Tonight’s update has a lot more questions in it than answers… but at least the questions left will hopefully lead to a conclusion devoid of surgery.
What we learned today is that the breathing issues Gwendolyn’s exhibited likely have nothing to do with any neurological side effects from the spina bifida. As a result, we can hopefully cross any low-level brain surgery from the equation in the short term.
However, what we don’t know for sure is the exact collection of ailments that’s combined to cause the issues. What’s been theorized by individuals possessing a much more extensive college catalog than I is a combination of reflux combined with an upper-respiratory virus in the bronchitis family.
The hospital pediatrician told me tonight that he THINKS the issue is that the slightly abnormal flap in her throat discovered by the Ear, Nose and Throat doctor’s scan yesterday is agitating an equally common case of newborn reflux. That reflux combined with a form of bronchitis would explain the worsened symptoms when she eats, the congested squeaking at other times and, believe it or not, the apnea she exhibits for time-to-time. Apparently the thought is that the combined pressure from the inflamed respiratory system and the burning irritation from the reflux sometimes puts pressure on a nerve that connects to the part of the brain that tells the body breath. The nerve is slightly pinched, therefore reducing the sensation to breath at certain points.
Let me add this disclaimer… I had a LONG conversation with the hospital pediatrician tonight. The majority of that reminded me of my French classes in high school. There was a whole lot of talk using a ton of words that sounded interesting but that I couldn’t repeat to save my life. So, what I’m writing on this topic is based on the layman’s description that followed the possible diagnosis. I say this only to caution that this is what I THINK he was relaying but as with any medical conversation, I might have lost some of it in translation.
Anyway, I did press the pediatrician and asked for verification that what he was telling me boiled down to the fact that Gwen doesn’t have a physical defect that we can see right now causing her symptoms… so the solution to her ailment will be mediation and not surgery. He confirmed that to be correct but he also cautioned that we might be a good 4-5 days away from knowing exactly what virus/infection is causing the respiratory limitation and therefore, a ways away from plotting out what course of medication is best suited for her situation.
So basically we are in the ever popular hurry up and wait camp. Yet, where we are right now is much better than were my head was traveling last night as I sweated poor Gwen going through yet another brain procedure. (Of course just as I typed that, her blood-oxygen meter dropped down to 63-percent causing her monitor to flash like the night sky on Independence Day and the nurses to pull their best Usain Bolt as they sprinted into our room. Luckily, we calmed her down with the help of her bottle but I guess you never are fully out of the woods until you are healed!)
They are also going to try and wean Gwendolyn off the oxygen. The fear is that for a one-month old, being on the oxygen can be addictive and cause the lungs to get lazy because they don’t have to work hard to get the correct oxygen saturation in the blood.
Anyway, as we sit here tonight, we still don’t know exactly what’s wrong with Gwendolyn. However, we do know that the most serious possibilities have been discounted and the more manageable are what we have left on the board. (Where’s Dr. Gregory House when you need him!)
Unfortunately, I was told tonight to expect a stay of about two weeks for Gwen. They need to officially diagnosis the issue, set the treatment schedule, administer it, then be sure it worked. She won’t be released until she’s been symptom free for at least a 24-hour window.
Oh, on top of everything else, it seems that Gwen’s got a urinary tract infection. The only good thing there is that it is so minor that they don’t even think it will require extra medication to correct.
I guess that’s all I know right now… I’ll be sure to not only have a Halloween entry for you all tomorrow but a photo of BOTH my precious girls! (I don't want Braelyn to get forgotten in this mess... I haven't seen her in a day and miss her terribly already!)
What we learned today is that the breathing issues Gwendolyn’s exhibited likely have nothing to do with any neurological side effects from the spina bifida. As a result, we can hopefully cross any low-level brain surgery from the equation in the short term.
However, what we don’t know for sure is the exact collection of ailments that’s combined to cause the issues. What’s been theorized by individuals possessing a much more extensive college catalog than I is a combination of reflux combined with an upper-respiratory virus in the bronchitis family.
The hospital pediatrician told me tonight that he THINKS the issue is that the slightly abnormal flap in her throat discovered by the Ear, Nose and Throat doctor’s scan yesterday is agitating an equally common case of newborn reflux. That reflux combined with a form of bronchitis would explain the worsened symptoms when she eats, the congested squeaking at other times and, believe it or not, the apnea she exhibits for time-to-time. Apparently the thought is that the combined pressure from the inflamed respiratory system and the burning irritation from the reflux sometimes puts pressure on a nerve that connects to the part of the brain that tells the body breath. The nerve is slightly pinched, therefore reducing the sensation to breath at certain points.
Let me add this disclaimer… I had a LONG conversation with the hospital pediatrician tonight. The majority of that reminded me of my French classes in high school. There was a whole lot of talk using a ton of words that sounded interesting but that I couldn’t repeat to save my life. So, what I’m writing on this topic is based on the layman’s description that followed the possible diagnosis. I say this only to caution that this is what I THINK he was relaying but as with any medical conversation, I might have lost some of it in translation.
Anyway, I did press the pediatrician and asked for verification that what he was telling me boiled down to the fact that Gwen doesn’t have a physical defect that we can see right now causing her symptoms… so the solution to her ailment will be mediation and not surgery. He confirmed that to be correct but he also cautioned that we might be a good 4-5 days away from knowing exactly what virus/infection is causing the respiratory limitation and therefore, a ways away from plotting out what course of medication is best suited for her situation.
So basically we are in the ever popular hurry up and wait camp. Yet, where we are right now is much better than were my head was traveling last night as I sweated poor Gwen going through yet another brain procedure. (Of course just as I typed that, her blood-oxygen meter dropped down to 63-percent causing her monitor to flash like the night sky on Independence Day and the nurses to pull their best Usain Bolt as they sprinted into our room. Luckily, we calmed her down with the help of her bottle but I guess you never are fully out of the woods until you are healed!)
They are also going to try and wean Gwendolyn off the oxygen. The fear is that for a one-month old, being on the oxygen can be addictive and cause the lungs to get lazy because they don’t have to work hard to get the correct oxygen saturation in the blood.
Anyway, as we sit here tonight, we still don’t know exactly what’s wrong with Gwendolyn. However, we do know that the most serious possibilities have been discounted and the more manageable are what we have left on the board. (Where’s Dr. Gregory House when you need him!)
Unfortunately, I was told tonight to expect a stay of about two weeks for Gwen. They need to officially diagnosis the issue, set the treatment schedule, administer it, then be sure it worked. She won’t be released until she’s been symptom free for at least a 24-hour window.
Oh, on top of everything else, it seems that Gwen’s got a urinary tract infection. The only good thing there is that it is so minor that they don’t even think it will require extra medication to correct.
I guess that’s all I know right now… I’ll be sure to not only have a Halloween entry for you all tomorrow but a photo of BOTH my precious girls! (I don't want Braelyn to get forgotten in this mess... I haven't seen her in a day and miss her terribly already!)
Heather, you are amazing. So thankful that your sweetie is under the care of the good people at CMH and hopefully on her way to feeling better. I hope you are all feeling condfident in Gwen's recovery. Know you are loved...many a prayer being lifted for your beautiful girl. Love you all - Rance, Steph, Coop and Sam
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