Posted (Tina) in All Posts on September-27-2008

This was the message on the dry erase board as we entered our new room upstairs. Yes, we moved out of the ICU – thank goodness! Four days of the intensive care unit was enough of a taste for me. Admittedly, it was nice to have the attentiveness of a nurse all the time. But the privacy was so lacking. We are glad to be upstairs again, although we lost our view of the mountains. Bummer!

Last night was a tough one. Ella was literally up every 30 minutes. The night seemed to last forever. Along with retching, she was having lots of gas and tummy trouble. That discomfort has lasted throughout today. While she was up all night, I had no idea that the nurse had weened her oxygen down to 500ccs. It explains why Ella may have been more fussy throughout the night and why she seemed uncomfortable. To avoid this, there are specific instructions to titrate upwards but to not wean the oxygen.

Today, she has been stable on 1 liter. Later in the day, I noted that she was breathing faster at around 75 breaths per minute and her saturations had lowered to the high 80s and low 90s. I asked the PICU docs to take a look and listen to her; it seemed like she might be a bit wet. They ordered a chest xray and afterward, opted to give her a dose of Bumex. As time passed and so did her urine, she seemed to be oxygenating better.

I feel like they keep having to chase her symptoms with more Bumex. I know this is a fine tuning process, but I think it is pretty clear that her current dose of diuretic is not sufficient to keep her in a good place.

The pulmonology team mentioned getting a consult with endocrinology on Monday. Another thought for her elevated heart rate might be an imbalance with the thyroid and/or adrenal gland. It would mean more tests, but it can certainly eliminate doubt and guessing.

Another thought that keeps coming to mind is the food she just switched to: Peptamen Jr. I think it is causing her a lot of tummy trouble, especially now that we tried to change the density of the food over the last few days. Also, I just found out that the MCT/LCT ratio of Peptamen Jr. is (medium-chain triglyceride/long chain triglyceride) is 60:40. In the past, Ella required foods that are close to 100% MCT. The medium-chain triglyeride foods help with fat absorption. Her inability to process fats in her foods does contribute to her overall fluid issue (if you remember, she could not tolerate breast milk due to the fats either).

Ella’s dose of sildenafil went back up tonight to 7mg, three times per day. Tomorrow morning, the plan is to increase it to 8mg, three times per day. It will be interesting to see what the coming days bring as far as the best meds and food to treat Ella long term. We are hoping that we can arrange a Care Conference early next week so we can discuss all the viable options.

Josh is going to watch Ella at the hospital tonight so I can go home and get some real shut eye. I’m very excited at the idea of sleeping. And just glancing at Ella’s picture below makes me want to yawn.

Joel Snyder on September 28th, 2008 at 12:10 am #

Ella, I was glad to come over to the hospital and help your Mom get you moved back upstairs. You slept most of the time I was visiting but you were up all night. I hope your tests go well and will see you and Dad tommorow for lunch. God thank you again for taking such good care of Ella while she is in the hospital. I will see you later. Love,Grandpa!!!!!!!!!!!

Kelly the Nanny on September 28th, 2008 at 12:27 am #

I’m yawning too–in the other room! I’m so excited for the following days and weeks–and for finally being in Denver! Seeing Ella today was like a breath of fresh air, even though the only time she was awake was when she was retching-which was completely heartbreaking. Poor Bun 🙁
I can’t wait ’til we can have a sign at the HOUSE that says Welcome HOME Ella! What a magnificent day it will be…

On another note…

You two as parents never cease to amaze me. Maybe that’s because I’ve only known you for a week–but I doubt it. Josh–your heart and passion for Ella and your wife, and your understanding of God’s purpose for all of this is astounding–truly inspirational.
Tina–you astonish me. I can’t express the words (so I’ll let the Bible do the talking)…

2 Timothy 1:5-7
“I have been reminded of your sincere faith, which first lived in your grandmother Lois and now in your mother Eunice and, I am persuaded, now your lives also. For this reason I remind you to fan into flame the gift of God, which is in you through the laying on of my hands. For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline.”

In my bible, there’s a living insight passage that says this: “If you were blessed with a good mother, you will reap the benefits the rest of your days. A mother’s mark is permanent.”

Ella is certainly Daddy’s little girl, but there are ways that only you, Tina, will be able to touch her–now, and in the future. There is something so different about a mother’s touch; her influence; her voice…

So, the only thing I can think to say that are words of my own are these: How lucky is Ella to have a mother like you? Wow… Yes, you’re blessed to have this miracle child, but this miracle child is just as blessed to have a mommy that’s willing (and somehow able–through the Strength of God alone…) to stay by her side day and night, no matter what. Such a gift from God for your little Bun.

Sleep tight pumpkin, and mom and dad. See you tomorrow 🙂

Gloria & Red Jacobsen on September 28th, 2008 at 3:47 am #

We are so thankful to the Lord that Ella came through the surgery just fine and we are keeping her in prayer for her full recovery.May God bless the efforts of the doctors to find the right medicines for Ella.

Sherl Hiniker on September 28th, 2008 at 4:51 am #

All of you still cease to amaze me. When I’m down I think of you and how much faith you have in God. I then remember I need to turn to God. You have found a wonderful nanny for Ella. I will put you on our prayer list at bible study. The power of prayer!

The Dirirm Family on September 28th, 2008 at 10:20 am #

Just checking on you all. Glad to see Ella is making some forward progress. Praying for sleep for you all and an going home day.
The Dirrim famly

Joan and Steve Odell on September 28th, 2008 at 1:53 pm #

Prayers answered with continued blessings. Rest well Tina and Josh try to rest as much as you can. Sweet Ella, heal, rest and continue to grow. Lord Bless and hugs – Steve and Joan

megan on September 28th, 2008 at 5:59 pm #

I am so thankful that you are out of the ICU.. I hope mommy can get some sleep and that you have some great strides this week =)May God’s angels surround you every step of the way..

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