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.