Verity's tenotomy surgery and ensuing cast (and cast removal) adventures seemed to dominate our November and December posts in her group. So not too many people know about our visits to her ENT and the sleep doctor in mid to late December, a long-awaited follow-up to the sleep study she had in September.
Immediately after her study was over--as in, that very same afternoon--we received a phone call from the nurses on duty who had read over the report by the respiratory therapist who observed Verity overnight. The study still indicated severe obstructive sleep apnea (OSA), and we were instructed to continue administering oxygen via nasal cannula at night or during naps as needed.
This was somewhat surprising news: Verity's sleep patterns seemed much improved, and she didn't exhibit any of the typical signs of OSA such as snoring. We had thought reflux was the culprit of the obstruction from months past, and with the start of the continuous feed and significant reduction of vomiting during January through the summer, we thought we were on the right track.
Interestingly, though, as we started monitoring Verity with the pulse oximeter and having oxygen at the ready, we noticed that she either had a number of nights in a row during which her saturations would be in the high 90s without oxygen, OR she would have noticeable snoring and need even more oxygen than originally recommended (only 1/32 - 1/16L). We resigned ourselves to having to wait for more information, since the "soonest" they could get us in to see her doctors was December, nearly 3 months after the sleep study! Meanwhile, we were grateful for a fairly consistent night nurse schedule as well as a friend who filled in (and still does fill in) to give Verity care and monitoring during the night. (As an aside, nowadays Verity does need oxygen almost all the time during her naps and at night. It can fluctuate between 1/32 - 1/8L, only needing more if she is fighting a respiratory illness, which, thankfully, has only happened a couple of times this season, and without a hospital stay! Verity does snore pretty substantially, fairly often, though positioning does affect this of course.)
So our first respiratory-related visit in December was with the ENT, who did a quick upper airway scope through her nose right there in the office, revealing nothing other than inflammation from reflux. (That answered my question of whether reflux was still an ongoing issue--clearly it is, even though we don't always see it coming OUT.) He did decide to put her on some nasal drops (Flonase) to help with some swelling to see if that would help (it hasn't noticeably). And then he said we would do a bronchoscopy (evaluation of the airway) to take a closer look at what is causing the obstruction.
A week later we saw the sleep clinic doctor, and she agreed with the ENT that a pulmonologist should be on board with the bronch, so together they have coordinated their schedules for the procedure, which will be while Verity is fully sedated. If the ENT sees something that can be corrected surgically (enlarged tonsils or adenoids, for example), he will do the surgery while Verity is already sedated. Meanwhile, the pulmonologist will check Verity's lungs, taking fluid samples for examination/culturing. (This is called a bronchial lavage, or lung washing. Sounds fun, eh?!)
The plan is to repeat a sleep study at least 6 weeks following the bronchoscopy to see if her OSA has improved. If it has not, then we will move toward fitting her for CPAP. Since Verity is still so tiny, the sleep doctor is reluctant to make that our first step...or rather, our next step, I guess, since we have been addressing this issue for over a year now.
These procedures and surgeries are pretty common in the Trisomy community, as our kiddos are smaller than usual but their tonsils and adenoids may continue to grow at a more "normal" rate. Still, it's always concerning when our little ones must undergo anesthesia--thankfully we have now noted CLEARLY in Verity's records that she is not to be given fentanyl!
Please pray with us for the February 5 procedure and recovery afterward. Thank you in advance!!
Showing posts with label Oxygen. Show all posts
Showing posts with label Oxygen. Show all posts
Sunday, January 20, 2019
Friday, May 11, 2018
Pneumonia and Recovery
About 6 weeks after Verity's overnight hospital stay in March, we were back again after monitoring her at home being unable to keep her sats up. I had taken a nap in the early evening, knowing it was going to be a rough night, and spent hours tweaking her o2 and watching the numbers fluctuate on the pulse oximeter. When her heart rate soared over 200 and wouldn't come down, I woke Ted and we packed up for the hospital.
Unlike the previous ER visit, this one involved lots of tests. We were admitted with the diagnosis of aspiration pneumonia. Since I had been awake all night, I drove home after Ted and Verity finished the admissions process, swapping out with him the following day (and bringing a diffuser plus essential oils, lol).
The scariest part of the whole thing was watching Verity's labored breathing. Her retractions were unlike anything I had ever seen. I was hoping to get her on CPAP or BiPAP, something that we felt would ease the difficulty she was having with her breathing, but they only do that in the PICU (at this particular hospital), and we were in the pediatric acute care unit. (Don't ask me why they can't bring it to those rooms!!) The doctors did listen to my concerns and said they were monitoring her to see if she needed to move to PICU. She never did. Amazingly the nights were not too terrible; it was the afternoons where she seemed to have the acute episodes.
This visit was three days and two nights, and once again we were discharged to come home on oxygen (1/16L prescribed, but we did have to adjust depending on her sats). Verity had an IV in the hospital, but we were given a prescription for "oral" (i.e. G-tube) antibiotics at home. Thankfully she did not have any adverse reactions to the medicine.
It has been about 3 weeks since our hospital visit, and we have had a number of appointments since then (many unrelated to her pneumonia). Overall she is doing quite well, although she has been noticeably sleepy (regrettably not always during the night--hence my writing this at 2:30am!). Every now and then we see a low grade fever, and she has had days where getting a smile out of her is nigh impossible. But for all the fussy periods, she does have her happy, playful times as well, and thankfully her vitals keep looking good. She came off oxygen maybe a week or so after we got home from the hospital. (These weeks have been a blur with all our appointments, which I will detail in a separate post.)
I am thankful Verity seems to be robust and healthy enough to bounce back so well from such a scary illness. But I confess that I will never be able to shake the sense of dread that looms over us whenever we are making a hurried trip to the hospital--we've seen too many babies fly to heaven to take for granted that we will always be able to bring her home.
Unlike the previous ER visit, this one involved lots of tests. We were admitted with the diagnosis of aspiration pneumonia. Since I had been awake all night, I drove home after Ted and Verity finished the admissions process, swapping out with him the following day (and bringing a diffuser plus essential oils, lol).
The scariest part of the whole thing was watching Verity's labored breathing. Her retractions were unlike anything I had ever seen. I was hoping to get her on CPAP or BiPAP, something that we felt would ease the difficulty she was having with her breathing, but they only do that in the PICU (at this particular hospital), and we were in the pediatric acute care unit. (Don't ask me why they can't bring it to those rooms!!) The doctors did listen to my concerns and said they were monitoring her to see if she needed to move to PICU. She never did. Amazingly the nights were not too terrible; it was the afternoons where she seemed to have the acute episodes.
This visit was three days and two nights, and once again we were discharged to come home on oxygen (1/16L prescribed, but we did have to adjust depending on her sats). Verity had an IV in the hospital, but we were given a prescription for "oral" (i.e. G-tube) antibiotics at home. Thankfully she did not have any adverse reactions to the medicine.
It has been about 3 weeks since our hospital visit, and we have had a number of appointments since then (many unrelated to her pneumonia). Overall she is doing quite well, although she has been noticeably sleepy (regrettably not always during the night--hence my writing this at 2:30am!). Every now and then we see a low grade fever, and she has had days where getting a smile out of her is nigh impossible. But for all the fussy periods, she does have her happy, playful times as well, and thankfully her vitals keep looking good. She came off oxygen maybe a week or so after we got home from the hospital. (These weeks have been a blur with all our appointments, which I will detail in a separate post.)
I am thankful Verity seems to be robust and healthy enough to bounce back so well from such a scary illness. But I confess that I will never be able to shake the sense of dread that looms over us whenever we are making a hurried trip to the hospital--we've seen too many babies fly to heaven to take for granted that we will always be able to bring her home.
Sunday, April 15, 2018
Weathering Verity's First Real Sickness
March was a busy month for Verity! In between her big birthday party and getting her first car, we had an emergency trip to the hospital along with a brief (30-hour) stay in the pediatric unit. The week leading up to Verity's party, a few of our kiddos had been sick with some kind of respiratory junk, the first time in a long time we've really battled anything other than minor sniffles. Thanks to our wellness regimen, we were able to contain things pretty well--the kids who did get sick were better within a couple of days, and we managed to keep them as far away from Verity as possible. I had every diffuser in the house kept busy disseminating our essential oils into the air, and we oiled everyone's feet at night and drank a lot of Thieves tea! It seemed that Verity, Rhema, and I were going to escape unscathed.
But alas, in the end Verity did succumb. Frankly, I'm amazed that she was the last to get sick! Her immune system does not seem fragile at all! But of course it hit over the weekend...our nurse warned us on Friday that she suspected something was coming on, and sure enough, Saturday morning Verity was just not herself. She had a low grade fever Sunday afternoon, and we decided to put her oxygen on for a bit of support. We were hopeful that we could ride it all out at home.
But Sunday night things took a turn for the worse. We were so grateful that we had a nurse on duty overnight! She worked with our oxygen tanks as needed but our supply wasn't enough (we only have 2 tiny tanks because we were prescribed a minimal amount--which we aren't even currently using--to help with OSA). We learned later that one of our valves was faulty, so we had an empty tank we thought was full.
Anyway--by 4am we were making plans to take Verity to the hospital, but before I could collect my thoughts and my things, our nurse told me I needed to call 911 instead. Verity was non-responsive and turning dusky. The EMS team arrived quickly and gave Verity a nebulizer treatment and more oxygen before we strapped her into her car seat and secured that into the ambulance. I rode along with her, and it was obvious that the treatment had helped significantly--she simply sat quietly, looking around!
They never did any testing to find out what respiratory thing she was fighting, but whatever it was, it didn't knock her out too long. We were admitted to the hospital and stayed overnight. Verity slept almost the whole time we were there. We knew she wasn't feeling well because she never fought her cannula! The next morning, though, she was doing well on minimal oxygen (she was only at 1/4L after arriving anyway), so we were discharged with more tanks from our medical supply company and orders to keep her on 1/8L probably for "a couple of weeks."
Three days later, we followed up with her PCM, and after a half-hour trial, we were able to ditch the oxygen! Of course she was heavily monitored, but praise the Lord we never did have to give it to her again. And a follow-up with her pulmonologist a week after that also gave good news--she doesn't think Verity needs to be followed, as her lungs are (and always have been) so clear. However, we did put another follow-up appointment on the schedule just in case the sleep clinic (scheduled for the end of May) doctor decides that Verity should be seen by pulmonology again.
But alas, in the end Verity did succumb. Frankly, I'm amazed that she was the last to get sick! Her immune system does not seem fragile at all! But of course it hit over the weekend...our nurse warned us on Friday that she suspected something was coming on, and sure enough, Saturday morning Verity was just not herself. She had a low grade fever Sunday afternoon, and we decided to put her oxygen on for a bit of support. We were hopeful that we could ride it all out at home.
But Sunday night things took a turn for the worse. We were so grateful that we had a nurse on duty overnight! She worked with our oxygen tanks as needed but our supply wasn't enough (we only have 2 tiny tanks because we were prescribed a minimal amount--which we aren't even currently using--to help with OSA). We learned later that one of our valves was faulty, so we had an empty tank we thought was full.
Anyway--by 4am we were making plans to take Verity to the hospital, but before I could collect my thoughts and my things, our nurse told me I needed to call 911 instead. Verity was non-responsive and turning dusky. The EMS team arrived quickly and gave Verity a nebulizer treatment and more oxygen before we strapped her into her car seat and secured that into the ambulance. I rode along with her, and it was obvious that the treatment had helped significantly--she simply sat quietly, looking around!
They never did any testing to find out what respiratory thing she was fighting, but whatever it was, it didn't knock her out too long. We were admitted to the hospital and stayed overnight. Verity slept almost the whole time we were there. We knew she wasn't feeling well because she never fought her cannula! The next morning, though, she was doing well on minimal oxygen (she was only at 1/4L after arriving anyway), so we were discharged with more tanks from our medical supply company and orders to keep her on 1/8L probably for "a couple of weeks."
Three days later, we followed up with her PCM, and after a half-hour trial, we were able to ditch the oxygen! Of course she was heavily monitored, but praise the Lord we never did have to give it to her again. And a follow-up with her pulmonologist a week after that also gave good news--she doesn't think Verity needs to be followed, as her lungs are (and always have been) so clear. However, we did put another follow-up appointment on the schedule just in case the sleep clinic (scheduled for the end of May) doctor decides that Verity should be seen by pulmonology again.
Monday, December 11, 2017
Catching Up...a Bit: Sleep Study & Results
Oh, my goodness...it has been about a month since I updated Verity's blog!! Aside from what I already wrote from last month, November was the Month o' Dental Appointments: myself plus 7 children for regular cleaning and exams, plus 3 children needed sealants fixed/replaced. Only two of those days allowed for back-to-back exams, which meant I was taking someone to the dentist 7 days in November and 2 in December! Oy!
Anyway...as far as Verity's schedule, she didn't have much going on until toward the end of the month aside from her weekly PT and OT sessions. But we did have a couple of significant things happen that last week in November, one of which isn't really worth writing too much about other than to say we had a three-hour, in-home assessment with a navigation coordinator who is helping us write up our application for Medicaid waivers, which can help Verity get more assistance in the future. Since I won't know anything for awhile on that, I will just leave that there and continue with the next and more pertinent item.
Our sleep study, which was originally scheduled for January 8, got bumped up when someone cancelled and we were able to get in on the night of November 26. This was a huge blessing we weren't expecting! It was a L-O-N-G night for both Verity and me...Verity was NOT thrilled with all the wires and gear she had on, but after an hour of screaming (!!), she finally gave up and fell asleep for a couple of minutes, sneezed, woke herself up, and screamed another 10-15 minutes before finally sleeping about an hour. We woke several times in the next couple of hours, and then she had a really rough patch from about 2-3am, finally settling down and sleeping about an hour before waking a few times before the respiratory therapist finally put us out of our misery at 5:45am and let us go home, lol.
The results of the study were sent to our ENT immediately, and we followed up with him a few days later at the earliest appointment they could give us. Not too surprisingly, we learned that Verity has a form of sleep apnea, severe obstructive apnea, although apparently not as severe as some of the kiddos we've met online! (One poor little guy had over 50 episodes an hour! Verity's average was 17.) The good news is that with just a TINY bit of oxygen, those episodes nearly disappeared altogether. So after about 24 hours of various phone calls, we got our oxygen and supplies on Friday, December 1. She only needs 1/32 of a liter per minute, and she only needs it at night, but we haven't QUITE convinced her that it is in her best interest to keep the cannula in!
Now that it's been over a week, we have a bit of a regimen...unfortunately, it still does not include the boots and bar, which seemed to be a bridge too far in getting her to sleep. So we are working on giving her some B&B time in the day until we can finish this transition with the oxygen. It works best when she is pretty sleepy if not already asleep and we can sneak the cannula under her nose and secure it onto her cheek patches.
We are making incremental progress...while we are still waking multiple times at night, it does seem to be less often, and it seems we all get deeper sleep when we are sleeping. Last night was the best yet...though it took a bit of time to settle her down, Verity slept maybe 2 hours, woke briefly, slept an hour and 20 minutes, had an absolute meltdown over the cannula from 1:50 - 2:15am, finally fell asleep again, and didn't wake up until nearly 9:00 this morning!!
I will end this update here, as the GI issues warrant a separate post...but meanwhile, we praise God for revealing the apnea to us sooner rather than later and for allowing us to get started helping Verity on the road (hopefully) to better sleep patterns.
Anyway...as far as Verity's schedule, she didn't have much going on until toward the end of the month aside from her weekly PT and OT sessions. But we did have a couple of significant things happen that last week in November, one of which isn't really worth writing too much about other than to say we had a three-hour, in-home assessment with a navigation coordinator who is helping us write up our application for Medicaid waivers, which can help Verity get more assistance in the future. Since I won't know anything for awhile on that, I will just leave that there and continue with the next and more pertinent item.
Our sleep study, which was originally scheduled for January 8, got bumped up when someone cancelled and we were able to get in on the night of November 26. This was a huge blessing we weren't expecting! It was a L-O-N-G night for both Verity and me...Verity was NOT thrilled with all the wires and gear she had on, but after an hour of screaming (!!), she finally gave up and fell asleep for a couple of minutes, sneezed, woke herself up, and screamed another 10-15 minutes before finally sleeping about an hour. We woke several times in the next couple of hours, and then she had a really rough patch from about 2-3am, finally settling down and sleeping about an hour before waking a few times before the respiratory therapist finally put us out of our misery at 5:45am and let us go home, lol.
The results of the study were sent to our ENT immediately, and we followed up with him a few days later at the earliest appointment they could give us. Not too surprisingly, we learned that Verity has a form of sleep apnea, severe obstructive apnea, although apparently not as severe as some of the kiddos we've met online! (One poor little guy had over 50 episodes an hour! Verity's average was 17.) The good news is that with just a TINY bit of oxygen, those episodes nearly disappeared altogether. So after about 24 hours of various phone calls, we got our oxygen and supplies on Friday, December 1. She only needs 1/32 of a liter per minute, and she only needs it at night, but we haven't QUITE convinced her that it is in her best interest to keep the cannula in!
Now that it's been over a week, we have a bit of a regimen...unfortunately, it still does not include the boots and bar, which seemed to be a bridge too far in getting her to sleep. So we are working on giving her some B&B time in the day until we can finish this transition with the oxygen. It works best when she is pretty sleepy if not already asleep and we can sneak the cannula under her nose and secure it onto her cheek patches.
We are making incremental progress...while we are still waking multiple times at night, it does seem to be less often, and it seems we all get deeper sleep when we are sleeping. Last night was the best yet...though it took a bit of time to settle her down, Verity slept maybe 2 hours, woke briefly, slept an hour and 20 minutes, had an absolute meltdown over the cannula from 1:50 - 2:15am, finally fell asleep again, and didn't wake up until nearly 9:00 this morning!!
I will end this update here, as the GI issues warrant a separate post...but meanwhile, we praise God for revealing the apnea to us sooner rather than later and for allowing us to get started helping Verity on the road (hopefully) to better sleep patterns.
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