Posted (Tina) in All Posts on September-22-2008

Happy Birthday to Ella’s Daddy!

Ella was up every hour again last night. We seem to be having a problem with her retching. She will be fast asleep and then she just starts retching. I can’t imagine being fast asleep and waking up with a feeling of nausea. So although I am worn out each night, I just feel bad for the Bun. I get out of bed and try to console her and help her get past it.

The docs keep saying that it is just normal and the nissen should stretch out in 4-6 weeks. I understand that it is normal for her to retch, but to wake up from deep sleep and retch throughout the night? I don’t buy that explanation.

During the day, Ella seemed happy and was smiling for me. It is so good to see that from her.

The sildenafil was decreased again today. I think they are testing to see if they can discontinue the sildenafil completely over the next few days.

I am convinced that the sildenafil is still playing a part in her overall care. Today for the first time, her saturations were lower overall throughout the day. The only time they were 99-100 was when she was fast asleep. Otherwise, they seem to fluctuate between 92-96. This is not a bad saturation, but I wanted the docs to know that this is a marked difference from a few days ago. Up to this point, her heart has been racing faster but her saturations have not been lower. Plus, her breaths per minute were also high today, even 60-70 bpm when she was sleeping!

When the docs checked in later, they agreed that maybe the sildenafil is still having a positive impact on her. They want to watch her overnight and might end up adjusting the dosage back upward. Along with me, they were noting that her saturation and heart rate were all over the place. Sometimes the variable saturations can be a sign of pulmonary hypertension, so they want to watch it carefully.

Discharge from the hospital is being discussed for Wednesday. At this point, we really want it to be Wednesday because we are not only getting tired of living at the hospital, but we have so much to do to prepare for the move. We need to be home. But, the worst is knowing that we don’t feel that great about where Ella is at these days. They are still trying to figure out the combination of meds that is most optimal for her. And even tonight, she is breathing fast, her heart rate is high and she doesn’t seem that great. The hard part is that before, we could just dry her out and leave her in a dried state; it kept her happy and clinically looking well. Yet ever since we went off the major diurectics, and added other meds like Captopril, it has gained her a lot in some areas but now we have just created new issues.

Ella is scheduled for a follow-up swallow study tomorrow. This should give a better idea of what Ella can and cannot eat by mouth. We’re interested to see if the results are the same or different than the last study, which was completed before her most recent surgery. The results should help us when we initiate therapy sessions in the coming weeks.

Please pray that Ella’s increased heart rate will come into a more acceptable range and that her retching will be minimized. We hope that she will sleep well tonight so that we can catch up on our zzzs too.

Thank you for faithfully joining us in our journey.

Galatians 6:2 (NIV)
Carry each other’s burdens, and in this way you will fulfill the law of Christ.

Kelly on September 22nd, 2008 at 11:05 pm #

I’ve been waiting all day to see how she’s doing today! Josh told me she had a rough night–I wonder if that’s why the Lord prompted those writings? Haha. Take a guess… 😉

I’m praying harder than ever for Wednesday, but even more so for her heart rate and her retching and for mommy and daddy to stay sane and FANTAStic in His capable hands.

I think I have a photograph to share with you, maybe tomorrow. Maybe Sunday is better… I don’t know yet. His timing. But I do know that I CANT WAIT TO SEE YOU GUYS AGAIN! 😀

Please, if you 3 need ANYTHING before Sunday, you can always reach me. 100% of the time. I will do anything I can, no doubt. She’s got me under her little perfect spell too Josh! We’re all in BIG trouble!! 😛

God bless, sweet dreams to Mommy and Daddy and Bun. Tons of love and prayers coming from Colorado Springs (for only a few more days 😉 haha)

Kelly on September 22nd, 2008 at 11:06 pm #

(and I officially just realized that I use far too many smileys… or do I really just smile that much? haha)

‘Night Tina, Josh, and Ella. HUGE hugs!

Joel Snyder on September 23rd, 2008 at 2:22 am #

Ella, You looked great today and full of those smiles as always. I am praying that we can find the answer for your heartrate and saturations. Happy Birthday again Josh. Tina I hope that you both can get some rest before you start the move. I will check on you later. Love,Grandpa!!!!!!!!!!!!!!

Lesli on September 23rd, 2008 at 2:51 am #

I’m praying that God would give the doctors wisdom in the heart rate issue. I’m so happy that you found a wonderful girl to take care of Ella! You are such great parents! Happy Birthday, Josh! If I was there, I’d bake you a cake! Enjoy your day!

Love, Lesli Richards

Loren Lizotte on September 23rd, 2008 at 5:11 am #

Happy birthday josh. i pray for ella everyday

Teri Z. on September 23rd, 2008 at 5:28 am #

Continuing to pray for Ella and you. She is such a sweet miracle and a blessing. The two of you are amazing parents and such great advocates for Ella. She is so blessed to have you, as you are to have her. It has been so great to read of God’s work in your family the past few days- isn’t He awesome! Your family has been such a blessing to mine this past year, thank you so much for your willingness to share in such a raw and open way.

(have you tried having her sleep sitting up at night?)

John & Estela Williams on September 23rd, 2008 at 6:59 am #

Belated Happy Birthday Josh, hope you had a blessed one. Ella looks so darling in her white towel and blankie… she is so sweet and continues to look so much like JOSH! We will continue to keep Ella in our prayers as we would like God to guide her Dr.’s for an answer with her heart rate and retching. Love ya The Williams

Megan on September 23rd, 2008 at 7:26 am #

Happy Birthday Josh! Ella your pics are so cute I hope that they can find out what is going on so you all can go home. Constantly praying for you to get better!

Jennifer Harris on September 23rd, 2008 at 7:44 am #

Our continued prayers are with you. Ella is so beautiful and we will see GOD’s work through our faith and trust.
jennifer & chelsea

Chambers Family on September 23rd, 2008 at 8:17 am #

Happy Birthday JOSH!
I love your new enthusiastic nanny! It is tough to find the right fit for a family and even harder to share a home. God is working to make all things fit together lovely.

LoriAnn Kuhn & Family on September 23rd, 2008 at 8:19 am #

We hope you had a great birthday Josh. Not much fun in a hospital, but at least you had your whole family there. 🙂
Kelly, you don’t use too many smilies; it just makes us all see that you are a happy person and that it seems that you truly care for this WHOLE family.
Josh and Tina, I know it is hard enough to move, let alone with all the concerns you have. I wonder if Kelly could hang with Ella for a few hours each day while y’all get work done? You have the hospital AND Kelly could learn more about her? Just an idea. I know it is hard to “let go” of Ella, especially since Tina has been with her virtually every second of her life, with few exceptions.
Love to y’all.
LoriAnn and the Gang

Laura Marold on September 23rd, 2008 at 8:46 am #

Happy Birthday Josh, Praying for you all now and wishing that all your birthday prayers come true today. Love, Laura M.

Kara on September 23rd, 2008 at 11:43 am #

When I was pregnant with Kailee I would wake up 3 or 4 times in the middle of the night just to throw up. I know first hand how horrible it is to be awakened out of a dead sleep like that. Poor thing. I feel for her. Hopefully this will pass soon. I gotta say, that kid of yours is on heck of a trooper. She is going to be an amazingly strong woman one day.

sherry martinez on September 23rd, 2008 at 11:52 am #

congratulations on everything just falling into place. i pray you get out of the hospital as it is so hard to be in there as it is but for as long as you guys have whew im tired just thinking of it. if you need a friend or just someone to talk to cayden and i are always here for you. love and hugs sherry and baby cayden

Tammy on September 23rd, 2008 at 8:25 pm #

The best part about moving is how much junk gets thrown out in the process!!!
Ella looks like she’s feeling better….the retching however is the pits!
My thoughts and prayers are with you through the move, and hope for a speedy hospital discharge1


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