Sunday, March 2, 2008

A Roller Coaster Day

So as you probably read in the post this morning, Julianne was not herself.  That continued for the rest of the day.  Julianne was really lethargic, her eyes would ONLY look to the left, her oxygen saturations continued to drop, she was cold, she had poor perfusion...she just didn't have a whole lot going for her.  They also had a really hard time getting blood from her for her labs.  Even doing an arterial stick (where they had to get the blood from an artery) took a few tries.  They stopped giving Julianne Captopril and switched her back to Milrinone (the IV drug) to support her heart.  They also stopped her feedings.  That seemed to really help the saturations and lethargy.  She finally "woke up" for a while but still was not looking around.  Her eyes were "stuck" looking to the left

The nurse came in at one point and noticed Julianne smacking her lips and we told her she'd been doing that and that we though she may have a dry mouth.  After the doctor finished the arterial stick I asked him again about her eyes only looking to the left.  He said he was worried about that because she didn't look like this when he saw her before.  So, the attending doctor came in and talked about the possibility of a seizure because of the eyes looking to the side and the lip smacking.  Neurology came and checked Julianne out and was concerned because of her eyes only looking to the side.  He tried ALL KINDS OF STUFF to get her to turn and nothing worked.  It was somewhat inconsistent with a seizure though because it had been going on all day.  They decided to do a head CT to check for any bleeding in the brain which could possibly cause that sideways gaze.  At first they were reluctant to send her to another floor for the testing because of the fragile state of her heart.  But they decided that a doctor from the CICU would accompany her and she'd only go down when they were absolutely ready and return immediately.  So we were just waiting for the call for her to go down to the 2nd floor (sorry for this LONG LONG story...anyway).  At the last minute the resident from Neurology came back and said they put the head CT on hold for the moment because they wanted to just try giving her Benadryl because they realized she could be having a reaction to Reglan, a motility drug that she's been on since she was 4 weeks old. They thought that the new heart medications could be causing her to metabolize her old medicines differently.   If that was the case, we should start seeing results in like 5 minutes.  So, they ordered the Benadryl.  While we were waiting for that to come up my mom and I went downstairs to get some dinner.  When I came back up 30 minutes later Julianne was a different baby!  Her leftward gaze was broken!! The Neurologist was able to get her attention using a rattle, calling her name...everything she should be doing!  We were SO SO SO relieved to see this (in case you're wondering this Benadryl stuff all happened during the time of the Plains Church Prayer meeting :) and SO SO SO thankful!

So, to sum it all up.  Julianne is somewhat back to "normal". She's still sick because of her heart function, so she's going to be more tired and not really up to par, BUT she's moving her eyes and responding to us and we are VERY thankful.

Thank you so much for all of your faithful prayers for Julianne, for us and for her medical team!!  We were pretty scared for her when the talk was brain bleeds and seizures.  Please pray that tonight continues to go well and that Julianne's heart function would improve and please join us in our thankfulness that her altered gaze was due only to an allergic reaction and not anything more serious.  We will update more tomorrow.

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Anonymous said...

Kent and Jessica,
I am so glad to hear of the improvement. I have been praying for y'all everyday since before Julianne was born and will of course continue to do so. I pray for healing for Julianne, comfort for her family, and joy in Him for you all. It's so wonderful to hear you talk again of her smiles and coos. They are all a gift from God.

With love and prayers from Zachary,
Amanda A.

Anonymous said...

We're so thrilled to hear with the Benadryl she came around. That's great news!! All of our prayers for this baby girl are coming to fruition.

We continue to pray that she will get stronger and stronger as the days go on. We can't wait to see her back at home again.

Our love, thoughts and prayers are with all of you, all the time.


A. Stac

Elysmom said...

I'm glad it was just a reaction to the reglan. I had forgotten about that side effect. Our Neuro told us about it and how it was treated with benedryl.

thank God!

Anonymous said...

Hi Kent and Jessica - Lee and I continue to keep all of you in our prayers. We'll be praying specifically for her rest (and yours) tonight ...

Patti and Lee

Anonymous said...

Praise God! I hope litle precious has a better day today.

I love you all
Aunt Sarah

Anonymous said...

Thank God for the wisdom of the Dr. to try Benadryl!! What an answer to prayer for your precious little girl. We will continue to pray for you all, and improvement for Julianne's heart function. Praise God from whom ALL blessings flow!!

In Christ,
M White

Anonymous said...

Praise be to our loving Father! We will not stop upholding you all with prayer here in Zachary. We are so thankful to be allowed to be a part of Julianne's precious journey.
paul and sherry z

Anonymous said...


I'm so glad that Julianne responded to the Bendadryl! I will continue to pray for You, Kent and Julianne.

Tracy Johnston

Jason, Denyse & Hannah said...

The power of prayer! Reglan caused Hannah some pretty intense neurological effects at the same age. She assumed this weird position with her back and neck severly arched. It was the scariest thing to witness. Don't let them put her back on it!! I found that Hannah's reflux didn't get worse being off of the Reglan, so I wondered how much it helped her anyway.

So glad to hear that issue was cleared up. Now our prayer focus will be strictly on her heart function! Please know you are all in our thoughts and prayers throughout every day.

We hope to hear news of smiles today.

The Englerts

Anonymous said...

Thank God that that he guided the Neurologist to consider the drug interaction. I am so happy that you have YOUR Julianne back.:)

I know that so many were praying for Julianne during that time and so it shows God was listening and showered Julianne with his mercy.

I pray that all goes well with her Echo today and that they choose the right time for Julianne's surgery.

I love all of you and continue to pray.

Great Aunt Suzette

Anonymous said...

We are thanking God for His intervention and Julianne's improvement. Know that all of us in Zachary are living every moment with you and are holding you all up in prayer. Our God is an awesome God!

Love, Judy & Neal H.

Anonymous said...

Julianne is such a fighter! You guys seem to be in good hands! God is with all of you! I am always praying for Julianne! She is such a lucky girl to have parents like ya'll!
<3 Kirstin

Anonymous said...

Praising God for His watchcare over Julianne! What wonderful news that she responded to the Benadryl. Those are some really smart people there in Boston! We continue to lift you up daily, praying for complete healing for Julianne's heart and patience and peace for you both. Thanks for keeping us up to date.

With much love,
Meredith L.

Anonymous said...

Praise God for Julianne's improvement! Still praying for you all daily....

Love and prayers - -

Leannne Cole

Anonymous said...

Kent, Jessica, and Family
We are so glad Julianne is doing better and that the Benadryl did the trick. Of course, all of you are in our prayers as we wait for the next step. God is in control!
With love,
Ernie and Carlette B