Wednesday, December 2, 2009
Emily had an appointment last week with her Louisville pulmonologist. That went well, except for her PFT's were a lot worse than last time. They gave her some Albuterol,waited a little bit, then repeated the PFT's, and that showed some improvement. That is a good thing, that some of her airway issues can be reversed, but it means she has asthma on top of everything else and her current meds were not controlling it. We have known this since she was a baby though, no big surprise. This child has taken so many different meds over the years including massive doses of oral, IV, and inhaled steroids, and we have never gotten her to "normal," so I've pretty well just given up on that. She wasn't wheezing at her appointment, and she actually seemed to be doing fairly well that day even though her PFT's were worse, so I really hated to change her meds based on a test when she actually looked pretty good for once in her life. BUT I would do anything just to get her as close to normal as possible. I see her struggle day in and day out, and if this new med could help that, it would be such a relief for her and for me too.
So anyway, the doctor decided to change her QVAR to Symbicort, and I admit that I was immediately terrified about that for a few reasons, and maybe I am being quick to say that I don't like the Symbicort because of my fears. I don't know. What I do know is the following: The QVAR has been such a big help to us the past few years, and before it, we did Pulmicort as her inhaled steroid. I may as well have been giving her water in that nebulizer, the only thing Pulmicort ever did was make her breathing more labored. But within days of starting QVAR, her breathing improved dramatically. Her hospitalizations were immediately decreased by more that 100% as well. So to hear that her pulmonologist thinks the best thing for her is to stop a med that has helped her so much over the years, and to replace it with a med that has Pulmicort as the steroid component makes me scared. So as I said, maybe I am quick to judge (and possibly misjudge) the Symbicort.
Almost immediately after the switch though, Emily started coughing and gagging all the time (every 15 to 20 seconds approximately), she is hoarse, and her lung sounds are very odd. That is coming from me, a person who listens to lung sounds day in and day out for a living. I don't really have a phrase to describe her lung sounds. Mainly clear (like weird super dry clear, like a kind of clear that is fake and just odd), with a component of the sound you get when you let go of a balloon and all the air comes out in a hurry, that flop flop flop sound. Not as loud as a balloon though obviously, but you get the idea. (Or maybe you don't, I don't know??) Her cough is soooo dry too, way drier than her normal dry cough. And her O2 sats are low 90's today, and that is okay I guess, but it is worrisome as she has been running much higher than that during the day. I just don't think the med is agreeing with her.
So today I called the pulm back today, and I spoke to the nurse practitioner. I think she thinks I am crazy. She said that would be really odd for it to make her cough more and not less (but I swear her cough is practically non-stop! and this only started after starting the new med and stopping the QVAR). But she said they are changing the Symbicort to Advair anyway due to insurance reasons, and that maybe the Advair would do better for her. So I just gave her her first dose of that, and I guess we will see if it makes any difference.
Tonight, Emily has started running a temp of 101. She is still cough cough coughing too, and nothing we try is helping. Respiratory rate 64 breaths per minute. Oh, I hope this is not the start of a downhill turn for her.
In more pleasant news though, Emily had her school party with Santa today, and it was too cute! Pics are below.
The first one is of Emily as she spots Santa near the back door. The look on her face says it all. This one is of Emily shaking hands with Santa. It is Santa! WOW!!! Emily and Mommy at the Christmas party. This one is of Emily singing in her program. She is fourth from the right, wearing all pink. She really had a great day!
Sunday, November 15, 2009
Thursday, November 5, 2009
Moving onto happier thoughts, I am going to share a couple of photos.
Below is a pic from Halloween Trick or Treating! My gorgeous bunch of kiddos, Ashton (the alien head thing), Ryan (death), Emily (a witch), and Braylon (my pumpkin).
And this is a picture of my favorite flag football player "Rhino" with his football trophy. Ryan's team got second in the tournament this year. Ryan, you are awesome!
Thursday, October 29, 2009
Friday, October 23, 2009
Otherwise, we are becoming even more concerned about the flu as our neice has H1N1, and our kids still haven't been vaccinated. I called the health department today, and they said it would be mid to late November before they could vaccinate Emily and Braylon but they would do Ashton and Ryan sooner than that at school. I know the flu to any kid can be devastating, but I am so worried about what would happen if Braylon (chronic lung disease and asthma, former 30 weeker preemie) or Emily caught it. And even the older boys don't handle respiratory infections very well, Ashton with asthma, and Ryan who has had bronchiolitis more times than I care to remember. And they are my healthy kids! It is a scary time, but we continue to pray our kids will remain healthy.
Thursday, October 15, 2009
Wednesday, October 14, 2009
The boys played football all day Sunday, and between their games, we took the kids for a picnic in the park where Braylon and Emily played their own "football game." The coughing and gagging (and eventual vomiting) is pretty typical of what Emily does during activity when she starts to get short of breath. Dr. Young says it is air trapping that causes this.
Sunday, October 11, 2009
The night before the biopsy, I began to accept that this might just be all the life my little girl would ever get to experience. It seemed to me that all the preparations at home had been for nothing. She would never again see the room I had painted for her. She would never get to wear the little pink dresses and sleepers I had bought her. I had other sons, but she was my one and only daughter, the little girl I had always dreamed of having, and she may never even again get to live life not attached to machines. It was at that point that I decided that she had to know that life was worth living, that there was more to life than pain, and I finally left her side that evening for a few hours so I could go to the store and pick her up a few things she might be able to appreciate right then and there even in the sedated paralyzed state she was in. I really feared this was all the time we would have left, and I was going to make every second count. I returned a few hours later with a little pink hat, little soft pink slippers, a soft pink blanket she could lay on, a teddy bear with her name on it, a CD with classical music lullabies, and a baby book so I could fill it out and have proof that she had indeed lived. That night, the nurse and I made footprints on her hospital photo (the one that showed my beautiful healthy daughter that I had brought home from the hospital only a few weeks before), we filled out that baby book as accurately but as positively as possible considering all she was going through and her young age (examples: favorite food was TPN, favorite toy was that teddy bear I had just bought her, favorite music was that CD I had just bought her, etc.). We also took many pictures of her "all dressed up" in her new hat and slippers and played her lullaby CD over and over for her. Maybe if she could just feel how much I loved her, she could hang on just a little bit longer until someone could find an answer for her. And amazingly enough, Emily held on through the night and next morning until it was finally time to say goodbye so they could take her to biopsy.