Friday, September 2, 2011

And we're back again...

Jude is now back at UNM Hospital.

Before I explain how he got there, let me review this little boy's journey up to this point:
  • Our baby was born at Presbyterian Hospital on August 15. 
  • We had already known that he had Down Syndrome and a complete atrioventricular canal heart defect.
  • After he was born via emergency c-section due to distress, we learned he had a coarctation as well. 
  • The coarctation is another heart defect that needed to be operated on very soon. 
  • The AV Canal would wait until he was older...maybe 4-5 months old. 
  • As we were originally planning the coarctation repair, we learned he had bleeding on his brain.
  • So, he was transferred very quickly to UNM Hospital the second night of his life. 
  • They performed brain surgery that night to remove the blood and release the pressure. 
  • The surgery was successful...though three other bleeds were left to resolve on their own.
  • He recovered for a week at UNM and then was transferred back to Presbyterian for his next surgery.
And that brings us to now:

The last 24 hours have been something of a deja vu experience.  This morning (which I cannot believe was this morning), we learned from the cardiac surgeon what he is thinking regarding Jude's coarctation repair.  His opinion was that the kidneys would probably be okay, but he needed to get the neurologist's opinion on giving Jude heparin while he is in surgery.  The heparin is necessary to prevent clotting in the tubes, but it could trigger more bleeding because it is a blood thinner.  So, he was waiting on her.

Meanwhile, the ICU doctor thought he should investigate further the leaking from the incision.  So, because they weren't able to get a hold of the neurologist at Pres, he decided to call the neurosurgeon over at UNM.  Soon after, we received the news from him that that they were indeed concerned about the seeping and they wanted to evaluate him.  They could not, however, come to Pres.  We would need to be transported instead back to UNM.

Like before, he had to be transported back via ambulance.
Like before, the coarctation repair has been delayed indefinitely.
Like before, it had to all be done very quickly.
Like before, it felt like another step back.
Like before, we were really concerned about the unknowns of what is going on in his brain.
Like before, they had to perform a procedure to drain the fluid from the site of the hematoma.
Like before, we had to wait late at night to hear the outcome.
Like before, we spent much time praying.
Like before, we were grateful the Lord was with our son when we could not be.

After a CT scan, the surgeon was able to drain the cerebral spinal fluid at the incision site.  It was a successful procedure, and he then sewed up the incision again...this time with stitches.  So, that will hopefully end the seepage.  They are testing the fluid for infection...and we will know the results tomorrow.

So, that is where we are at tonight.  Tomorrow, we will meet with the neurosurgeon to learn more about it.  We have no idea how long we will be at UNM or how long it will take for our sweet baby to recover.

Please pray...
  • for continued healing of his brain.  The rest of the bleeds seem to be resolving nicely. 
  • for healing from his surgery.  We will know more specifics tomorrow as to what is happening to the incision.
  • for reduced swelling.  This has been a regular problem with our little guy...and much of it has to do with his poor kidney function. 
  • for still lower creatinine levels.  They decreased some today (thanks for praying).  
  • for no more bleeding problems.  We would love to have the surgery relatively soon.  He can't be on the prostaglandins forever.  The PGE is what is keeping him alive.
  • for Brandon and me.  I was really struggling earlier with the Lord over some of the things that are happening...not just to Jude but to friends as well.  He has been meeting me where I am at, and I am grateful.
  • for our friends, Peter and Alana.  Their daughter, Ellie, had an aneurysm in 2009 when she was two months old.  She had a surgery last October that stopped the seizures she was having.  Today, while Peter was visiting us here in ABQ, Ellie had her first seizure since the surgery and stopped breathing.  Peter had to return immediately to Denver to be with his family.  He is now sick as well.  Please pray for Ellie and our friends.  I wrote about them two years ago in these blog posts.

I am still confident of this:
I will see the goodness of the Lord
in the land of the living.
Wait for the Lord;
be strong
and take heart
and wait for the Lord.

Psalm 27:13-14

p.s. I have apparently used up all my bandwidth allowance because so many people are looking at this blog.  My pics have all been disabled because of it.  :-) I will try to get it fixed soon, but I do want to say in the meantime that we really appreciate you guys following and praying.  Soooo grateful.


The Washburns said...

Mandy and Brandon, we prayed last night when we got your text, and will continue to do so. Our hearts are heavy and don't understand the ways of the Lord for Jude or Ellie. Yet, we will continue to ask and trust in faith because He is good! So sad to hear Ellie had a seizure and Peter was sick too and had to leave. We got your postcard it was such a highlight of our day you're so sweet. And yes...the flowers are def. not real! Wish we were there to stay up late with you....still praying God will provide for that trip!!!! Love you all. Liz, Phil and girls

Rachel said...

We are praying daily for you guys as you ride this rollercoaster. So thankful for you both and know that you are loved!

Bethany said...

Oh I am praying for you all right now! You are heavy on my heart and in my prayers throughout my day.

Jen said...

Honey, you are so strong and you guys will pull through like no other family I know. Just remember to BREATH on some days that might seem like a hard thing to do. Miss you. Love Aunt Jenny

Kelly H. said...

you're all on my heart. i'm still praying. lots of love!! xoxoxo

Rick said...

Thanks you for sharing, this journey is sure to be a learning experience for all involved. I am here far away in Maine and you have touched me with your love and passion for life. I am a stranger to you, as you are to me, but know that you are now in my heart. Prayers for your family through this challenge, any and all prayers are a blessing.

Post a Comment