Forty-eight hours

It's been an interesting 48 hours. Here is where we are now:  The surgery was successful but it's taking a little while for Jonah's body to respond to the fontan.  Things are going a little slower than we (me and Katie) expected.  But the doctors are telling us the things that have been going on, mainly him not being able to keep any food down, are not abnormal. 

We are still in the CVICU tonight, Sunday night.  We've been telling ourselves we are OK with that and even though moving to the 10th floor would be good - moving there too soon would be bad.  So we can stay here as long as needed.  And actually Jonah said tonight that he loved it here.  It was random.  I think he was confused.

Yesterday was the worst day since the surgery.  Last night Katie and I were flat out drained.  I think we changed the sheets on his bed three times.  He just wasn't keeping anything down.  He's getting medicine and fluid through the IVs but we're also giving him some medicine orally.  He's used to that because he gets that at home 3 times a day.  He's actually a pro at taking medicine through a syringe and has never had a problem with that at all.  But then after he kept vomiting yesterday he started not wanting to take the oral medicine.  He would vomit right after taking the medicine.  So he thought it was the medicine making him sick.  So all day today I've had to hold his head still while Katie pushes the medicine in his mouth with him screaming the whole time. 

Also yesterday we put him in the wagon and pulled him around the floor. 

Monitors, chest tubes, and everything in the wagon.  It was good for him to get out of the bed and out of this room.  He was kind of glazed over from all the medicine but he said he was enjoying it.  After about 8 laps around the floor he was ready to go back to his room.  Since everything was unhooked from the wall we had him sit in Katie's lap.  It was such a beautiful moment.  The whole day he was unhappy.  He was tired of being in the bed.  He wanted to go home.  He was physically worn out from throwing up so much.  And then I put him in Katie's arms and 3 foot cherub came into our room and winked at me as he brandished a harp. 

OK, there was no harp.  But it was beautiful.  Right before my eyes I was seeing one of our greatest concerns about this surgery being blown out of the water.  We were really concerned that we would lose some of the attachment and bonding that had occurred in the last four months just due to the trauma of the surgery and recovery.  Honestly at one point we asked ourselves if he would even remember us after he woke up.  But it's all been proven to be worthless worry.  As soon as I put him in Katie's arms he stopped crying.  He was so peaceful.  He fell asleep pretty much immediately.  My thoughts at that point were not "he's our adopted son".  They were more like, "My son needs us right now and thank you God that we can comfort him and love him."

I guess one of the frustrating things about yesterday was that even after the wagon and the time in Katie's lap his stomach was still not well.  But after a long afternoon and night he did finally go to sleep and so did we. 

It would be very spiritual if I could tell you I prayed for hours asking God for help and begging him to just do something.  The truth is I was tired and all I said was, "God, please help us.  We need a breakthrough."  I think I am beginning to understand more about how the Holy Spirit prays for us when we do not know what to pray. And I'm also very thankful for people who are praying for us this week.

This morning Jonah slept a good bit.  He got a couple doses of morphine last night and that took some time to wear off.  Then they took another chest tube out this morning and gave him more morphine.  Yay.  So it was kind of a sleepy Sunday morning.  When the doctor's made the rounds today our doctor said the goal was to get him up and moving today.  So we took another wagon ride.  This time we went out away from the unit and into the hospital lobby.  He was OK with it but definitely didn't get that excited.  We also had him walk just a few steps.  Apparently the fontan doesn't really kick in until he gets up and starts moving around.  Thanks for telling me that 5 days after the surgery.  Actually I don't think he could have handled walking before today.

We had him walk from the bed to the wagon.  And a funny thing happened on the way to the wagon.  In transit he needed to have a BM. (ha ha, when have I ever called that a BM..)  Katie and I were both supporting him so he didn't fall.  The nurse was trying to keep all the tubes and cords where they needed to be and keep them from getting hung up.  All while we were trying to get Jonah on an adult sized handicap portable toilet.  I think all the emotion of the previous day got to me and I got the giggles.  Then we all got the giggles.  It was a needed comic relief moment.

After the wagon ride we just hung out in front of the room in the hallway.  We were trying to keep him from going to sleep.  So while he sat in the wagon Katie and I tried to entertain him.  We shot helicopters at each other with this toy that my work friends gave us.  Then we got Miss Charlie drunk by spinning her around and around in an office chair.  She's doing well.  Then I built nothing in particular with some blocks while Jonah looked at me like I would rather be laying in my bed.

Also today, he sat in my lap.  No cherubs or harps but it was a good thing for both of us.

He slept there for a half hour or so. 

We thought we were making big progress today because for dinner he wanted chicken noodle soup.  And he ate it and kept it down.  But only for an hour.  Things were going great.  He was talking and asking for more soup.  We were giving it to him slowly to keep from running into a problem.  Then we were going to get in the wagon again and come back and go to bed.  But as soon we got him up he started getting sick. 

We still took the final wagon ride but clearly with no wind in our sails. 

I still think we made progress today.  Oh, one other thing is tonight they took out another IV.  So he has his right hand completely free now.  Even though he got sick tonight, we did have him up more today and got him moving.  So that was good. 

Here is something awesome: some folks at our church got together and wrote out a lot of encouraging Bible verses on construction paper and sent them up here.  Even though we haven't put them on the wall (because we keep thinking we'll be moving to another room soon) I have read them all and I am very thankful.  Thank you guys.  We are not walking this journey alone.

Friday Update

The last 24 hours have been challenging.  Jonah's been throwing up and dry heaving for most of today.  Some of it is a response to different medicines and some of it is just his body getting used to the fontan.  We're still in the CVICU tonight.  But they are thinking we will move to the 10th floor tomorrow.  That will be a big step.  More tubes will come out and he will be more mobile.  He was talking a lot more today.  At one point he looked at me and said, "I ready to go home, Daddy."  He's definitely getting tired of being in the bed.  He's very interested in the possibility of riding a wagon around the floor when he is feeling a little better.  But today was all about drinking small sips of Sprite and waiting to see what would happen.

We continue to have great nurses.  We've had the same night nurse for 3 nights now and she was exceptional.  We have a different nurse tonight but she's doing really well right now.  Our child life specialist came by again today for about 30 minutes and just discussed how he's doing and how we are doing.  She has been telling us about a few post surgery opportunities for Jonah down the road.  There is a camp he can go to with other "fontans".  There is also a Reunion Day event where families who have stayed in the hospital in the last year can come back and visit with the doctors and staff.  It sounds like a fun event.  They are really trying to make this as pleasant as possible.  The only thing that has thrown us off is this morning I went down to the cafeteria and there were no cinnamon rolls.  Apparently they do not have cinnamon rolls on Friday, Saturday, or Sunday.  All I'm saying is a little heads up would have been nice :)

Katie's Momma Bear sense is in full effect.  You can easily see how the Lord has prepared her for this week.  She is pretty much laying in the bed with Jonah as much as she can.  The surgeon commented about that and said it helps the healing process.  And she's right there whenever he needs anything. 

The Lord is providing here.  I don't know that Katie and I are mentally out of the fog of being in this situation right now.  Jonah needs so much attention right now and it is keeping us busy and in the moment.  But we are being comforted.  We are being fed.  And we are being prayed for.  Many of you are praying for us and providing food and other things.  Thank you.   It is coming through. 

View of the hospital.

The only restaurant in walking distance

Making Progress

Things are going well.  Jonah has been opening his eyes a lot this morning and he's eating jello.  Also when the surgeon came around today he pulled one of the chest tubes out.  So that was good.  He's also been coughing a lot and that is good but you can tell he is in a lot of pain.  Everyone is saying he is doing great.

He asked for ice cream last night but then fell asleep before it was OK for him to have it.  He loves ice cream and it was good seeing his personality come out in that.

When he's been awake and hurting he has raised his hands toward Katie and I while we are leaning next to him near the bed.  He has IVs in both arms so he can't really move a lot.  But I really think he is raising his hands because he wants us to hold him.  We are trying to comfort him by talking to him and rubbing his head and his legs.  It would be awesome to be able to hug and squeeze him.  I can tell Katie is really having to restrain herself.  She's been getting in the bed with him a lot.  Anyway, it was good to see him reach out to us.

Since I've been typing they just took out the neck IV.  He definitely didn't enjoy that.  I was holding his legs down.  I feel like I need to go out in the hall and breathe into a brown bag or something.  I don't know how these nurses do it all day.  He's back to sleep again now.

So we're making progress.  Tubes are coming out.  He's coughing and crying more.  These are all good things.

Here is our room from the hallway.  Note the ice cream cone.

Here is another view of the room.

Breathing tube is out

They were able to remove the breathing tube at 10:30 last night.  He did well with that.  He slept pretty much most of the night.  I think one of the goals today is to get him to eat a little bit.  He woke up a few minutes ago and was really unhappy.  Katie is lying in the bed with him. 

Update on Jonah's bear "Miss Charlie".  She is also breathing on her own now and is ready for some solid food.

Day One update

Surgery-wise things have gone really well today.  One minor issue came up after he was out and that was an air pocket in his lung.  So they put in another tube to drain that.  Right now he is still hooked up to everything that he basically came out of surgery with.  So there are a ton of wires and tubes going all over the place.  They have tried to remove the breathing tube a few times but he’s just not up to the level they want him to be when they do that.  In my mind we can exhale a little bit more when they remove that.

The doctors and nurses at this hospital are exceptional.  They have gone out of their way to make sure we are informed.  And they are taking great care of Jonah.  It is really beyond words how nice and comforting the staff are here.  So thank God for that.

Katie and I have been pretty tense the whole day.  Actually I don’t remember many times in my life that were more tense than today.  I don’t know what else to say about that.  We are still kind of tense just waiting on the breathing tube to come out.  All the doctors are assuring us that everything is normal and I believe them.  But seeing our boy in this condition is overwhelming.

The nurse that took care of Jonah for most of today told us HE was adopted.   And one of the doctors who assisted the surgery was also adopted.  At one point there were more people in the room who were adopted than not.  That is cool any way you look at it.

At a few different times today the nurse would put in for an order of blood product from the blood bank.  That was awesome to be on the receiving end of a local volunteer blood donor.

We are thankful to our parents and Jana who were here the entire day.

This is only day one and it is probably good to remind myself of that right now.  This was the right decision for him and should improve his quality of life.  And thank the Lord this time around he has parents and family who will be here with him and help him along the way. 

He was funny all day yesterday.  He pushed every button on the bed and had it going all over the place.  He did really well even leading up to going back this morning.  He’s a brave little boy.

Update from the hospital - 1

The day is finally here. Yesterday went as expected. They took a lot of blood, put in an IV, did a few chest X-rays, and did an EKG. He did really well. He has been nervous at points. This morning they came and got us around 6:20. We went down with him until they gave him the anesthesia at 7:00. They started the procedure at 8:30. We are doing well. Didn't sleep great but ok. I'm just so glad he doesn't have to go through this without parents. I have planned for this and I will be strong for my baby and get him through this. I kissed him a bazillion times in the past 24 hours and I keep telling him that we love him and God is taking care of all of us. Please pray for his recovery. That he remains calm and understands what is going on. Leaning on Him, Katie

One Week

It is finally here.  We check into the children's hospital Monday.  When we first scheduled the surgery it seemed so far away and all of a sudden it is right here!!

People have asked if he is ready.  Well the answer is "no".  He knows nothing about it.  If he did he would be worrying every day.  Our Child Life Specialist (basically an awesome social worker at the hospital) recommended we tell him 4 days before.  So we will talk to him about it on Thursday.  Then he and I will go to the hospital on Friday and she will explain in more detail and answer any questions he might have.  She will also take us on a tour of the hospital.

Am I ready?  I don't know.  There are definitely times during the day that I just sit and stare at him and wonder what he is going to be like after the surgery.  What I fear the most is that this surgery will change him.  Of course I want it to change him for the better.  I want him to have more energy, more stamina, and hopefully go off the darn water pills.  But I don't want it to change his nature.  I pray he is still as loving and affectionate after this and this does not interrupt our attachment process.  I know that probably sounds like a weird thing to be scared about, but I'm a mom now and I have to worry about something...right?  I'm not worried about the surgery itself.  I'm a little worried about the recovery and how I'm going to comfort him when he is in so much pain.  I'm just praying for God, the ultimate healer, to speak to him in ways I don't understand.

I spoke with our doctor today and here is the basic schedule which could change at any moment while we are there.  We will check in on Monday to the ward (normal hospital rooms).  Then Tuesday we will say good-bye to him at 7:00 for the surgery.  He should be brought to the CVICU (Cardio Vascular Intensive Care Unit) between 11:00 and 12:00.  He will stay in the CVICU for a few days and then hopefully move back to the ward for a week before we go home.  So we are planning on being at the hospital for 10 days.  While we are there we will be updating the blog frequently.  We will NOT be posting anything on Facebook. 

We might post some pictures here.  At first I didn't want to post pictures, but reading blogs and seeing pictures of other adoptive moms who have gone through the same thing has really helped me.  I want to return the favor and help other people who might come accross my blog. 

So since my son will miss out on a lot of summer activities, I decided to try to give him the summer he is going to miss.  We have done a lot, but at the advice of some loving friends (you know who you are) I scheduled in some down time at home.  After all...he really does love that the best! :)

Here is what we have done so far!

First up was a trolly ride downtown (which he LOVED) and his first baseball game.  He was very concerned about the mascot at the baseball game!  He did not want anything to do with him.  He was able to enjoy some of the game though.

Then we met some friends at the zoo on a beautiful day.  As you can see it was a little cold!

Then, on a whim, one day I took him to see the trains on the square.  He really enjoyed going in them.





We also went to the nature center!  It was beautiful.

B took him on the monarail downtown on Saturday and he had a blast!!

Today we went to the Fire Museum and he hung out with his best buddy, Noah!  The thing they are in moved up and down so they could "put out" the fire!  They LOVED it!!







There have also been plenty of trips to the park. 

And the Wii is a big hit!!

Still on the schedul:

The Pink Palace

His first IMAX movie (I hope he isn't scared)

Another trip to The Children's Museum

A trip to see the ducks at The Peabody

And a day at home playing games and eating pizza!!

Please pray that we have a great week and that J stays well so that the surgery can be performed on schedule.  Also pray for his understanding of everything that is going on. 

We have already seen miracles in his life and ours and I know God has big plans for our little boy.

Katie