Posted (Tina) in All Posts on June-5-2008

Wow, today was exhausting.

It started with trying to find a pharmacy that would make Ella’s heart medicine correctly. We thought we located one, so we dropped off the prescription yesterday, for pick up today. Instead, they called and told us that based on the way they would compound the medicine, it would be $428.99 for a 30 day supply!

It was $72 for a 30 day supply in Gainesville. But we are low and only have enough medicine for another 24 hours, so I was stressing out. I finally found a place that would turn it around quick enough and would make it correctly. They were nice enough to accept my fax of the prescription to start making it (luckily I had made a copy), but they needed the original prescription when we pick it up. So, this meant an extra 30 minute drive across town to pick up the original prescription. All said and done, the new pharmacy will make it for a cost of $196 for a 30 day supply. This means more back and forth with the insurance company to fight for them to cover the medicine that she needs.

We left the house around 12:15pm to head to Children’s Hospital. Once again, the building is impressive.

First, Ella was scheduled for an echocardiogram. The technician was great; you can tell that they work with kids all the time. After about an hour, she reviewed the images with the cardiologist. He came in and explained that there were a couple of images that they were not able to get, so they might have to sedate her. Ella has never been sedated for an echo, so I was not real thrilled about the idea. I explained my position, so he went ahead and tried to get the measurements themselves. This meant another 45 minutes of sitting still for Ella.

When the echo was complete, they were still not able to locate 2 measurements of pulmonary hypertension. They felt it was because Ella was moving too much. It was indicated that it is likely that she will need sedation the next time they perform an echo.

From there, we went over to pulmonology. We were 45 minutes late to see the pulmonologist because the echo took so long. When we went back, they wanted to weigh her and get all her vital stats. When she weighed in, she was 14 pounds, 3 ounces. This didn’t sound great to me because she weighed in downstairs the other day at 13 pounds 12 ounces. All of a sudden, I began to wonder if she has started to retain fluid.

We are pleased that we picked Dr. Steve Abman to monitor her heart and lungs. He is knowledgeable, has great bedside manner and you get the sense that he truly cares. That is so important to me. He did a few things: increased her dosage of sildenifil, decreased her oxygen to .5 liters of oxygen via her nose cannula, ordered an overnight saturation test with a pulse oximeter, and ordered a swallow study to ensure that she is not micro-aspirating. Also, Dr. Lewinsky was present for the exam and meeting too. This ensures that 2 pulmonary doctors are familiar with Ella, in case we have any concerns.

Dr. Abman wants to see her again in 2 months, for a follow-up echo and visit. He asked who we picked for her primary care, so we mentioned Dr. Steve Perry and his face lit up! He ensured that they will coordinate her care together. Apparently, they have worked together frequently. That was a total blessing. I definitely wanted a pediatrician and pulmonologist to work together on Ella’s care. So this was a big accomplishment for the week.

Dr. Abman’s approach to pulmonary hypertension is different than Dr. Kays. In this way, we almost have to re-train our minds. Dr. Kays wants Ella to maintain high saturations whereas Dr. Abman feels that her prime saturation range is between 92-94, awake or asleep. His basis has more to do with the in-depth research and studies showing that there can be too much pressure in the lungs when the pulmonary vessels are too dilated. He did mention that he reviewed the echo on CD from 5/1/2008 and thought it looked good. He is positive about her prognosis moving forward.

Tonight, we have Ella on .5 liter and she is saturating 97 with a heart rate of 125, as she is on her way to deep sleep. According to Dr. Abman, we could wean the oxygen more. He gave the flexibility to wean until we got her to the 92-94 range. This is such a different approach to Ella’s care. We will see where she settles in. Either way, they will be coming to give us a special pulse oximeter that will track her heart rate and saturations while she is asleep one night. Once this is reviewed by Dr. Abman, he will be able to tell if this is the right level of oxygen therapy for Ella.

Before we left, we mentioned the concern about fluid retention. The doc suggested that we go down to the Special Care Clinic and use the exact same scale, so we can see if it is accurate. I’m so glad that he made that suggestion. She weighed 6.2 kg the other day and 6.3 kg today, on the same scale. This makes me believe that maybe she is okay on the fluid side. We’ll just have to continue to monitor it.

I’m so glad that my Mom is still here to help me with Ella for the next week. It makes me realize how tough it is going to be to pull off life in solo mode.

We’re just so blessed to have this little girl. Each day we are around other people and share our story, we are reminded that she is truly a miracle.

Joel Snyder on June 6th, 2008 at 3:21 am #

Ella, I am so pleased to hear that your appointment with Dr.Abman went well and that he and Dr.Perry will be taking care of you and consulting. Tina sounds like getting all the medicine,doctors,tests and everything else coordinated is a challange. I am sure after a few times around the track it will settle down. I am also glad that Grandma is helping you and I want to talk to you about after she leaves I have some ideas. Ella sure looks like she is happy with her Daddy. I will check on you later. Love,Grandpa!!!!!!!!!!!!!!!!

Barbara Mullins on June 6th, 2008 at 4:10 am #

Love Ella’s outfit! I think she loves it too – in one of the pictures it looked like she was trying to show off her “shoes”! So blessed to hear that all is going well for you and that the Lord is leading you to the right doctors, pharmacies, hospitals, etc. Ella looks great and you can tell that she knows she’s at home. I’m keeping you in my prayers. Blessings!


Lesli on June 6th, 2008 at 5:54 am #

Ella looks so cute! I wish they had that outfit in my size. 🙂

Tina, I know it seems overwheming right now, but after a month or so in your new surroundings, it will seem more like second nature. Right now you have to think about every step, but once you get into a routine it will be easier. Not easy, but easier. I remember taking care of Luke when he was little and when we made big changes in diet and therapy or whatever, it would take me a month until I was able to get on “auto pilot” and I didn’t have to hold so much in my brain.

We are praying for you!

The WIlliams on June 6th, 2008 at 6:41 am #

What a day… glad to hear that your Dr. choices were perfect. What an accomplishemnt! Love ya!

Tracy Schultz on June 6th, 2008 at 10:04 am #

That is an adorable outfit! So glad your stressful day is done! :0)
As I look at these pictures of Ella and remember when she looked so small and helpless, I can’t help but thank our Creator for his faithfulness.
She is doing great, and it’s all because of the prayers and people God has put into your lives. God is so good! :0)
Take care, Tracy

the Lizotte family on June 6th, 2008 at 11:37 am #

Ella, I love the floral decor! I think you and your parents are doing well. Always praying for you

Laura Brown (steve's sis) on June 6th, 2008 at 3:37 pm #

OK, so I keep trying to figure out where you are based on your pictures. Is that Sky Ridge in Lonetree? Alex was born there. Joshua was born at Parker Adventist. I would give you the name of a good pediatrician but ours moved to Aspen. =) I know a good ob/gyn. ; )Thanks for the updates. Ella’s smile always makes my day. =)

deanna on June 6th, 2008 at 7:10 pm #

omg she is soo cute i love her hahaha

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