We apologize for the lack of blog updates this week. Honestly, it’s been a very emotional and draining few days in the hospital. The good news is that Gwendolyn was released a little earlier today and is resting at home. As for what we found out during our stay, well that’s kind of a loaded question.
In terms of her breathing difficulties at daycare which necessitated the hospital stay, we believe that the medical term would be “temper tantrum.” Basically, the consensus of several doctors is that she merely didn’t like being forced to start tummy time and she became so enraged that she held her breath until she turned blue. Her congestion obviously didn’t help her case but likely had little to do with her lack of breathing. In the end, it was nothing more than Gwen just getting upset and holding her breath. Ah… we can’t wait for her teenage years to start!
;)
Seriously though, as we mentioned on the bog earlier, this hospital stay allowed for some of the other concerns we’ve had to be addressed. Firstly, we met with the Head of the Pulmonology Department at CMH who reviewed Gwen’s sleep study results with us. Mom and Dad feel a little more at ease now that someone has taken the time to actually discuss them with us and ask for our input. We also aired out some of our concerns about the validity of the results given what Gwen was dealing with at the time in terms of congestion and fussiness. In the short term we agreed that Gwen will remain on a half-liter of oxygen overnight for the next few months. She’ll also be hooked up to a device at home that will alert us if her blood-oxygen saturation dips too low while she sleeps. But before they repeat a sleep study, we need to resolve her congestion.
On the topic of Gwen’s now infamous congestion, we believe we have an actual answer to that. Due to the inflammation present around her upper airway during an ENT scan, they feel that she’s suffering from periodic reflux. As a result, the stomach acid is getting into her nasal passage and is causing her body to secrete more mucus than normal in the nose for protection. So, Gwen has been placed back on Prilosec to hopefully stop the reflux and ultimately clear up her congestion.
Fingers crossed that it will ultimately do the trick. Once it does, Gwen will have a follow up sleep study that will likely be performed later this summer. We’ve been told that even if those results come back similar to the first, there are a couple of other avenues of treatment we’ll be able to try first before a tracheotomy is discussed again. Ultimately, when the trach was recommended, it was done by someone who last observed Gwen in person earlier this fall before her jaw was even extended. However, now that she’s actually been examined in person by a Pulmonologist who was able to make a first-person diagnosis, the urgency to trach her has been lessened and she’s being looked at as a person, not a number. She obviously keeps her oxygen levels up just fine while awake and only seems to have these breathing issues during her REM sleep pattern.
As for why she might be experiencing apnea during her sleep, that is still a bit of a question. They do feel confident that it is an obstructive and not central problem (or the result of a physical issue not because her brain is forgetting to tell her body to breath). Still, the physical issue could lie in a neurological source. For instance, one suggestion is that her Chiari Malformation might be affecting how relaxed her tongue and upper airway become during sleep. So, while the apnea isn’t central in definition, it might be the result of a limitation of control by her brain. Ultimately, we might never know if her body will ever correct itself or not. Still, Mom and Dad at least feel content that they now have a better grasp for what they are dealing with and that there is what seems to be a competent plan in place to combat it.
On the road to diagnosing her congestion, Gwen had a follow up swallow study which has resulted in a setback to her eating status. Unfortunately, she had signs of aspiration even while eating a honey thickened, chilled bottle (which is what she’s been consuming these last few months). As a result, Gwen’s no longer allowed to take bottles period. So, for at least the next six months, she’s back on the feeding tube for the majority of her nourishment. She can take solids by mouth three times a day but only in limited amounts.
So, we guess that’s the Gwen recap. She’s back home and relatively no worse for wear… but now she’s staying on oxygen and now a monitor at night while she can basically only get food through her feeding tube save for small amounts of solids orally three times a day.
Well, we’re going to get back to some family time… talk to you all soon.
In terms of her breathing difficulties at daycare which necessitated the hospital stay, we believe that the medical term would be “temper tantrum.” Basically, the consensus of several doctors is that she merely didn’t like being forced to start tummy time and she became so enraged that she held her breath until she turned blue. Her congestion obviously didn’t help her case but likely had little to do with her lack of breathing. In the end, it was nothing more than Gwen just getting upset and holding her breath. Ah… we can’t wait for her teenage years to start!
;)
Seriously though, as we mentioned on the bog earlier, this hospital stay allowed for some of the other concerns we’ve had to be addressed. Firstly, we met with the Head of the Pulmonology Department at CMH who reviewed Gwen’s sleep study results with us. Mom and Dad feel a little more at ease now that someone has taken the time to actually discuss them with us and ask for our input. We also aired out some of our concerns about the validity of the results given what Gwen was dealing with at the time in terms of congestion and fussiness. In the short term we agreed that Gwen will remain on a half-liter of oxygen overnight for the next few months. She’ll also be hooked up to a device at home that will alert us if her blood-oxygen saturation dips too low while she sleeps. But before they repeat a sleep study, we need to resolve her congestion.
On the topic of Gwen’s now infamous congestion, we believe we have an actual answer to that. Due to the inflammation present around her upper airway during an ENT scan, they feel that she’s suffering from periodic reflux. As a result, the stomach acid is getting into her nasal passage and is causing her body to secrete more mucus than normal in the nose for protection. So, Gwen has been placed back on Prilosec to hopefully stop the reflux and ultimately clear up her congestion.
Fingers crossed that it will ultimately do the trick. Once it does, Gwen will have a follow up sleep study that will likely be performed later this summer. We’ve been told that even if those results come back similar to the first, there are a couple of other avenues of treatment we’ll be able to try first before a tracheotomy is discussed again. Ultimately, when the trach was recommended, it was done by someone who last observed Gwen in person earlier this fall before her jaw was even extended. However, now that she’s actually been examined in person by a Pulmonologist who was able to make a first-person diagnosis, the urgency to trach her has been lessened and she’s being looked at as a person, not a number. She obviously keeps her oxygen levels up just fine while awake and only seems to have these breathing issues during her REM sleep pattern.
As for why she might be experiencing apnea during her sleep, that is still a bit of a question. They do feel confident that it is an obstructive and not central problem (or the result of a physical issue not because her brain is forgetting to tell her body to breath). Still, the physical issue could lie in a neurological source. For instance, one suggestion is that her Chiari Malformation might be affecting how relaxed her tongue and upper airway become during sleep. So, while the apnea isn’t central in definition, it might be the result of a limitation of control by her brain. Ultimately, we might never know if her body will ever correct itself or not. Still, Mom and Dad at least feel content that they now have a better grasp for what they are dealing with and that there is what seems to be a competent plan in place to combat it.
On the road to diagnosing her congestion, Gwen had a follow up swallow study which has resulted in a setback to her eating status. Unfortunately, she had signs of aspiration even while eating a honey thickened, chilled bottle (which is what she’s been consuming these last few months). As a result, Gwen’s no longer allowed to take bottles period. So, for at least the next six months, she’s back on the feeding tube for the majority of her nourishment. She can take solids by mouth three times a day but only in limited amounts.
So, we guess that’s the Gwen recap. She’s back home and relatively no worse for wear… but now she’s staying on oxygen and now a monitor at night while she can basically only get food through her feeding tube save for small amounts of solids orally three times a day.
Well, we’re going to get back to some family time… talk to you all soon.
So glad for the update. I'm happy you are home and I am also glad that you got some "trach answers". It sounds like maybe things are getting on track or at least you are getting more info. The girls' pictures are adorable! They are so lucky to have such great parents! Hang in there and turn to each other during those trying times!
ReplyDeleteSo first things first....that family pic is so stinking adorable! You have the most beautiful family ever! Now that the gushing is over with, I'm glad that you've gotten some other options to consider and that the hospital stay offered more than just confirmation that Gwen has one strong mind and won't be told to do tummy time if she doesn't want to.
ReplyDeleteI wish so badly that you and she didn't have to have the feeding tube again or the oxygen but I pray that time and these measures will heal Gwen!
Enjoy every (quiet or not-so-quiet) moment of family time that you get and stay strong. I know I have no idea what it's really been like for you but trust that you have loads of friends/family who love you and speaking for myself....Joe and I are always around to help or volunteer another set of hands whenever you might need them!!!
Love you guys!!!