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.