More News

March 15, 2010

Well, we have more news on Joshua and what we are going to have to do to help him.  Today we went to the specialist for our weekly checkup on Joshua and Kelli.  First of all, Joshua was pretty much the same but the liver was less herniated this week, the fluid (hydrops) in his body was less and our Dr. was able to spot some right lung tissue which is good.  The Dr. said that these things can change from one day to the next but all looks stable.  (When you get so much bad news all the time, no news is really good news).  Kelli seems to be doing well and has no signs of preeclampsia which is a possibility since Joshua has Hydrops.

Kelli had the amniocentesis today which was pretty scary for her.  It turned out to not be near as bad as we thought and she took it like a champ.  She had some slight cramping in the area that the put the needle in but other than that, she was fine.  They monitored her for 30 minutes after the test with one of those contraction registers to make sure it didn’t put her into preterm labor which is a possibility with doing the test.  They said she was good and she has had no ill effects all night so that is good. We had to have the amniocentesis done because, like I think I explained in my previous post, it will determine what the doctors can do for Joshua depending on if he actually does have any chromosome abnormalities and which one it is that he has.  We will find out the preliminary results in a few days so please pray that everything is normal there.  Our specialist thinks he might have down’s syndrome and if he does, this will make it tougher for him to get through all the battles he will have to fight.

The specialist also let us know that she has been in contact with several of the national centers that deal with the diaphragmatic hernia.  Both UC San Francisco (UCSF) and Children’s Hospital of Philadelphia (CHOP) said that with the CDH, the heart defect and down’s syndrome, they have had no survivors and would not recommend treatment.  These are two of the main treatment centers in the nation so that is not good.

However, the director of the Fetal Care Center in Cincinnati, OH (http://www.fetalcarecenter.org/default.htm) stated that he has had some success with treating both the CDH and heart defect combo with the methods they employ and would take on the case if we so choose.  So, this is good news.  He did say that the extra fluid that Joshua has is possibly due to the path that the blood is taking to the heart since the liver is partially in his chest.  This is the most likely diagnosis for the fluid since the more the liver is herniated, the more fluid he has.  This week the liver was less herniated and the specialist said that the fluid was also down so it seems to her that this is the most likely explanation.  However, the other cause of this type of fluid is due to a leukemia type problem with his blood that is seen in down’s syndrome.  If he does have this, it will greatly affect the outcome of the surgery because he will have a much harder time recovering from the surgeries.

Other than that, everything is the same.  It looks like we will at least be going to Cincinnati to get a consultation in the next few weeks.  If we do go this route (since it is the only route for recovery for Joshua) then it seems that we will be in Cincinnati for quite some time.  Average hospital stays for little ones effected by CDH is 6-8 weeks but could be as much as 6 months or longer.  I figure, if everything goes ok meaning that Joshua responds to treatment and recovers from surgery, we will be there for some time because of the combination of the CDH and heart defect.  Looks like Cincinnati might be our temporary home.

I have never been there and have no idea what to expect.  How is it there?  Has anyone of you been there?  I guess it doesn’t matter because we aren’t going to be out of the hospital very often but I’m curious.

Anyway, Kelli and I are both mentally exhausted from the rollercoaster ride we have been on.  This has been by far the hardest thing we have ever been through in our lives.  The problem is this is just the beginning.  Seeing him lay there with all the tubes that they will put in him and seeing the stitches and incisions that he inevitably will have is going to be the hardest.  As a parent, you want only the best for your children and to keep them from harm.  I cannot imagine how hard it will be to see him like that and not be able to do anything for him.  Please continue to pray for us because the path that we have before us is very long and arduous.  We will have to make some major decisions just to get us to Cincinnati on top of decisions that will be thrust at us regarding Joshua while we are there.  Please pray for us financially as we are already struggling to make ends meet (exactly why we are in NM in the first place living with our most giving and gracious aunt and uncle) and it will be difficult to be away from work while being in a completely new place not knowing where you will get your next meal.  God has personally taken care of us thus far and I am confident that He will continue to provide for us in His perfect timing and ways.  Please pray for us all that when we do go, to find a way to be good parents to Matthew in the midst of all we will be dealing with.  Thank you guys for being there for us and thank you for the continued support.  Please keep praying.

PS:  Would you guys also lift Kelli’s dad Gil up in prayer as well?  For all of you that don’t know, he has been diagnosed with terminal lung cancer.  So far he is doing well from what I understand.  Please pray that God will heal him completely.

Also pray for my niece Kori and my brother in law Robert.  They were in a bad car accident a couple days ago and they are both injured.  Thankfully, nothing life threatening but pray that God will heal them as well.

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3 Responses to “More News”

  1. Jonna said

    My thoughts and prayers are with you guys, I’ll be sure to include Gil, Kori and Robert in my prayers as well.

  2. Nicolle said

    ((HUGS)) Many prayers to your family members. Thinking of your fighter!! Carter Adler was in cincy and has a heart defect as well, not sure if you have talked to his mom at all. Thinking of you and praying that he will be stable soon after he is born so they can do surgery and he will be on his way to recovering!

  3. Tracy Meats said

    My thoughts and prayers are with you and your entire family. I see you found Carter’s link on CHERUBS today and hope you can talk with them about Cinci. Carter has had several surgeries, with the CDH and open heart surgery. Their email is listed on their carepage or if you need help reaching them, just send me a PM and I can leave a message with Carrie on facebook to have her contact you.

    Hope you get good news concerning the amnio and you have a good consult in Cinci. I have heard great things about that hospital. Keep fighting Joshua!!

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