Welcome Back Isaac

 I think Isaac's room is the happiest room in the Unit.  Between the Well Wishes Wall, the Toy Shelf, and the lit up Christmas tree, there is happiness every where you look.  The medical staff all comment on his happy room when they come in.

All of this happiness is not the result of anything I have done.  Rather, it is evidence of the immense support that we feel from all of our friends and family members.  Your love is literally surrounding us here.

Yesterday we had a major breakthrough:  Isaac had real phone conversations with his dad.  He refused to speak to me or anyone else.  He would ignore everyone that entered his room.  He would not smile, nod, nothing.  But then Jeff called.  I said, "It's daddy.  Say 'Hey dad,'" and then I held the phone up to his ear.  And just as though everything were normal, Isaac said, "Hey dad!"  I, of course, started crying again.  After Jeff and Isaac talked for a minute, I put the phone back to my ear and Jeff asked, "Where did that come from?"  I don't know where it came from, but I was willing to take it.  I knew then that Isaac was really in there somewhere. 

 Later, it happened again.  It was as though the phone was a safe place because he didn't have to look at anyone.  His dad is a safe person because he isn't associated with everything here at the hospital.  Not every time, but most of the time when Jeff would call, Isaac would talk to him.  As soon as they hung up, Isaac was gone again.  Refused to speak.  Refused to smile.  Refused to respond. 

After his chest tube placement yesterday, he had an incredibly hard time getting comfortable.  He would roll around and around tangling all of his leads, monitors, and tubes in a huge mess.  We were both so frustrated and could not sleep.  I ended up on the foot of his bed holding his feet while his arms were tied to the bed.  Not my most pleasant mothering moment.

 With a new day comes new hope. This morning I got out Isaac's Lego Advent Calendar (thanks Grandma!!) like I do every morning.  Only today he showed some interest in it.  His fine motor skills are still pretty shaky, but he tried to put some things together and was interested in opening the little boxes.

Since he was constantly ripping it off, and they had been weaning him from oxygen support, I asked the nurses if we could start room air trials.  They turned his oxygen off early this morning, and he did great.  You can see how effective his nasal cannula was at this point in the photo.  We were thrilled to have one less tube to worry about

 Soon we were off on a field trip to another procedure.  There was some concern that Isaac's minor heart murmur that he has had for years might be problematic, so he underwent an echocardiogram.

 Another scan, another procedure, another strange room, another scary machine, another stranger talking to him.

When we got back from the echo, Isaac was once again pulling at all of his tubes and monitors.  We put the restraints back on.  His feeding tube started beeping so I untied him from the bed to straighten out the tube.  When it kept beeping I stepped out of the room to tell the nurse.  Before I knew it, Isaac ripped the feeding tube out.  And then, as if someone had waved a magic wand, Isaac was back.  He started smiling.  Then he started giggling.  And then, he spoke.

 He told me he was hungry so I gave him some apple juice and goldfish crackers, which he willingly ate.  I could hardly believe what was happening.  It was as though we had been working on letters A and B for two full days and then we skipped all the way to M in 10 minutes.  I told him how handsome he looked without all those tubes and monitors on his face and he wanted to see.  I used the camera on my phone as a mirror and he just kept looking at himself and smiling.  So did I.

 When the nurse came back in to reinsert the feeding tube, we stepped out into the hall.  I begged her to call the physician and ask if we could please give him a chance to eat.  I knew that if we held him down and shoved that tube back inside of him, he would retreat again and be gone.  I knew that the doctors were worried about his stomach being able to handle a normal diet after having not eaten for 11 days.  I knew that they were concerned about nutrition and caloric intake since he had been on mandatory fasting for so many procedures.  But I also knew that inside that room was the kid I had been waiting for all of this time, and I didn't want the feeding tube to change that.

The doctors said yes, and let us give it a try. 

 Well we didn't have to try very hard.  Isaac was ready to eat and get better.  He had no problem eating and drinking, and smiling and laughing.  He seemed almost normal when his siblings and cousins arrived for a visit tonight.  He kept saying, "Titus!"

 We took Isaac down to the cafeteria for the first time so we could all eat together.  He loved it.  He was so adorable as he interacted with the kids and sat up all happy in his wheelchair.

 Isaac couldn't stop smiling throughout their visit.

Today has been the best day we have had in the hospital up to this point.  Isaac still has a long way to go.  His chest tube is still draining.  His inflammation levels are still significantly high.  He still has difficulty walking.  He is still being followed closely by the surgical team, the infectious disease team, and the attending MD team on the floor.  After what I saw today, though, I know we are well on our way to getting better.

Over and over again as I have sat at Isaac's bedside and talked to him about the people that love him, I have been reminded of the eternal significance of families.  Tonight as we observed Isaac's reaction to his siblings, aunts, and cousins, the profound role that families play could not be denied.  "God gave us families to help us become who he wants us to be.  This is how he shares His love, for the family is of God."