Posted (Tina) in All Posts on June-23-2008

Ella went to the pediatrician today. It was the first follow-up appointment since we interviewed doctors the first week of June. Our appointment was at the end of the day in case we needed extra time.

Since she was going to go see Dr. Perry, she had to put on her cute outfit. If you remember, this is the outfit that Grandma Eusey brought her during a recent visit.

Thankfully, getting to the pediatrician’s office was not a problem. Ever since we switched her car seat to the front, it has been so much better driving in the car. I’m so glad that we found a workable solution! She sees me and handles herself so much better. Plus, it is lots easier to stick those nose cannulas back if she decides to play with them.

Nurse Holly was welcoming and did her initial stats. Ella measured at 26.5″ long and weighed in at 14 lbs, 11 oz which is about a pound heavier than what she weighed 3 weeks ago. That is really good progress for her. I’m sure that between the apple juice she is consuming plus the increased calorie formula is helping with her weight gain. This was the first time that we used the scale in this office, so we won’t really have a baseline for weight gain until next time.

Ella was in a fantastic mood and we had a great visit with Dr. Perry. We spent a lot of time catching up on all of Ella’s status from her appointments at the Children’s Hospital: oxygen decrease, medication increase, food/caloric increase, her blood lab work, her echo, OT/PT status, swallow study, etc, etc, etc. After catching up on all the details, this is what changed. He increased her volume of food to 650ccs of Alimentum daily, an increase of 25ccs overall. He gave the indication that he will likely increase it again in another month. He wants her to be getting more calories, but we will take it slow. Also, he gave us an refill script for Reglan, which helps her digest food. Dr Perry requested that we call and schedule a hearing test at the Children’s Hospital. Since babies that go on ECMO are likely to have hearing loss, this is something that we will need to monitor closely. He wants to see her again in a month, for her 12 month check up and vaccinations.

Overall, he thought she looked great. He did state that if we can make it another year without her getting sick, it would be fantastic for her. So, he gave the indication that it would be good to continue to be cautious with her for at least another year, until after she is 2 years old.

We are trying to get approved for private, skilled nursing hours. This could be someone that comes to the house once or twice a week to help me out. We should know within the next few weeks.

I played phone tag this evening with a new PT. I’m just hoping and praying that it is a good fit for Ella. She needs so much help in this area. On the voicemail, it looks like the middle of next week will be the soonest that we might be able to start up again. We were so spoiled in Gainesville with an amazing PT. It is going to be tough to find someone that is not only talented, but someone that really cares for Ella. When you have that combination, it can be rewarding for everyone involved.

Tonight we have a pulse oximeter test scheduled. This is something that Dr. Abman ordered. Apria dropped off a different machine to us this morning. It will track her saturations and heart rate throughout the night, then they download the data and fax it to the pulmonologist tomorrow.

I think the increase in sildenifil (aka. Viagra) is making a huge difference. As of the other night, her oxygen went down to 250ccs when she was asleep and 500ccs when she is awake. After this test, we will hear back from Dr. Abman to see if he wants to make any further changes to her oxygen. I have a feeling that he may want her oxygen lower since she seems to be saturating pretty well at night.

While waiting in the doctor’s office, I was watching Ella smile and kick. She looked so happy. Looking at her is surreal. I still have a hard time believing everything all of us have come through this past year.

She is such a blessing and has such a sweet spirit. And that smile…it just melts my heart.