This morning brought more answers to Ella's breathing problems after a trip to see Idaho's only pulmonologist, Dr Tipits. Before we actually got to meet Dr Tipits, his assistant prepared Ella by getting a reading on Ella's current oxygen levels, and charting her height and weight. But while we were waiting for the oxymeter to read the oxygen levels, Ella got a bit antsy, and in order for the monitor to pick up accurate numbers, the patient has to be completely motionless. For those of you who know Ella personally, you understand what an oxy-moron it is to even use the two words "Ella" and "motionless" in the same sentence. So, I had to come up with a way to keep Ella occupied and for the most-part, still. I decided that maybe if she started reciting Bible verses, it might take her mind off of the sensor on her pointer finger and allow it to properly pick up her oxygen level. So, I started by suggesting a Bible reference of one of the verses that Ella knew. "Joshua 1:9," I encouraged her... And sure enough, in seconds she was rattling off the Bible verse, and kept her finger fairly stationary, so I encouraged with another reference, "John 3:16!" And Ella proceeded to recite John 3:16, which allowed for enough motionless time to pass and for the machine to pick up a fairly good oxygenation number of 93% in Ella's blood.
Now, I tell you that little story, not to inform you of the oxygen levels in Ella's blood, but to hopefully bless you when I tell you about the discreet reaction of the nurse's assistant. When I looked up and took my eyes away from where they had been focused (on my daughter), and moved them to the assistant, I noticed that she seemed a little choked up. She smiled a big smile, but almost like she was hiding emotion and stepped out of the room quickly, but not before saying, "Thank you, thank you." I don't know what it meant to this assistant to hear this little 3 year old recite such "lengthy" verses with such cheer (especially since she had just looked over Ella's extensive health history and realized that Ella had been operated on 4 times in the past year and confined to 7 full-body casts in her little life)...but it seemed to have really touched her. I would encourage you to lift her in your prayers. And now, I can't remember her name. I remember she mentioned it TWICE! Not many health-care workers that precede the doctor introduce themselves at all, and I know she mentioned her name twice, but just as my mind was having blank spots a few weeks ago, it seems to be flaring again, so if I happen to recall her name, I will update the information. :) Isn't it great that GOD knows her name! I take comfort in His awesome power and ability to make up for my shortcomings!
Onto the update on Ella Belle. After going over Ella's extensive medical history, Dr Tipits concluded that Ella has a number of issues causing her breathing problems. The first issue is that Ella has a chronic lung disease because of the damage done to her lungs at birth from the aggressive treatment performed to keep her alive (life-support/or breathing on the ventilator). For this issue of the damaged lung tissue (or dead spots in her lungs), there is nothing that we need to do at this point except keep an eye on it. As time goes on, Ella should produce new lung pockets that will hopefully out-number the damaged ones and her breathing will (hopefully) only grow better.
Another contributing factor is that she has a bit of asthma that she's been dealing with (which we suspected) and he's kept her on a daily dose of inhaled steroids and rescue inhaler as needed to combat the disease.
The third issue is Ella's newly discovered aspiration. A person will aspirate (take fluid into the lungs) anytime they drink something that bypasses the protective flap that covers the airway and allows fluid to spill into their lungs or anytime acid reflux shoots up the esophagus and spills into the airway and on into the lungs. Ella just so happens to suffer from both problems. So, for now, she is on a very heavy dose (an adult dosage actually) of acid reflux meds and we are thickening her liquids to try and avoid it slipping into her airway. Another aid to hopefully strengthen Ella's swallow reflux will be the initiation of swallow therapy, which will be done with a speech therapist.
Dr Tipits did mention that he would like to have Ella scoped (feed a camera down her airway) more deeply in the future to rule out the idea of a narrowing under her vocal chords (from being on the ventilator for so long), but she would have to be under anesthesia for this, so we are waiting for more evidence (cases of Croup) to warrant this action. Ella's ENT in Salt Lake City has also expressed a desire to see further into her airway because he suspects there is further narrowing. So, this is just a possibility for the future. If it is narrow after they scope, they may or may not decide to do surgery. My hunch is that there is some narrowing, but that she will be able to grow out of it (because as you grow, so does your airway). But, like I said, it's just a hunch. :)
The final comment from Dr Tipits is that Ella may have a rare form of Emphysema known as Alpha 1 Anti-trypsin. One of my family members has this (it's hereditary, not from smoking) and is life-threatening later in life. Basically, in the oxygen molecule that we breathe, there are free-radicals that attack our lungs and damage them, but a normal body has a healing mechanism to repair the damaged tissue. A person with Alpha 1 Anti-trypsin does not have the healing mechanism, so once the lung damage is done, that part of the lung dies, and the damage continues until it's effected the lungs entirely and the patient can no longer breathe. Now, please keep in mind, Ella has not been diagnosed with this. It is only a possibility at this point; and as we watch her breathing improve or deteriorate, we can do a blood-test to find out for sure. Most patients with this lung-disease cannot even be identified as a child because the damage happens slowly, so there would be no symptoms in childhood. It usually shows up in patients in their 40's or 50's and creates the real, deadly symptoms later on in their 60's, 70's or 80's. Interestingly though, the highest ratio of people that have this disease in the United States, live in Idaho! Crazy.
Anyways, for now, Ella has several breathing issues, both upper and lower respiratory, but they are all manageable and under the watchful eyes of her doctors. We are so grateful to our Lord and Savior, Jesus Christ for providing just the right medical staff to find the problems and diagnose our precious girl and to treat her effectively. It's been so nice (understatement) to have a healthy, breathing little girl these last couple of weeks. How comforting to know that Jesus knows exactly what issues she is having and can reveal it to the doctors! And I'm thankful that He cares about each precious life. Because He created each one, special, and with a significant purpose. Praise goes to the Most High God! We stand in awe of His creation and His awesome power to time and time-again save us from deadly perils and especially from our own folly through the blood of His precious Son, Christ Jesus, that was spilled on the cross for our sins! And what's more, He has given us His Holy Spirit of His risen Son to guide and direct us as we take each step!
Now, I tell you that little story, not to inform you of the oxygen levels in Ella's blood, but to hopefully bless you when I tell you about the discreet reaction of the nurse's assistant. When I looked up and took my eyes away from where they had been focused (on my daughter), and moved them to the assistant, I noticed that she seemed a little choked up. She smiled a big smile, but almost like she was hiding emotion and stepped out of the room quickly, but not before saying, "Thank you, thank you." I don't know what it meant to this assistant to hear this little 3 year old recite such "lengthy" verses with such cheer (especially since she had just looked over Ella's extensive health history and realized that Ella had been operated on 4 times in the past year and confined to 7 full-body casts in her little life)...but it seemed to have really touched her. I would encourage you to lift her in your prayers. And now, I can't remember her name. I remember she mentioned it TWICE! Not many health-care workers that precede the doctor introduce themselves at all, and I know she mentioned her name twice, but just as my mind was having blank spots a few weeks ago, it seems to be flaring again, so if I happen to recall her name, I will update the information. :) Isn't it great that GOD knows her name! I take comfort in His awesome power and ability to make up for my shortcomings!
Onto the update on Ella Belle. After going over Ella's extensive medical history, Dr Tipits concluded that Ella has a number of issues causing her breathing problems. The first issue is that Ella has a chronic lung disease because of the damage done to her lungs at birth from the aggressive treatment performed to keep her alive (life-support/or breathing on the ventilator). For this issue of the damaged lung tissue (or dead spots in her lungs), there is nothing that we need to do at this point except keep an eye on it. As time goes on, Ella should produce new lung pockets that will hopefully out-number the damaged ones and her breathing will (hopefully) only grow better.
Another contributing factor is that she has a bit of asthma that she's been dealing with (which we suspected) and he's kept her on a daily dose of inhaled steroids and rescue inhaler as needed to combat the disease.
The third issue is Ella's newly discovered aspiration. A person will aspirate (take fluid into the lungs) anytime they drink something that bypasses the protective flap that covers the airway and allows fluid to spill into their lungs or anytime acid reflux shoots up the esophagus and spills into the airway and on into the lungs. Ella just so happens to suffer from both problems. So, for now, she is on a very heavy dose (an adult dosage actually) of acid reflux meds and we are thickening her liquids to try and avoid it slipping into her airway. Another aid to hopefully strengthen Ella's swallow reflux will be the initiation of swallow therapy, which will be done with a speech therapist.
Dr Tipits did mention that he would like to have Ella scoped (feed a camera down her airway) more deeply in the future to rule out the idea of a narrowing under her vocal chords (from being on the ventilator for so long), but she would have to be under anesthesia for this, so we are waiting for more evidence (cases of Croup) to warrant this action. Ella's ENT in Salt Lake City has also expressed a desire to see further into her airway because he suspects there is further narrowing. So, this is just a possibility for the future. If it is narrow after they scope, they may or may not decide to do surgery. My hunch is that there is some narrowing, but that she will be able to grow out of it (because as you grow, so does your airway). But, like I said, it's just a hunch. :)
The final comment from Dr Tipits is that Ella may have a rare form of Emphysema known as Alpha 1 Anti-trypsin. One of my family members has this (it's hereditary, not from smoking) and is life-threatening later in life. Basically, in the oxygen molecule that we breathe, there are free-radicals that attack our lungs and damage them, but a normal body has a healing mechanism to repair the damaged tissue. A person with Alpha 1 Anti-trypsin does not have the healing mechanism, so once the lung damage is done, that part of the lung dies, and the damage continues until it's effected the lungs entirely and the patient can no longer breathe. Now, please keep in mind, Ella has not been diagnosed with this. It is only a possibility at this point; and as we watch her breathing improve or deteriorate, we can do a blood-test to find out for sure. Most patients with this lung-disease cannot even be identified as a child because the damage happens slowly, so there would be no symptoms in childhood. It usually shows up in patients in their 40's or 50's and creates the real, deadly symptoms later on in their 60's, 70's or 80's. Interestingly though, the highest ratio of people that have this disease in the United States, live in Idaho! Crazy.
Anyways, for now, Ella has several breathing issues, both upper and lower respiratory, but they are all manageable and under the watchful eyes of her doctors. We are so grateful to our Lord and Savior, Jesus Christ for providing just the right medical staff to find the problems and diagnose our precious girl and to treat her effectively. It's been so nice (understatement) to have a healthy, breathing little girl these last couple of weeks. How comforting to know that Jesus knows exactly what issues she is having and can reveal it to the doctors! And I'm thankful that He cares about each precious life. Because He created each one, special, and with a significant purpose. Praise goes to the Most High God! We stand in awe of His creation and His awesome power to time and time-again save us from deadly perils and especially from our own folly through the blood of His precious Son, Christ Jesus, that was spilled on the cross for our sins! And what's more, He has given us His Holy Spirit of His risen Son to guide and direct us as we take each step!
"Worthy is the Lamb, who was slain,
to receive power and wealth and wisdom and strength
and honor and glory and praise!"
Revelation 5:12
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