Posted (jooosh) in All Posts on January-31-2008

Everyone who’s ever gotten a good nights sleep in a hospital raise your hand…anyone…anyone…yeah, didn’t think so.

So let’s be totally exhausted and then NOT get a good nights rest. Unfortunately for us, this is playing with a bit of fire, because if our immune systems get compromised and we get sick, we risk getting Ella sick which could be very bad.

We have been really spoiled after seeing her look the way she did last week. If we think about it, her current stats may have looked OK a few weeks ago, but now that we’ve seen Ella look as good as she has, we know better.

At this moment, Ella is stable but she isn’t even close to looking as good as she did when she was discharged. She is very fussy, and inconsolable. This is hard to see and our emotions are so raw that they’re hard to control. There is nothing familiar about this place and tears seem to flow pretty easy for both of us.* We can’t even really take time to recharge because we cannot trust to leave Ella alone in this part of the hospital. In the NICU she had 24/7 care in a secure area, and from a core team of nurses that knew (and loved) her.

A theme that has been a challenge while being at the hospital is the breakdown of communication between parties. It felt like we were finally getting the hang of things in the NICU, but now we’re having to start all over again with a new team. What blows my mind is communication between the NICU and the pediatric area is non-existent. We are still under the care of Dr. Kays mind you, but now there’s a different way of doing things.

We had spoke to Dr. Kays briefly yesterday at about 1:30pm, but our conversation was interrupted by a phone call he had to take and we didn’t hear back from him. As of 10am this morning, nothing had been changed to improve Ella’s condition. This was pretty frustrating and we didn’t know what the game plan was.

We expressed this frustration to the ARNP (Advanced Registered Nurse Practitioner) and she really did well to listen. She communicated this to Kays, and he came by in the afternoon to talk to us. Of course, when he came by, Ella was sleeping and behaving herself, so he didn’t see how she had looked clinically when she was having an episode.

After expressing our concerns to him, he made the call to take advantage of that painful IV that Ella received yesterday and give her some Lasix. We were good with this, because in the past it had always helped pull our girl out of these spirals. Well, the bummer news is that we did not see Ella respond to the Laisx like she has in the past, and she still looks a little puffy.

Also, Dr. Kays ordered an increase in her Bumex to 1mg twice a day. He’s taking this direction because her blood work looked ok except for her BUN. Kays usually likes to see this number around 24, but Ella was coming in around 12. A lower number indicates more fluid in the body, so giving her more diuretics makes sense.

So far though, Ella continued to have multiple respiratory distress episodes this evening, all of them requiring blow by oxygen just to get her to calm down.

The bottom line: We wish we could be admitted back to the NICU 3 where the doctors there really know our girl, but hospital policy prevents this. This really stinks, and I would understand it if Ella’s mystery problem had been resolved and we were coming back 2 months later because she was sick with something else.

Ella also had an echo cardiogram today and it didn’t show any signs of shunting or pulmonary hypertension. This is good, but it was taken during the one time she was asleep today and not under major duress.

At this point we just hope Ella sleeps well tonight so we can try and do the same. She was given some Tylenol and something for possible gas pains so at this moment she is passed out.

Tina and I are both totally exhausted and we’re fading right now…please continue to pray for the three of us and for Ella to make forward progress.

* In the middle of writing this post (it was written over a span of 5 hours this evening), a person from housekeeping came in to clean the bed space next to us. She asked us how long we’ve been here, and we shared some of our story with her. She started to get a bit emotional, and I felt prompted to go give her a hug. I then expressed how awesome and faithful our Lord has been, seeing us through this entire time. We talked back and forth for awhile (ok…maybe I did most of the talking), and we ended up praying together. God used this time to bless us and send His peace. Our Heavenly Father new exactly what we needed, and Tina and I were so encouraged by this. This affirms a saying that the Lord has put on my heart over the last couple days: There are no accidents, only God ordained moments.

Thank you Jesus for ordaining this moment.

Char and Jim Jordan on January 31st, 2008 at 11:26 pm #

We are here. We are praying for a better day for you two and of course baby Ella. We know you are having a difficult,miserable time. We know that the Lord has something in mind. Please try to sleep when she does. This is even worse when you are not home. Ask the NICU nurses to stop by on their way home. For reassurance and love as they provided to you when you were in the NICU. We love you, we are proud of you and hope things get better for Ella really fast. LOL Jim and Char

Kristen on February 1st, 2008 at 12:03 am #

Sweet dreams to all! May the Lord give you the best power nap ever!

Julie Kirk -Saudi Arabia on February 1st, 2008 at 3:34 am #

Prayers for you and Tina to have the energy to be the persistent squeaky wheel at that hospital for little Ella. No one knows your baby like you do.

The Brittain Family on February 1st, 2008 at 5:55 am #

Thank the Lord for housekeeping staff! Is there a hospital administrator that you might be able to speak with? We’re praying for wisdom and rest for both of you as well as healing and protection for Ella.

Bejie Wilson on February 1st, 2008 at 6:49 am #

Hello: This is Caed Searles’ Grammy and Caed’s grandpa and I want you to know that we are praying for you three. God will strengthen you and pour His love, wisdom and mercy out all over you. We pray that He will wrap His loving arms around you and Ella.

Bejie Wilson

The Vodnik's on February 1st, 2008 at 7:55 am #

Not a day goes by that we don’t think and pray for all of you. You are both amazing!

Anne on February 1st, 2008 at 8:04 am #

I’m still here… just don’t know what to say. Words fail me…. but I think about you and pray for you every day.

Laura Sizelove on February 1st, 2008 at 8:43 am #

Hang in there!! We’re praying for you.

Joel Snyder on February 1st, 2008 at 9:18 am #

Ella, I have been busy trying to get ready to come and see you and so I got a bit late on this last post. I am praying that you will once again start those baby steps forward. Josh and Tina I know it is terribly frustrating that things aren’t falling into place. Please lean on each other and keep the faith this will pass and new challanges will emerge. I will check on you tonight. Love,Grandpa!!!!!!!!!!!!!

John & Estela Williams on February 1st, 2008 at 9:29 am #

Stay strong Tina and Josh… stay strong and lean on him. I am so sad to hear about the Hospitals policy’s as this does nothing for Ella. Will pray for you two today. Love you!

Heidi Anderson on February 1st, 2008 at 9:38 am #

My heart is aching for the pain you are experiencing right now… we are praying and we are so thankful for the God moments you are experiences throughout your pain. What a blessing you are being to others, despite the sadness you have over watching your little one suffer. We are praying for the doctors/nurses to LISTEN and for your strength as you help Ella get better. Love from California…

Dana on February 1st, 2008 at 10:10 am #

Josh and Tina- That picture of Ella crying just breaks my heart knowing she’s in pain and there is nothing you can do to stop it! We are praying for you everyday here in California, that you will gain the strenth that you need to take care of your sweet little bun. We love you.

Lizotte Family on February 1st, 2008 at 1:14 pm #

OHH my goodness poor thing… all of you. I wish I could be there and make it all go away. Mr. Snyder will be there soon, and hopefully help comfort you in someway, I can tell he is a natural at that. It will get better keep your strength in God and know he is there next to you. I simply know he is.
Lots of prayers for you!

Kara on February 1st, 2008 at 2:20 pm #

For Uncle George: Take that airborne stuff before you get on the plane so you won’t pick anything up and give it to little bit. oh and those Zia Cam nasal swabs are the bomb at keeping you healthy when you don’t have time to take care of yourself.
Josh and Tina: YOU ROCK!!!! As Rob always says- I can do anything as long as I know it will end. This will end, even though it feels like it never will. Love you guys lots and lots!!!

Williamsburg on February 1st, 2008 at 7:22 pm #

I don’t know how much, if any, comfort this will be, but I can’t help but imagine how many people you have brought into the Lord’s presence to petition for you – and in the midst of how much pain you are in and how we hurt for you, I am still grateful for how much I am blessed every time I pray for you – think of that blessing multiplied by the 100’s of ppl praying for and loving you. It certainly doesn’t change your _so_ tough circumstances, but in the heavenly realms God is being glorified. We pray for you hourly and love you so much. Kiss Ella-bun for us. XOXOXOXO

Matt, Abby, Austin & Caed on February 1st, 2008 at 7:35 pm #

We’re here for you. We’re praying with you and for you. We love you. Hold on to Jesus as hard as you can and know that He is holding on to Ella and to both of you with unbreakable strength through this.

The Morgan Family on February 1st, 2008 at 8:19 pm #

I’m so sorry that all of this has happened, please know that we check in on you all daily and you are on our mind and in our prayers constantly. At this moment we’re having to find Arissa a new pediatrician and I feel almost as if I’m giving them interviews, I keep trying to express how important it is that the new doctor is willing, even eager to contact Dr. Kays and her current pediatrician for any and all concerns, I keep telling them how important it is that there is communication between all of her doctors past and present. What you are experiencing now is my biggest fear and it breaks my heart to see that you all, and especially little Ella are going through this. It’s so good to hear that the Lord is giving you reassurances that He is with you and He knows everything that you will go through before you yourselves do. Through the roughest times I would feel comfort in the fact that He had all of this mapped out long before it ever happened. Please know that we are with you and remind little Ella that she has taken up residence in so many of our hearts!

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