Sep
24
     
What’s the opposite of being discharged?(Day 428)
Posted (Tina) in All Posts on September-24-2008

Going into the PICU (Pediatric Intensive Care Unit). Yeah…we should know better with Ella. Things don’t always go according to plan.

Last night was rough again. She was retching every 45 mins or so.

This morning, she seemed to be getting worse. Her heart rate was still high, varying from 165-190, while she was just laying in her crib. And like yesterday, her saturations were not great.

When she was asleep for her morning nap, her saturation was 92 with a heart rate of 180 and breaths per minute at 78. I have been trying to tell the docs since yesterday that she doesn’t look as good, but I wanted the nurse to communicate the same story. So, I made sure to have the nurse assess her in that moment. The nurse agreed with me, reported back to the docs and even suggested that we increase her oxygen to 1.5 liters, since Ella started saturating in the high 80s consistently.

The echo was completed this morning at 9am. I could tell based on small talk with the technician that her echo did not look great. He even stopped during the test and asked the nurse for her latest blood pressure. I have never seen that done before. My gut told me that something was not right.

When they did rounds, I did my best to articulate my concerns. I told them that the sildenafil had to be making a difference, just based on her behavior. They didn’t seem overly concerned and mentioned that they would be back to discuss the plan once they read the results from the echo.

About 1.5 hours later, a somber pulmonologist walked into my room. It was almost like his tail was tucked between his legs. He had the unfortunate task of telling me that he felt that Ella needed to be moved to the Pediatric Intensive Care Unit. The echo shows that she does need her original dose of sildenafil. In addition, they saw some things on the echo that make them question how her heart is functioning. Although they did not go into detail, you could tell that whatever they saw on the echo made them very nervous.

Also, Dr. Abman talked about a cardiac catheter three weeks ago when she had surgery. We always knew it would be a possibility. Now that they have tried playing with the sildenafil and captopril and things have not resolved with just meds, they want to go ahead and perform this invasive procedure.

As a side note, Dr. Abman is traveling today and was in touch with his team to approve this decision. Even though he was traveling in Canada today, he made sure to call the room and talk to me, to see if we had any concerns.

The docs tried to see if the cardiology team could do the heart catheter procedure today. The sooner, the better so her condition can be treated. Once they realized her history and that she is complicated, they decided to wait until Friday. This way, they can check her history and make sure that they know what they are getting into with her anatomy. They also suspect that her vessels in her heart might be narrowed, which might require ballooning them out. This way, they can also schedule a cardiac anesthesiologist and make sure they have the proper staff to handle whatever they might encounter. We have not been given a specific time for the procedure yet.

In the meantime, we are hanging out in the PICU. The room has no privacy (glass walls), is smaller, has a toilet area with a curtain but no shower. Also, you cannot eat in the PICU rooms. Definitely not the living conditions that we had upstairs. This just makes all of it a bit more challenging in the days ahead.

So we are bummed that the heart catheter test is not until Friday. This means 2 days of waiting around in the PICU before we have any information on what will help the Bun. The good news is that they are still determined to figure out what is ailing Ella. Once this test is done, Dr. Abman and his team should have all the information that they need to make an educated decision about Ella’s care.

Please pray for Ella’s heart and her comfort as we celebrate her 14 months of life today. As always, we’re trusting Him through another bump in the road. May He be glorified through Ella’s circumstances, as we continue to share and be a witness to those around us.

James 1:2-4
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.


Anne in Gainesville on September 24th, 2008 at 5:40 pm #

My heart goes out to the three of you. You will be in my thoughts and prayers.

Kelly the Nanny on September 24th, 2008 at 6:03 pm #

I got Josh’s message earlier and my heart just sunk. He didn’t say details, but he said Ella’s in the PICU and the echo didn’t go well. Poor little Bun 🙁
I just got home from my random Aspen-Sight Seeing Trip around Colorado. God truly showed me how vast and wide He is–Just driving through Colorado, if you go far enough in the right direction, it does GREAT things for the Soul. My soul had a little free time today, which was nice. I pray that yours will too–very, very soon.

I wish there were something I could do for you all. I’m so heartbroken at the backward progress, but we know Christ is in control. I barely even know her and I’m deeply affected. What a blessing to have her and you in my life, though.

If the procedure is Friday (which hopefully it will be; the sooner the better, like you said) if you need ANYTHING please let me know. I can come up there sooner or later than Sunday, whatever you feel is best. I’m a servant of Christ, so if you need to be served in any way please don’t hesitate to call.

Call me (if you get a second, I realize you might not because there is SO much to deal with) and we can talk about everything. But rest assured that the prayer warriors are fighting for Ella tonight (and for weary mommy and daddy), and always, and we lift all three of you up into His hands.

I was just reading I Samuel 12 and verse 19 says “The people all said to Samuel, ‘Pray to the Lord your God for your servants so that we will not die, for we have added to all our other sins the evil of asking for a king.'”
And I got to thinking. When we pray for someone, we intercede. We mentally get involved in their world as we deliberately make contact with God on their behalf. This, admittedly, is only one aspect of prayer, but it’s SOO important!

So, I’m doing my best to “intercede,” and I’m SOO enthused by seeing and hearing about the other prayers being lifted up both in Ella’s name and in Josh’s and Tina’s. You’re all being prayed for, by me and everyone else here. Wow. What a blessing.

I hope to hear from one of you tonight if you get a chance. Until then, be blessed and Rejoice in Him for He will lead the way. Always and forever.

Love you guys! Big hugs!!

Kim Chavez on September 24th, 2008 at 6:10 pm #

My prayers are with you all!

Williamsburg on September 24th, 2008 at 7:12 pm #

“In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God’s will. And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”
We are certainly beyond having appropriate words other than affirming that you three _have_ indeed been called according to his purpose, and it is in that we place our trust. What else is there, really? We are blessed to know you and to offer you our hearts with all the love we have. XOXOXO

Mollie Rosing on September 24th, 2008 at 7:23 pm #

Continued prayers and love from the Rosings…you have the most incredible strength and patience. Praying for comfort and restful sleep for sweet Ella Bun and her amazing parents. Also, praying for wisdom and sound discernment for her doctors.
All our love,

Jim and Mollie and family

John & Estela Williams on September 24th, 2008 at 7:43 pm #

Ella it was wonderful seeing and touching you today… I just loved watching you watching your Barbie movie… so cute. Thank you Tina and Josh for letting me come by and visit this afternoon. Love you guys! The Williams

Tammy on September 24th, 2008 at 7:45 pm #

Blessings and prayers to you all.

Tammy

Kristy on September 24th, 2008 at 8:20 pm #

Sorry to hear your back in ICU. My thoughts and prayers are with you all.
Kristy, Mum to Angel SKYLA LCDH
http://www.skylacdhbaby.blogspot.com

Anne on September 24th, 2008 at 8:33 pm #

Prayers for all of you… we’ll be here on Friday (and every day!)

Laura Marold on September 24th, 2008 at 8:49 pm #

Dear Josh and Tina, I’m bummed too. Maybe though, this is the road to recovery. I feel for you both and will pray for you and lovely Ella. Love, Laura M.

Jennifer on September 24th, 2008 at 8:50 pm #

Thinking of y’all and praying for answers on Friday. Poor pumpkin!

Pat & Bob Hadden on September 24th, 2008 at 10:39 pm #

Every night before I go to sleep, I check on you guys. Wish you were all at home with your cats, just relaxing, happy and healthy. Soon, soon. We send our love.

kristin on September 24th, 2008 at 11:27 pm #

Oh Sweet Little Shoog Boog Ella! May these trying times lead to big discoveries that will lead to fast and extensive healing. I am holding you all and giving you kisses. I promise not to let go! Even when my arms go numb (they are old now girl) or even when I want to sit down…no matter what happens know that you are being held by me and by all that know of you and your family and those who will get to you all as time flies by.

Kisses and hugs to you my sweeting.

Kristin

Alissa on September 25th, 2008 at 12:25 am #

Tina, Josh, and Ella:

Stay strong. I’m there with you as much as I can be. All my love,

Alissa

Joel Snyder on September 25th, 2008 at 2:41 am #

Ella, I am at work and praying and hoping that today’s news is what I think it will be for you and all of us. Answers to your problems and a path to treating it. I am glad that you are being watched so closely and hope Friday will be the day of answers. Tina and Josh my steadfast warriors you both are so capable and fierce in your advocacy for Ella that I am proud beyond words. Try to get some rest. I will check on you three later. Love,Grandpa!!!!!!!!!!!!!!!!!

angie moore on September 25th, 2008 at 3:38 am #

Dear Ella,tina,and josh i am sorry that ella is in icu and i pray that she will get better real soon,and dear Lord please put a healing hand on this precious little baby and let her be okay,try and get some rest and always COUNT ON GOD,we love you all from north caroilna,good day and GOD BLESS.

beth on September 25th, 2008 at 4:09 am #

((((((HUGS)))))) to you all!!

Lesli on September 25th, 2008 at 4:41 am #

Oh, I’m so sorry that Ella isn’t feeling well. I know it must be so discouraging to feel like you are taking a step back….but hopefully this is really a step forward closer to finding the answers that will put Ella on the path to real recovery. I am praying for you to have peace until Friday, that the doctors would have wisdom and insight into Ella’s condition, and that all would go well during the procedure. Love, Lesli

Kathy on September 25th, 2008 at 5:35 am #

I will be praying for all of you. And I just have to say to Kelly…WOW! What a wonderful blessing you are to the family! God bless you as you travel this road with them.

Just remember, He can do EXCEEDINGLY above all that we can ask or think!

Steve and Joan Odell on September 25th, 2008 at 5:57 am #

We are so concerned about the three of you. Tina and Josh you are walking a very special road but I know it can wear on your hearts. Please take good care of yourselves as well as dearest Ella. Our prayers are for strength for the three of you and the team that is working with Ella in PICU and on Friday. Our Lord is holding you all close to him and will guide everyone to do what is right for Ella. Lord Bless and hugs – Steve and Joan

Teri Z. on September 25th, 2008 at 6:37 am #

Praying for you all and for wisdom for the doctors

the Lizotte family on September 25th, 2008 at 7:47 am #

I pray for your doctors to gain the wisdom they need to properly treat Ella. Lots of prayers for you to keep your strengths up and fight for your beautiful girl

Megan on September 25th, 2008 at 7:54 am #

I am so sorry that she is back in the PICU. I do believe for every disappointment there is a blessing. Sometimes waiting for the blessing can be trying but you are an amazingly strong family. Sending prayers and support your way!

Jennifer Harris on September 25th, 2008 at 9:07 am #

Ella’s condition will improve and know that your family is in our prayers.
jennifer & chelsea

Andrea Thibault on September 25th, 2008 at 9:18 am #

All three of you are in my hearts and prayers daily. A little extra going your way this week! Big hugs!

Gloria & Red Jacobsen on September 25th, 2008 at 9:34 am #

Lots of prayer here,for dear little Ella’s full recovery!

Fran on September 25th, 2008 at 9:58 am #

Prayers for continued strength Tina and Josh and healing for Ella. Also for direction for the Dr.’s that they will find the answers and bring Ella through this bump in the road you all are traveling. Love and Hugs, Fran

sherry martinez on September 25th, 2008 at 2:59 pm #

we lift you up in prayer and as always if you need a friend im here for you hugs sherry

The Dirirm Family on September 25th, 2008 at 6:44 pm #

We are praying and my heart is breaking for you all. GOD, give the staff wisdom, protect and heal Ella, protect and strengthen Tina and Josh. You are El Shaddai, God Almighty! Give them all refuge in your mighty hand. I ask this in Jesus name.

Chambers Family on September 25th, 2008 at 7:02 pm #

God Bless he West Family.

Mandy Reister (8th Floor ISS) on September 25th, 2008 at 9:29 pm #

My joy dwindled when I came to work tonight to realize you moved from our floor down to the PICU. I’ve been so hopeful that that precious beauty was on her way to recovery and that you would be comfy cozy at home. Our Dear Lord will guide you has He has for the past 14 months. He will give the Drs the knowledge they need to make the best decisions with her healing in the fore front of their minds. As your fabulous new nanny said I too am a servant of the Lord and would love to serve you in any way possible, please do not hesitate to reach out and just ask! You are the most precious family and I pray you receive the comfort and peace you so deserve. Rest well West family. Feel His arms wrapped tightly around you tonight and each night. I too lift all these prayers up to you Almighty God, in Jesus precious name!

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