Posted (Tina) in All Posts on April-8-2008

Ella was fussy again today; she doesn’t seem to be feeling that great.

This was her behavior yesterday too. Although today, I gave her Tylenol twice since she felt like she had a fever. Then, instead of avoiding naps, she finally took a 5 hour nap in the late afternoon. The good news is that it didn’t stop her from going to bed at her normal time tonight.

I hope that this is not an indication of anything else more serious. It is so hard to not assume that possibility, but I think we have been conditioned to be extra sensitive to something being wrong.

We can tell she is gaining weight and does look more puffy in her face. We are just hoping that it is baby fat and due to true weight gain. Just to be sure, we are watching her numbers at night while she is sleeping to make sure that her saturations and heart rate are in the normal range for her.

Feeding was not great for Ella today. I was able to get her to take about 45ccs at one session. The others were not successful – she would cry and not want the bottle. She has been more congested the past couple of days. And when I gave her the bottle yesterday and today she seemed to be gasping for air more often. Imagine having a stuffy nose and not being able to breathe out of your mouth. Then, try to suck on a bottle. Every second or so after she would have great technique, she would break away and take a breath. Unfortunately, this builds up and causes her to have gas/air in her belly. Hopefully, her eating will get on track tomorrow and she will feel better.

An amazing thing happened this evening: the phone rang and it was the Children’s Hospital in Denver. They were returning my call.

We tried to get assigned to a particular doctor last winter and it didn’t happen. After going back and forth on the phone, I knew I needed to research more and that for many reasons along with this one, we should consider staying in Gainesville longer.

When I called last week to start the process again, I took a different route. However, I was still told upfront that he does not take new patients and that it would likely not be possible. Yet, I was convinced that we needed him to take care of Ella. All my research indicates that he is the one of the best in Denver for pediatric lung issues. With this in mind, I was determined to fight and get an appointment with him.

Fortunately, a lady named Lucy who works in the pulmonary hypertension program called me and was really nice. We talked briefly and she praised us for our decision to go to Florida and have Dr. Kays treat Ella. Without going into a bunch of details on her end, she stated that Dr. Steve Abman would be happy to take on Ella as a patient. My heart was immediately uplifted. This is confirmation that getting in the car to go to Denver at the end of May is the right decision. Ella’s medical care is a huge concern and seeing the piece of the puzzle fit together in this way was reassuring.

Also, it is great that Denver has such a strong program for pulmonary hypertension. Many of the things that she mentioned were similar bits of information that we have heard before from Dr. Kays. Although repetitive, it is good to hear because it indicates that the philosophical approach to pulmonary hypertension is similar to Dr. Kays.

I want to type more, but I am literally falling asleep! I need to run into the bedroom and sleep while Ella is getting some zzzzzs, so I am ready to face tomorrow.

Janiss Robles (Philippines) on April 8th, 2008 at 10:39 pm #

Ella, you are such a darling! I can really see from your photos that you are gaining weight. I hope and pray too that this is true weight gain. Your yawn is the sweetest. I hope to see more videos of you πŸ™‚
Stay strong Ella. Always, always wear that smile on your face. You and your mommy and daddy have become an inspiration to many. We love you Ella, and I hope to see you in the near future πŸ™‚
Sending you our love and prayers,
Janiss and family

Joel Snyder on April 9th, 2008 at 12:42 am #

Ella, I called and talked with your Mom and she said that you were not feeling the best today. I hope you start to get better and keep up the great progress that you have been making. I am so happy that you have a new Doctor in Denver and that your Mom as always got the job done. I am praying that things continue to fit togeather for your trip home. Taco had a real good checkup at the Vets today and is on the mend. I will check on you later. Love,Grandpa!!!!!!!!!!!

Matt, Abby, Austin & Caed on April 9th, 2008 at 4:36 am #

It’s good to hear about your getting in with that Doctor. God will always make a way for His will.
Give ear to my words, O Lord, consider my sighing. Listen to my cry for help, my King and my God, for to you I pray. In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation.
Psalm 5: 1-3

The Brittain Family on April 9th, 2008 at 5:00 am #

This is a huge praise that we’ve been praying for…connections in Denver. Praying that Ella’s discomfort is alleviated so that she can keep moving forward and you can get some rest. Keep up the good work! The kids are still excited about her being home. They are so thrilled about it. We all love seeing her cheerful smile.

the Lizotte family on April 9th, 2008 at 6:09 am #

Great job Tina! Ella take good notes from Mommy. Both my girls had fevers and stuffy noses with their new teeth. Supposedly kids aren’t supposed to get fevers when they cut teeth, but I know how I felt when my wisdom teeth came in. YUK, talk about crabby and lethargic. Also with all this rain lately it’s very likely that allergies are acting out. I’ve been fighting that with Roni the last few weeks. Stay dry!

Steve and Joan Odell on April 9th, 2008 at 7:23 am #

Wonderful news – so glad everything is working towards your return to Denver. Our Lord is so very good to us! Enjoy your day – prayers – Steve and Joan

Kristen on April 9th, 2008 at 10:00 am #

Will you eventually ask about something for me? I wonder if the pace of the drive will be important in getting Ella’s lungs used to our altitude. Sometimes when elderly people travel to Denver they end up in our hospitals with complications due to their lungs getting adjusted. Since they are vunerable, I wonder if Ella is as well. Would the physician here suggest a few days here and there along the way as the elevations climb? Just thinking about her little lungs. K

Keith Grow on April 9th, 2008 at 11:35 am #

Glad to hear you’re coming home soon. It’s also awesome to hear you’re going to be using Dr. Abman and Lucy from Children’s because that’s the two that have been helping us since Salem was born. By the way, she just came off oxygen last week, Yeah!
You’ll love the two of them, they’re great. Talk to you soon.

Post a comment

Name:  (required)
Email:  (required)