Early Parole

Eliah is being discharged TODAY. They said they normally keep kids 5-6 days after getting a port, but he is doing so well, and they trust me to manage him at home, so we are leaving in an hour(ish). YAY!!

I will need to give him a large dose of clotting factor twice a day for the next several days, then go to once a day.  By next week, he will be back on a regular schedule, and hopefully all healed up.  

You would never know he had surgery

The Surgery

Before Surgery

Heading into OR

 

 

 

 

 

 

 

Recovery Room

 

 

Eliah's surgery went well.  The same doctor that did his original port was the one to put this in place.  He said that Eliah's tissue looked really good, and he was able to put a new one in the same side.  The doctor said that the port is a little larger and should be able to grow with Eliah a little better.  But I'm sure it will take some getting used to. 

Eliah was anxious and upset before going in.  He didn't sleep all night due to the doctors and nurses entering the room, and numerous needle sticks to check clotting factor levels.  The good news is, Eliah's levels remained high and acted no different than anyone else having surgery.

He is resting calmly now with Morphine, and has even eaten a little bit.  He seems to be okay for the time being.  I will update more as he recovers.  Thank you so much for the thoughts and prayers.  We ALL appreciate it.

The Port Images....and leak

The first image is what Eliah's port looks like.  It has a catheter that runs through his main artery to his heart.  The second image shows the tiny leak in the top of the catheter, where the bend is.  It's minute, but it's there nonetheless.

Unexpected Surgery

I am glad that I know Eliah so well.  He's had his port for over two years now, and I've been doing his shots five days a week.  I feel like I know what to expect and how he responds.

Friday's shot went bad.  There was blood everywhere, Eliah was screaming, and I even had to hold him down with my knee to finish it.  Sunday came and I was nervous about doing the shot again.  Same thing happened.  So I called the doctor on Monday.

I took him to the Hematologist so they could do his shot and take a look at his port.  It was like a car that makes noise until you get to the mechanic.  It went smoothly.  He didn't scream, and there was no issue with the needle.  But to appease me, they ordered a Portagram (xray of his port with dye contrast) for today.

They took the xray and did discover a tiny leak in his port.  Had it gone on longer, it would have damaged the tissue in his body.  It has to be replaced.

We have to bring him back to the hospital in just a few hours to be set up in a room, and surgery will happen tomorrow.  With Hemophilia, he will have to be on a constant drip of his clotting factor during surgery so he doesn't bleed to death.  Hopefully, Eliah has not developed inhibitors to his clotting factor (immunity). That would be a worst case scenario.

What I'm worried about is where the port will be located.  It's possible that it will go in the same spot he currently has it.  But if they can't, the port may have to be placed on the other side of his chest.  In that case, he will have two incisions, one on each side of his chest.  I am already sick to my stomach over the pain I know he will be in.

I will post the xray when I get a copy.  And I will update as I can.

Forwards....Backwards....Sideways...in Circles

I am coming full circle (again) with my feelings about Eliah and his progress.  It seems as though the good always outweighs the bad, but there is always something new on the horizon to complicate Eliah's situation.  We get two steps forward, one step backwards, and a couple to the side.   And I feel like I need to write this blog post, not just as an update on Eliah, but as a release for my feelings.  I'm frustrated.

In the past month and a half, Eliah has had two seizures.  Normally we are taken by ambulance to the ER for them to stop the seizure.  But these past two times, Eliah has stopped within five minutes.  We still call an ambulance, and we give him medication and put him on oxygen, but he came out of the seizures each time without going into another one.  That is HUGE progress.

The bad part is, in the past month and a half, Eliah has lost a lot of his motor skills.  He has a great deal of difficulty when rolling now, sometimes not even rolling at all.  He is only able to use his left arm occasionally.  He has not even been able to bring his hand to his mouth, as he has for the past 2+ years. 

This past February, I posted a video of Eliah using a talk box in therapy.  He presses a large button to play a recorded message.  He's been doing that for a year now.  Unfortunately, just in the past month, he has lost the ability to reach and press the button.  You can see in his eyes that he wants to, he just cannot get his body to move.

In addition, Eliah's muscle tone has increased.  His leg muscles are getting extremely tight, and he is developing what's called "wheelchair legs", where he cannot straighten his legs while in a sitting position.  This will hinder his ability to stand.

Eliah has also lost the ability to wear his orthodics (magic shoes), because just wearing them leaves bruises and pulls on his muscles too much.  Therefore, he has been unable to use his stander at all, further hindering his possible standing/walking one day.

I talked at length with his Physical Therapist today, and she suggested that we try a medication called Baclofen to help relieve some of the tightness in Eliah's muscles.  And it could really help him.  The downside is, that because he has no torso control or strength, it will make it harder for him to learn to sit up.  But I guess we will cross that bridge when we get to it.

In addition, his therapist wants to give his Physical Therapy a "break" in the spring.  Meaning, he won't get any physical therapy for approximately three months, then go only every two weeks.  And from the impression I got, she's been working with him for three years now, and his progress is minimal (and some backwards), so he may not benefit any more from a weekly therapy session.  This was very discouraging to me.  I guess in my opinion, I feel that we need to do EVERYTHING possible to get him working right.  I was hoping to go two times a week, not the other way.  But, as his therapist said, plans can change.  Hopefully they do.

On a positive note, Eliah's blood pressure has been down to normal levels with medication.  He had an echo cardiogram at the beginning of November to determine how much his heart was strained by the hypertension.  We are still awaiting the results of that.  The bad news is, Eliah still has his heart defect.  The cardiologist was hoping that it would resolve on it's own as he grew, but it's still there, and most likely the cause of the hypertension.  Normally, the course of treatment for his defect is to operate, but because Eliah has Hemophilia, they are really at a loss of what to do.  They don't want to cause new bleeding, especially around his heart.  We'll see what they say though.

More good news is that Eliah is sleeping almost 8-9 hours every night.  There are occasional hiccups, but for the most part, he is being consistent.  The new bed is working like a champ too.  I like that it's big enough to sleep in there with him if he's having a bad night.

The kids are doing awesome with the separation.  Natalie is testing limits at both houses, which is expected.  But I think she always tested limits.  Ha! And Eliah loves having the change of scenery and toys.  It keeps him from getting bored.

And you can see by the pictures, the kids are growing like crazy.  I can't believe that Eliah is almost as tall as Natalie.  She is a normal-sized 6yr old, and Eliah is ONLY 3!  That kid is going to break me one day.  I better work out harder in preparation.  :)

I know we have bad days, both Eliah and myself.  Sometimes he's in pain, and he just cannot tell me what's wrong.  Sometimes I do everything I can possibly do and it's still not enough......  And sometimes there are days we just laugh, love and dance.  I live for those days.

That's pretty much it.  Eliah is better, worse and the same.  I love him like crazy.  And I'm so very proud of BOTH of us for being so strong.