livingwithevan.com

Month: January 2012

  • Hemi-Fontan Update #3 :-)

    Hemi-Fontan Update #3 🙂

    The nurse came out again at around 5:30pm and told us that Evan is off bypass and everything went great. They are waiting for some of the normal bleeding to stop so they can close his chest. Once he’s closed they will take him to the PCTU (pediatric cardio-thoracic unit) and we’ll get to see him about an hour after that. So, maybe at about 7:30pm. The nurse indicated that Dr. Hirsch is very happy with the outcome and she’ll be out to talk to us soon.

    We took this image a couple days ago… you can see that his feet are fairly blue in comparison to Sarah’s hands. This is why we’re here. The oxygen level in his blood is getting lower and lower as his body grows out of his shunt. With this surgery, the shunt is being removed and the top half of his body will provide blood to the lungs. As his body grows, this operation will continue to grow with him.

    Look at how much Evan has grown in the last 5 months! Click on the image to see it bigger. That’s Dr. Hirsch holding him.

    While I was writing this post Dr. Hirsch came to talk to us and reiterate how well the surgery went. She did have problems getting into his chest because of the scar tissue that is there and she put a piece of GoreTex between his abdominal wall and chest cavity so that getting into the chest next time will not be such a problem. She used the word “scraping” which made me cringe. He may have some extra drainage because of all the work that it took for her to get in. Evan’s pacemaker was turned off and an external pacemaker was installed temporarily due to the cauterization tools used during surgery. The pacemaker will be interrogated tomorrow to make sure there was no impact. She was not happy with where the surgeon in Kalamazoo put the G-tube (in the middle of his chest just below his sternum), which made us laugh because he was complaining about where they put the pacemaker. Apparently if they know the child is going to need a g-tube they put the pacemaker on the right side so the tube can go on the left. They put Evan’s pacemaker on the left… Why? Just assume that these kids might need a g-tube and put the pacemaker on the right all the time. In any case, because of the placement of the g-tube and pacemaker there is very little ‘real estate’ for pacer wires, chest tubes, etc.

    Here are some pictures of the day so far for you to enjoy.

     

  • Hemi-Fontan Update #2 – Updated 🙂

    The same nurse came out and said that Evan is on bypass and Dr. Hirsch is currently performing the Hemi.  Everything is going exactly as planned!

    When I heard that they had just gotten Evan on the bypass machine and started the surgery I was instantly worried… “what on earth is taking so long,” I thought. So I looked into heart bypass on the internet and came across this image of a heart on bypass.

    OK… I completely understand now why it takes so long.

     

     

     

     

  • Hemi-Fontan Update #1

    Evan did so great while waiting for the anesthesia team to take him back.  There was a bit of a delay and they got him at about 1.  A surgical nurse practitioner updated us at around 3 and said that so far everything was going as planned but that they had just begun the actual surgery.  Dr. Hirsch commented that there was a decent amount of scar tissue.  She expected this and told us this would be some of the most tricky part of today’s procedure.  It’ll be the 3rd time opening up his chest.  We’ll get another update around 4:30.

    Thank you to the Wilson family for stopping by.  I hate that you’re here too but I’m so glad to have friends like you.

    Evan is having the bi-directional Glenn aka Glenn aka Hemi-Fontan today.

    Here is a quick 26-second video showing what he will have done today.

     

    Here is the full 9:25 video from which that clip was extracted and has more details.  Evan doesn’t have HLHS but the same operations apply to his condition as well.

    Please be patient with updates.  Among the great things with the new hospital are zero cell phone reception anywhere and spotty (at best) wireless internet.  I’ve lost connection 6 times during this post so I hope it makes it. 🙂

  • In waiting…

    The first case is running late do we’re waiting in pre-op.

    image

    Always with that foot in the air. 🙂

  • Prayers

    I haven’t prayed much throughout everything.  I don’t know why that is.  Well, I do know why but some things should stay personal.  I cannot thank everyone enough for all of their prayers, wishes, thoughts, vibes, everything positive.  Right now I do need to pray several prayers.  I am a very worried mother and I’m sure I will be for the rest of my life.  Please join me in prayer, however you pray.  I need to meditate on these words and this will help ease my mind to get a few hours of shuteye…

    Dear God, please guide the surgeons, nurses, assistants, and specialists.  Guide their hands, heads, and hearts.

    Dear God, please don’t let tonight be the last time I tuck my son in to bed.  Please don’t take him from us.

    Dear God, please give Evan back to us just as happy and full of smiles.  I want my happy baby boy back.

    Dear God, please don’t let this weekend be the last time Evan hangs out with his baby friends.  Let them grow up together as children.

    Dear God, please give Evan a full nights rest so he will be in the best form to go into surgery tomorrow.

    Dear God, please allow this hospitalization and procedure to go without complications.  Please cut Evan a break.  I will gladly take it if you can spare him.

    Dear God, please fill my heart with patience and understanding when people tell me, “Everything will be ok.”  Please quiet my tongue from saying, “So then do you want to change places with me” and know that they just don’t know anything else to say.  What do you say?

    Dear God, please lift the load of worry from my heart and let me release in my trust into you.

    Dear God, please help Evan’s father just as much as me.  Provide comfort to extended family and friends as well.