Posted (Tina) in All Posts on August-13-2008

Yes, tachycardiac means rapid heart rate. I don’t normally post in the middle of the day, but felt it was worth letting everyone know where we stand. So, if these events seem sudden, you may want to catch up by reading last night’s post.

The night was okay except that her alarm was going off intermittently due to an elevated heart rate. I noted this before going to bed and when the alarm would go off throughout the night, I knew before walking into her room, that her heart rate was the culprit.

It is strange to see such a high heart rate. She was on 1 – 1.5 liters when I put her to bed. It is tough to know the exact amount because the dial on the oxygen concentrator. Since it goes up to 5+ liters, the lines of differentiation even between 1-2 liters are slight.

She leaked out of her diaper this morning, so I guess she had good urine output. After cleaning up her bed and changing her, I laid her back down. She seemed fussy. Her heart rate was around 175. As soon as I laid her back down at 8am, she went back to sleep for another 1.5 hours. While she was fast asleep, I would peek in at her. Her saturation was fine, 98-100 but her heart rate was around 155. It stayed this way all last night and is higher than her baseline.

When I woke her up at 9:30am, she was acting like she didn’t feel great. As I brought her downstairs, I kept the pulse oximeter attached to her because I felt like I needed to watch her closer today. Also, since the oxygen concentrator was not exact enough for me and I couldn’t tell exactly how much O2 she was getting, I switched to the portable oxygen tank.

Around 9:45am after she had eaten, she was on 1 liter and her saturation dropped to the low 90s and her heart rate was fluctuating between 185-205. There is no half marks on the regulator, so I increased her from 1 liter to 2 liters. That seemed to help decrease her heart rate, but it is still too high.

Later around 12:15pm, when she was down to a heart rate of 145-165 while just laying there watching a video, I tried taking her back down to 1 liter. Within 30 minutes, she was back saturating in the low 90s with her heart rate at 185. So for whatever reason, I have to believe that extra oxygen is helping her work a bit less.

Besides watching her like a hawk, I have spent most of the morning on the phone. I called the pharmacy checking her sildenafil that was refilled a while back. This was Josh’s idea. I asked if the properties of the compound could break down at all. In other words, was her med not working right? I wanted them to verify that they mixed it correctly and to let me know if the sildenafil could break down. For example, there was about an 8 hour period where it was not refrigerated. Would that affect it? Basically, the pharmacy stated that the prescription should be fine, it would take much longer to break down.

Well, that was one variable out of the way. I called to run her symptoms by someone at Cherry Creek Pediatrics (Dr. Perry does not work on Wednesdays). The triage nurse looked for another doctor around the office, for an opinion. Meanwhile, Dr. Perry called my home number. He told me that he would call regarding her food intake, as a f/u to our appointment yesterday. But I thought he called because the office informed him of her status. Instead, it was pure coincidence that he called this morning while all of this was going on.

I gave him all my thoughts, including the only variables that have changed are using our meds at home (but that the pharmacy was confident our meds were ok) and that we stopped the steroids. Also, I told him that I could hear congestion in her throat this morning for the first time since last Tuesday, when they gave her the megadose of diuretics. And therefore, she has had 4 episodes of retching, one where she spit up water she recently drank. This is the first time she has retched in a week. I hope the nissen isn’t causing more problems. We are trying to be patient and wait for Dr. Kays to come back from the Cayman Islands. Dr. Perry told me to hang tight – he wanted to call the pulmonologists at the Children’s Hospital.

He called back after talking with Dr. Kerby, one of the pulmonologists that watched Ella last week in the hospital. They reviewed everything and sure enough, they are all scratching her heads. This should make Dr. Kays feel better – – it is not just him. Ella is just not textbook about anything!

All her labs look fine and based on her clinical signs, they just want us to watch her closely over the next 24 hours. Dr. Kerby said that sometimes there can be a rebound effect once you stop the steroid treatment. Although nothing really points to why her heart rate would be elevated.

As long as we are able to work with 2 liters and below, they are fine with us managing the problem from home and not at the hospital. If things worsen and she requires more than 2 liters, I am directed to call the pulmonology clinic at the hospital directly. Otherwise, Dr. Perry and I plan on talking in the morning. If the elevated heart rate has persisted and not gotten better by tomorrow morning, they will likely see if they can fit me into a slot in the outpatient pulmonology clinic.

As far as food and his caloric calculations, Dr. Perry thinks she needs more calories. This is consistent with the evaluation from the nutritionist that came to our home. He reviewed the calculations that the nutritionist provided from the hospital and noted that they were off. Rather than increase the density of the food, he wants to increase her fluid intake. He feels okay doing that considering how dry she is with the BUN being 29. So, we are going to increase her food intake by 20ccs each day for the next 5 days. This will give her more calories to help with true weight gain. Let’s hope Ella tolerates it!

Right now, it is around 2:30pm and Ella is taking a little snooze. She is on 2 liters and her heart rate is fluctuating between 125-145, which is better to see. Again, this is still higher than normal, plus she is on a lot more oxygen.

Please say a prayer for Ella today…that she would feel better…that the doctors will be able to figure out what is plaguing her little body.

And as a side note, Josh missed his flight last night, so he had to wake up at 4am this morning to catch the earliest flight and then drive straight to work. So we haven’t seen Dad at home yet, but we should this evening.

The Laz Fam on August 13th, 2008 at 1:55 pm #

Thanks for the mid-day update. You are amazing, my friend. We’ll be praying ~ and so glad Josh will be home soon!
Love you!

Jennifer Harris on August 13th, 2008 at 2:16 pm #

We are praying for Ella to feel better, and Divine guidance, strength and patience for everyone! Thank you for the update.

Peace & Blessings
Jennifer & Chelsea

loren on August 13th, 2008 at 2:31 pm #

Grat big prayer coming to you from my mobile. god bless
xoxo ll

Steve and Joan Odell on August 13th, 2008 at 2:51 pm #

Prayers continue and glad Josh is there. Hugs and love -Steve and Joan

Laura Blackwell on August 13th, 2008 at 3:02 pm #

Lord, make what is bothering Ella clear to her doctors. Give these new doctors incredible wisdom to make the best decisions for Ella. Give her Mommy stamina and opportunities for rest. Thank you for all the amazing things you’ve done with Ella’s life already!

Fran on August 13th, 2008 at 4:02 pm #

Prayer’s for Ella and for the Dr.’s here to figure out what is going on. Tina, you are an incredible Mommy. I am sure you are anxious to have Josh back with you and Ella this evening.

Williamsburg on August 13th, 2008 at 4:06 pm #

Wow. Miss Ella is certainly a pro at keeping the prayer chain plugged in and active – praise God. We continue to remain grateful for His Lordship while humbly petitioning for clarity, peace, wisdom, comfort and _relief_! Thanks for the detailed updates. XOXOXO

Kathy on August 13th, 2008 at 6:31 pm #

I will be praying for her, as well as for you and Josh to be able to get some rest. I pray that God allows all of you to rest in Him tonight and have a peaceful sleep. And also pray for God to reveal to the drs how to help Ella…or else reveal it to Dr. Kays out there in the Caymans. Wouldn’t that be something! All of a sudden on his vacation, he suddenly thinks of her!

Vicki/CO on August 13th, 2008 at 7:25 pm #

My prayers are with you all and for the doctors and specialists for wisdom in their decisions on methods of treatment. You are so precious, Ella, and Josh and Tina, you are incredible. I pray also for rest for all three of you and a peace that can only come from our precious God! Bless you…

Gloria & Red Jacobsen on August 13th, 2008 at 8:43 pm #

We be praying extra hard for Ella,that she feels better and her heart rate goes back to normal.The good Lord certainly sent Ella to the right parents you two are fantstic in your care of your little bundle of LOVE.

Chambers Family on August 13th, 2008 at 10:16 pm #

Tina you are such a strong Mommy! I might have rushed to the hospital – but you know your little one and handled it all with grace. Ella is blessed to have such a tuned in MOM. I can’t even imaging how tough your motherhood role has become! Don’t feel guilty getting some daytime rest. You are sleep deprived – more than you realize.

Eve Johnson on August 14th, 2008 at 5:39 am #

Prayers are with you.

The Brittain Family on August 14th, 2008 at 6:23 am #

hey guys, this has to be tough–especially with so many unknowns dragging on and no “lightbulbs” yet. we truly feel for you and continue to commit precious Ella to the Lord. May He reveal solutions in His timing and give you special strength to care for her through these challenges. He loves you.

Alissa on August 14th, 2008 at 8:47 am #

Tina and Josh…you don’t know me, but I happened to find your site while searching for some kind of answers. I’m scheduled to give birth on the 18th of this month, and like Ella, my baby Jakse is high risk as well. She has a diaphragmatic hernia on her right side, and her liver is in her chest cavity, compressing her heart and lungs. The doctors at Johns Hopkins in Baltimore think that one lung did not develop at all, and that the other is severely under developed. I understand that they want me to hope for the best but prepare for the worst, but it doesn’t leave room for much real hope. I don’t necessarily believe in the Bible or Christianity directly, but I love God in my own way, and certainly believe in signs, miracles, and messages. The fact that I came across your page by chance is definitely a sign to me. I know that Ella and Jakse’s situations may differ in large and small ways, but to know that Ella is here, still fighting and living up each day gives me slightly more hope than I had last week. I’m sorry this is so long winded, but I didn’t see any other way to contact you. I know your lives are busy and full, but if somehow you could find a moment to email me back, I’d be so grateful. I’m terrified. Tomorrow I go to Baltimore for my last appointment before the birth, and then I’ll be staying there for a while, as well as commuting, back and forth for God only knows how long.

Sending my hugs to all three of you,

Johnny and Mary Lou Brantley on August 14th, 2008 at 10:26 am #

Our thoughts and prayers are with all of you.
The Brantley Family

The Riches on August 14th, 2008 at 8:31 pm #

There is hope for your precious baby! Our family (our son is a CDH survivor)will be praying for you and your baby–and I know all of Josh and Tina’s friends will too! Thankfully you know of her CDH before birth–that definitely gives you a head start!
Baby Ella–we’re praying for you too! Miss you guys!
Liz, Rusty & Par

Joel Snyder on August 14th, 2008 at 9:54 pm #

Ella, Grandpa just got home from the Museum working a party. I talked to your Mom earlier today and she said you were doing a little better. I am praying that you will keep improving and start to feel better. I will check on you later. Love,Grandpa!!!!!

Kara on August 15th, 2008 at 9:18 pm #

Any chance some of this is being aggravated by allergies?

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