeff encouraged me to go home and get some rest and it broke my heart to do so as he reached for me with what strength he had. Jeff distracted him with SuperWhy and I snuck out.

Of course I am up now, since 4:30, unable to get back to sleep and I would be in my car on the way back if it weren't for the two sleeping boys that need to see their mama too.

Food Funnies

I usually try to use fresh fruits and vegetables and rarely buy canned.  We had to laugh recently when the kids got so excited about a few things that we did buy canned.  Jackson said, "Wow Dad!  You made these peaches just like the ones at school!"  

We found that everyone was very excited about canned peaches.  Who knew?

They also liked the canned green beans much better than the (much yummier) way that we usually make them.  

I walked out of the room long enough to go to the bathroom and found that Harrison had decorated both of his legs with ketchup.  He had already been dressed for church and I had taken off his white shirt before lunch.  I guess I'm grateful that the pants ended up off too!  It made me laugh that he still used the ketchup to dip his food after it was on his leg.

One more story that I wanted to record, which is a little bit food related, happened when I told Lincoln that Harrison was going to be having surgery and be in the hospital for a while.  He said, "Mom, if it is for Harrison, I would even do that thing where you don't eat (you mean fasting?  yes) for 18 days.  If it were for you I would do 19."

And another story that isn't at all food related:  I was helping Harrison choose a Sesame Street character on the internet for a coloring page.  I asked him, "Harrison, who is your favorite person?"  I was expecting "Elmo," but he said instead, "Mom."  (awww)