For the past few years, it has seemed that at this particular time of year, as we focus on all that we are thankful for, it is somewhat overshadowed by some bad news we’ve received just prior to these holidays. It has been my mother’s health that has been the biggest worry. At the same time, we have been so blessed to have yet another holiday with her, and for that we are so grateful for! If there is one thing we have learned these last few years, it’s not to take these days for granted!
|My mom and Cardinal on Thanksgiving|
|Group picture of cousins (a few are missing)|
|Cardinal, Macaw and Duckling |
This year, just a day before Thanksgiving…Eagle had his first appointment with a Pulmonologist. We should have had this appointment years ago, as he was diagnosed with Asthma when he was 2. A condition in which was expected to improve and go away by the time he was 5. Instead, his condition has never been controlled and has continually gotten worse. Many times he has had “attacks” that sent him to the emergency room, and each time, we were sent away with every diagnosis except an asthma attack! There have been times when he has grabbed his neck and collapsed to the ground unable to breathe. There have been times when his lips have turned blue and he has repeatedly thrown up with mucus nearly foaming at his mouth. During an attack like this, he was once diagnosed with the stomach flu, receiving no asthma related treatment and this was the last time he went to the ER during office hours! From this time forward, he was treated by his Asthma Specialist on an emergency basis, who explained to me that this incident was caused by a “mucus plug” and that part of his lung probably collapsed. Anytime he had an attack during office hours, we could go to his specialists’ office and she would treat him with a special pressurized machine when he would get mucus plugs. This procedure took nearly 3 hours, but it was well worth the wait (even with 6 bored children) and we went through this numerous times. Most recently, he has experienced panic and episodes of hyperventilation and has developed severe anxiety.
I have always been very in tune to Eagle and most of the time I can easily tell when he is in trouble, which has been a good thing for him, because people who aren't around him a lot don't pick up on the signs and up until recently, he was really unable to communicate that he was having trouble (another blog, another time). I have been very overprotective in allowing him to be with people, who aren’t knowledgeable with his condition and/or how to treat him when he is in trouble. A behavior that has always been driven by an overwhelming fear that his condition is far worse than anyone knows and/or will accept and fear that one of these attacks would rob him of his last breath. I have this overwhelming need to protect him, the best that I can. There have been times when I have not allowed him to spend a weekend with his father or that I have asked his asthma specialist to convey the seriousness of Eagle’s condition to his father. I allow him visits with his grandmother, but I do not allow him to visit her at her house. I very rarely allow him to visit my own brother at his house, unless I’m there. I will probably always be this way!
A few years ago, a pediatrician noticed that he was on an unusual amount of asthma medications and she suggested that he should later be tested for other lung diseases. We moved and we found a new asthma specialist, who has desperately but unsuccessfully tried getting his asthma under control. He did seem to have a period of doing well, but this was very short lived. His attacks got worse and he developed terrible anxiety and panic with his attacks. After 2 episodes of pure panic and a few more visits to the ER…I demanded that he be refered to a Pulmonary Specialist, as there was no way we could live like this. His pediatrician sent him for a PFT (Pulmonary Function Test). The test results showed that he indeed did have abnormal lung function, but they felt the results were within the asthmatic range. Still, he was given a referral to the Pulmonologist.
At his first appointment, before seeing the doctor, they performed another Pulmonary Function Test. When we saw the specialist….he was amazed that Eagle could seemingly function so well in his current condition. He asked Eagle how he felt that day and if he felt like he could breathe ok. Eagle said he felt fine and that he was breathing fine. The specialist listened to Eagle’s chest and noted he heard no wheezing and that it sounded like he was moving air fine. The test they did during that visit showed something very different. This is why we have such a problem when we go to the ER and why other family members have such a problem accepting that anything is wrong with him….he “looks and behaves fine” and to a trained ear…he even sounds fine! The pulmonary function test showed that at best, the large branches in Eagle’s lungs are functioning at 44% and the small branches are functioning at only 17%. On the day of this visit, his peak flow level was 90 (a number that should be between 180 and 200) and amazingly, his oxygen level was at 98%. The specialist emphasized how serious my son’s condition was and I was very offended to be told that I take my son’s condition too lightly! Me, the one who has freaked out and has been completely overprotective since this child was 3….the one who worries about who he’s with, where he goes, etc, etc...the one who complains about how no one else takes this seriously!
A mother’s intuition is such a powerful thing and I finally had proof to what my gut has screamed all along, so it didn’t really matter that this doctor had no clue how seriously I took my son’s condition….I finally have someone who can figure out what is wrong with my son and I pray that it’s not too late for him to help him!
Eagle was put on a 3 week dose of steroids and the highest dosage of a new lung medication (a rare one, which I found out…no pharmacy carries in stock). I understand that the benefits far outweigh the risks, but I sure don’t like that it carries a "black box warning". Even though this isn't the first black box warning drug he has taken, there is still some level of uneasiness using such a drug. I researched this new drug and found that it is usually given as a last resort and to children over the age of 12. As with all drugs, this obviously has some side effects, I'm not to fond of the ones that this drug carries either...loss of bone density, reduced growth, immunosuppression, adrenal suppression and increase in asthma related deaths (this one is hard for me to swallow)! I have to remind myself that no other treatments have worked and that he can not continue to live in his current condition...this is a last resort! He will continue to take his 4 other asthma medications along with this new drug. He was given a new Asthma Action Plan and I was told how to handle emergencies in the ER from now on. I was told that he should be admitted in the hospital with any peak flow reading of 150 or under. I was allowed to take him home the other day, only because his condition was chronic and because he was behaving normally. The specialist says that Eagle is to a point where his body has simply adjusted to this way of living, but that he can not live this way! If he had normal lung function right now, he would be in a panic saying that he is unable to breathe, but for now…this is normal for him. This doctor suspects that when Eagle gets to the point where he is saying he can’t breathe and is to the point of being in a panic…he thinks that he would only be functioning at a total lung function of 20% and that would be life threatening for Eagle.
Right now…my son should be admitted in the hospital and listed in “critical” condition…and he is instead, enjoying an extended weekend with his father J Can you be any more thankful than that? I didn’t get to spend this Thanksgiving with him and while I am so thankful that he is able to function so “normally” in his current condition…I am scared to death! I know how quickly his condition can deteriorate, as I have seen it many times before! I fear what the future holds for him, but I will remain hopeful! For now…the steroids are working, as his father reports his peak flows are hitting 200 :D
On Monday, he will have his Cystic Fibrosis testing (as this does run in my family and he is obviously exhibiting symptoms of the disease). Next month, he will have some blood allergy testing done and in January, if his condition has not improved under the new treatment plan…he will be tested for many auto immune disorders/diseases, as at that point it will be assumed that there may some disease attacking his lungs.
So, while this Thanksgiving was partly overshadowed with worry…we still had so much to be thankful for and we are so blessed!
Cardinal’s choir performed downtown during the lighting of the Christmas Tree and she was in the parade! We had a wonderful time enjoying the holiday festivites!
|Emu enjoying a ride on the Scrambler!|
|Duckling and Macaw having a blast!|