On Friday Job had his third audiology appointment since April and was completely cleared of hearing loss concern! Yay!
Being off oxygen (12 days and counting) ought to help him retain less fluid in his ears (which caused the initial, though temporary, hearing loss) because his nose and ears will drain fluid more efficiently without air being forced into his nose.
I'm so grateful to now be able to firmly check this concern off our list as a non-issue!
Sunday, August 27, 2017
Thursday, August 17, 2017
Physical Therapy OFF Oxygen!
Job passed yet another of my little "tests": he made it through an entire physical therapy session OFF OXYGEN today!
At rest, Job has been 80-81 (the number climbs every few days!) but during PT he was more 77ish. So definitely lower during PT, but again, three weeks ago he'd be in the low 70s if exerting himself off oxygen.
At rest, Job has been 80-81 (the number climbs every few days!) but during PT he was more 77ish. So definitely lower during PT, but again, three weeks ago he'd be in the low 70s if exerting himself off oxygen.
Saturday, August 12, 2017
Tuesday, August 8, 2017
Early August Update
Job has been ripping off his "tender grip" cannula stickers about 5 times a day and unplugging his cannula from the tubing that's connected to his concentrator or his tank about 20 times a day. It's been exhausting keeping an eye on him and teaching him not to touch. As you can see in this photo, he's been off oxygen a fair bit lately because I cannot keep up with his busy little hands.
I've been having a difficult time getting accurate and consistent sat readings because he won't sit still and let me assess him, also... but I think, maybe, just maybe, we're seeing his numbers climb.
After two days of sitting in the high 80s on .5 lpm of oxygen, I've switched him down to .25 lpm and so far he's stayed in the low 80s.
Just a week and a half ago he was at 80 on .5 lpm.
I am struggling to keep cool and collected about this. I want to declare victory and let him rip off his cannula for good.
What changed? He's been on a new medication for the last 8 days called sildenafil. It's a vasodialator, used to treat pulmonary hypertension (high blood pressures in the lungs) - and, hopefully, lower Job's pressures in his Glenn.
During clinical trials, a "side effect" of this medication was discovered and now sildenafil is primarily known as its brand name, Viagra. Because of this, the medication is $$$$! I don't know if I've ever been as shocked as when I saw the price tag for one month's supply - so thankful insurance pays the entire amount!!
We were on sildenafil from November through January, hoping the extra blood flow from more dilated veins would affect his oxygen sats, but it didn't seem to make a difference (though he also was dealing with his significant AVMs), so it was DCed. His Glenn pressures in his December cath were acceptable, though, so when they spiked for his June cath, it was postulated that the only difference is this medication.
Job's blood pressure was especially low two weeks ago in clinic, and since this med affects BP, we went in this morning to check it again and determine whether or not we could safely stay on it and yay! We can!
It is an incredible hassle, however, and I have not had a good attitude about it because of how much extra work it is for me. It's been several hours of phone calls and a lot of paperwork to get a mail order pharmacy to fill his prescription (because $$$$) and while it's now set up, I will have to do some work for it every month.
The hardest thing, though, is jumping to four med times (up from two). And very specific med times. With our Q12 meds we had a bit of flexibility. Now we don't. I've missed several doses this week because I haven't adjusted well to this new regimine.
We see Cardiology on the 24th for an echo to hopefully see his Glenn pressures drop. I will be monitoring his sats quite closely until then too, because we would all love to see him be less dependent on oxygen. While that isn't why Job got on sildenafil, it would be a wonderful perk!
I appreciate the continued prayers for his health but covet them for my attitude. My stamina is wearing thin.
I've been having a difficult time getting accurate and consistent sat readings because he won't sit still and let me assess him, also... but I think, maybe, just maybe, we're seeing his numbers climb.
After two days of sitting in the high 80s on .5 lpm of oxygen, I've switched him down to .25 lpm and so far he's stayed in the low 80s.
Just a week and a half ago he was at 80 on .5 lpm.
I am struggling to keep cool and collected about this. I want to declare victory and let him rip off his cannula for good.
What changed? He's been on a new medication for the last 8 days called sildenafil. It's a vasodialator, used to treat pulmonary hypertension (high blood pressures in the lungs) - and, hopefully, lower Job's pressures in his Glenn.
During clinical trials, a "side effect" of this medication was discovered and now sildenafil is primarily known as its brand name, Viagra. Because of this, the medication is $$$$! I don't know if I've ever been as shocked as when I saw the price tag for one month's supply - so thankful insurance pays the entire amount!!
We were on sildenafil from November through January, hoping the extra blood flow from more dilated veins would affect his oxygen sats, but it didn't seem to make a difference (though he also was dealing with his significant AVMs), so it was DCed. His Glenn pressures in his December cath were acceptable, though, so when they spiked for his June cath, it was postulated that the only difference is this medication.
Job's blood pressure was especially low two weeks ago in clinic, and since this med affects BP, we went in this morning to check it again and determine whether or not we could safely stay on it and yay! We can!
It is an incredible hassle, however, and I have not had a good attitude about it because of how much extra work it is for me. It's been several hours of phone calls and a lot of paperwork to get a mail order pharmacy to fill his prescription (because $$$$) and while it's now set up, I will have to do some work for it every month.
The hardest thing, though, is jumping to four med times (up from two). And very specific med times. With our Q12 meds we had a bit of flexibility. Now we don't. I've missed several doses this week because I haven't adjusted well to this new regimine.
We see Cardiology on the 24th for an echo to hopefully see his Glenn pressures drop. I will be monitoring his sats quite closely until then too, because we would all love to see him be less dependent on oxygen. While that isn't why Job got on sildenafil, it would be a wonderful perk!
I appreciate the continued prayers for his health but covet them for my attitude. My stamina is wearing thin.
Tuesday, August 1, 2017
Pulmonology Consult
Southbound I5 traffic was particularly horrendous this afternoon, so after our inaugural pulmonology clinic, Job and I went to Magnuson Beach and quacked at ducks to wait out the worst traffic snarls.
It was fun to enjoy his happy smiles all by myself. I do get a lot of alone time with him, but it's usually dominated by appointments, not playing. I'm trying so hard to interact with Job as I would have with Ezra and Isaac at 16 months old instead of treating him like a little baby still. So I tried to ignore all of the medical things swirling in my head and we sat and talked about all sorts of fascinating things and read up on Seattle Parks history and the old Naval Base on Sand Point.
It's hard to actually forget the medical stuff, though. I had hoped that, if Job made it through his first two surgeries, we would just get to enjoy toddlerhood. Instead, he's staying healthy enough to stay out of the hospital but not healthy enough for his team of doctors to just forget about him for a while. In fact, we're adding new specialties!
I wanted pulmonology to come up with some magical solution today, though of course they didn't. They want a CT scan of his lungs as well as some additional testing but everything they suggested must be done under anesthesia so we'll probably wait a few months and do a cath plus their recommendations.
Almost three weeks ago Job had a repeat VFSS (swallow study) that showed no aspirations or penetrations! So we started weaning him off of his thickener that we have been adding to his bottles since February. We went from 1 packet for every 4 oz down to 1 packet for every 7oz, and in a few more days I was going to take it away entirely. So exciting!
But pulmonology said no, go back to fully thickened feeds. Despite such a good study, the risk is too great and his oxygen requirement is too confusing and too concerning to take him off thickener.
As with so many of these things (being on oxygen, adding a med and going up to 4 med times), thickening his feeds isn't that big of a deal in the grand scheme of things. One year ago when Job had just been moved up to the CICU after two RRTs, I sat in his hospital room wishing we could be home again, no matter how much work it would be to care for him outside hospital walls. So, perspective: we thicken bottles again! I'm going to grieve and then preach to myself until I find contentment.
I sat and summarized Job's medical history for pulmonology, hitting all the highlights because Job's collection of notes are... Overwhelming, shall we say. It's easy for me to do, because, as I told the pulmonology fellow, knowing this medical history is one of my full time jobs. I guess I gave up studying the history of Job Carr to now study the history of Job Parkinson.
I haven't gone through Job's history month by month like that for a long time and as hard as it is to recount his complications one after another, it's good for me to do so. We've been working through the Psalms in church and I've been struck again at the repetition in them.
Up until a year ago, I would be quick to roll my eyes because how many times do I need to read that God brought the Israelites out of Egypt? But I've been learning that I DO need to hear it over and over again. I need to frequently revisit each of Job's trials so that I can marvel at how we have made it through each and every one. Sometimes with deep scars (literal and figurative!), but always through.
Now I gravitate to the repetitive Psalms (the sadder the better!) and find such encouragement (and conviction!). I can't actually point a disgusted finger at the forgetful and complaining Israelites because I rail at the disruption of my plans for Job daily, if not hourly. I don't want to waste all this suffering by complaining and disobeying. I do feel like we're out wandering in the wilderness right now, medically speaking. Out of Egypt, but not in the Promise Land. And I'm tempted to quarrel with God and not trust His provision
"I am the Lord your God, who brought you up out of the land of Egypt. Open your mouth wide, and I will fill it." (Ps. 81:10)
It was fun to enjoy his happy smiles all by myself. I do get a lot of alone time with him, but it's usually dominated by appointments, not playing. I'm trying so hard to interact with Job as I would have with Ezra and Isaac at 16 months old instead of treating him like a little baby still. So I tried to ignore all of the medical things swirling in my head and we sat and talked about all sorts of fascinating things and read up on Seattle Parks history and the old Naval Base on Sand Point.
It's hard to actually forget the medical stuff, though. I had hoped that, if Job made it through his first two surgeries, we would just get to enjoy toddlerhood. Instead, he's staying healthy enough to stay out of the hospital but not healthy enough for his team of doctors to just forget about him for a while. In fact, we're adding new specialties!
I wanted pulmonology to come up with some magical solution today, though of course they didn't. They want a CT scan of his lungs as well as some additional testing but everything they suggested must be done under anesthesia so we'll probably wait a few months and do a cath plus their recommendations.
Almost three weeks ago Job had a repeat VFSS (swallow study) that showed no aspirations or penetrations! So we started weaning him off of his thickener that we have been adding to his bottles since February. We went from 1 packet for every 4 oz down to 1 packet for every 7oz, and in a few more days I was going to take it away entirely. So exciting!
But pulmonology said no, go back to fully thickened feeds. Despite such a good study, the risk is too great and his oxygen requirement is too confusing and too concerning to take him off thickener.
As with so many of these things (being on oxygen, adding a med and going up to 4 med times), thickening his feeds isn't that big of a deal in the grand scheme of things. One year ago when Job had just been moved up to the CICU after two RRTs, I sat in his hospital room wishing we could be home again, no matter how much work it would be to care for him outside hospital walls. So, perspective: we thicken bottles again! I'm going to grieve and then preach to myself until I find contentment.
I sat and summarized Job's medical history for pulmonology, hitting all the highlights because Job's collection of notes are... Overwhelming, shall we say. It's easy for me to do, because, as I told the pulmonology fellow, knowing this medical history is one of my full time jobs. I guess I gave up studying the history of Job Carr to now study the history of Job Parkinson.
I haven't gone through Job's history month by month like that for a long time and as hard as it is to recount his complications one after another, it's good for me to do so. We've been working through the Psalms in church and I've been struck again at the repetition in them.
Up until a year ago, I would be quick to roll my eyes because how many times do I need to read that God brought the Israelites out of Egypt? But I've been learning that I DO need to hear it over and over again. I need to frequently revisit each of Job's trials so that I can marvel at how we have made it through each and every one. Sometimes with deep scars (literal and figurative!), but always through.
Now I gravitate to the repetitive Psalms (the sadder the better!) and find such encouragement (and conviction!). I can't actually point a disgusted finger at the forgetful and complaining Israelites because I rail at the disruption of my plans for Job daily, if not hourly. I don't want to waste all this suffering by complaining and disobeying. I do feel like we're out wandering in the wilderness right now, medically speaking. Out of Egypt, but not in the Promise Land. And I'm tempted to quarrel with God and not trust His provision
"I am the Lord your God, who brought you up out of the land of Egypt. Open your mouth wide, and I will fill it." (Ps. 81:10)
Monday, July 24, 2017
Cardiology Update
Let's do medical updates by speciality! Cardiology first:
Dr. Files poured over Job's records and cath results this past month. Job, as we've said before, is keeping him on his toes. We got the preliminary results of the cath a month ago, but I've been eagerly anticipating the results of Dr. File's research.
I was desperately hoping for a "yep, cath results look great! See you in a few months!" sort of appointment. We've never had one of those appointments, but I keep hoping that NEXT time... I think I need to stop hoping and dial back my expectations, though I've said that before.
Job has three significant cardiac concerns at present:
1.) The pressures in his lung artery and Glenn are too high. (I'll come back to this.)
2.) His tricuspid valve regurgitation is moderate (and has been for months). He will need a valve replacement but we're hoping this leaking will continue to stay in the moderate range so we can wait to replace the cable when we need to do other work on his heart, rather than an "extra" OHS "just" for the valve.
3.) He continues to need oxygen, unlike most Glenn circulation kids with HLHS.
The interventionist who performed the cath was quick to point to Job's diaphragm as the primary explanation (and CERTAINLY it is a big factor) but it shouldn't affect Job so drastically. Actually, right now Dr. Files has three other kids between 1 and 2 years old, with HLHS and paralyzed left diaphragms, who sat 85 off oxygen. PT is working really hard to develop Job's accessory and intercostal muscles to help him breath deeply without the diaphragm (and I'll cover that in a future post), but Dr. Files isn't content to accept the diaphragm paralysis and subsequent plication as the only reason Job needs oxygen still.
I told him that I, emotionally, need to just believe Job will be on oxygen for the next few years. I can't handle the roller coaster of hoping he'll get off! only to be crushed by my disappointment after that next intervention fails too. Dr. Files is determined to keep trying things, so maybe one of these days something will work!
Circling back to Job's Glenn pressures... Job's June cath measured his Glenn pressure at 16, up from 12 in his Decemeber cath. This is too high to allow blood to flow easily and so now we begin a great deal of effort to lower this number. In fact, just to give an idea of how big of a deal this is, if his pressures stay this high, Job would be disqualified from the third planned OHS the Fontan. (This is because that surgery reconnect the veins and arteries of his lower body back into circulation. Since there is no pump, blood needs to flow passively but would not be able to with the high pressures in Job's Glenn at present.) Collateral veins will also likely start forming to "help" with the increased pressure - but because of Job's current circulation, those would need to be cauterized or coiled in another cath.
Why did his pressures rise so dramatically? The only thing we know is now different is that Job is off of one of the medications he was on back in December: the vasodialator, sildenafil. It's a very expensive prescription (because it's viagra and pharmacies can charge $$$$ for it) and it must be given 3-4 times a day, so we DCed it (back in the fall) because it didn't seem to be helping Job get off oxygen.
Sildenafil may help Job get off oxygen as well as lower his Glenn pressures, but it bumps us back to three med times/day and nine medications total. As well as some extra appointments in the next few weeks to monitor his blood pressure closely.
Also, for extra fun, Job's axillary fistula was not audible in his check up today, sending us quickly off to a (previously unplanned) echo. Echo results seem to show that the fistula is closing up. We will monitor this, but if it does close up Job will likely start forming AVMs again.
Bottom line? Job is complicated. We get to go back to monthly cardiology visits. We need another cath in a few months. We are up on meds and med times, not down.
So I probably don't need to tell you how disappointed I am. How tempting it is to sink into discouragement and frustration.
But then, Job plays with his brothers like this and I'm thrilled at how happy and active he is:
Dr. Files poured over Job's records and cath results this past month. Job, as we've said before, is keeping him on his toes. We got the preliminary results of the cath a month ago, but I've been eagerly anticipating the results of Dr. File's research.
I was desperately hoping for a "yep, cath results look great! See you in a few months!" sort of appointment. We've never had one of those appointments, but I keep hoping that NEXT time... I think I need to stop hoping and dial back my expectations, though I've said that before.
Job has three significant cardiac concerns at present:
1.) The pressures in his lung artery and Glenn are too high. (I'll come back to this.)
2.) His tricuspid valve regurgitation is moderate (and has been for months). He will need a valve replacement but we're hoping this leaking will continue to stay in the moderate range so we can wait to replace the cable when we need to do other work on his heart, rather than an "extra" OHS "just" for the valve.
3.) He continues to need oxygen, unlike most Glenn circulation kids with HLHS.
The interventionist who performed the cath was quick to point to Job's diaphragm as the primary explanation (and CERTAINLY it is a big factor) but it shouldn't affect Job so drastically. Actually, right now Dr. Files has three other kids between 1 and 2 years old, with HLHS and paralyzed left diaphragms, who sat 85 off oxygen. PT is working really hard to develop Job's accessory and intercostal muscles to help him breath deeply without the diaphragm (and I'll cover that in a future post), but Dr. Files isn't content to accept the diaphragm paralysis and subsequent plication as the only reason Job needs oxygen still.
I told him that I, emotionally, need to just believe Job will be on oxygen for the next few years. I can't handle the roller coaster of hoping he'll get off! only to be crushed by my disappointment after that next intervention fails too. Dr. Files is determined to keep trying things, so maybe one of these days something will work!
Circling back to Job's Glenn pressures... Job's June cath measured his Glenn pressure at 16, up from 12 in his Decemeber cath. This is too high to allow blood to flow easily and so now we begin a great deal of effort to lower this number. In fact, just to give an idea of how big of a deal this is, if his pressures stay this high, Job would be disqualified from the third planned OHS the Fontan. (This is because that surgery reconnect the veins and arteries of his lower body back into circulation. Since there is no pump, blood needs to flow passively but would not be able to with the high pressures in Job's Glenn at present.) Collateral veins will also likely start forming to "help" with the increased pressure - but because of Job's current circulation, those would need to be cauterized or coiled in another cath.
Why did his pressures rise so dramatically? The only thing we know is now different is that Job is off of one of the medications he was on back in December: the vasodialator, sildenafil. It's a very expensive prescription (because it's viagra and pharmacies can charge $$$$ for it) and it must be given 3-4 times a day, so we DCed it (back in the fall) because it didn't seem to be helping Job get off oxygen.
Sildenafil may help Job get off oxygen as well as lower his Glenn pressures, but it bumps us back to three med times/day and nine medications total. As well as some extra appointments in the next few weeks to monitor his blood pressure closely.
Also, for extra fun, Job's axillary fistula was not audible in his check up today, sending us quickly off to a (previously unplanned) echo. Echo results seem to show that the fistula is closing up. We will monitor this, but if it does close up Job will likely start forming AVMs again.
Bottom line? Job is complicated. We get to go back to monthly cardiology visits. We need another cath in a few months. We are up on meds and med times, not down.
So I probably don't need to tell you how disappointed I am. How tempting it is to sink into discouragement and frustration.
But then, Job plays with his brothers like this and I'm thrilled at how happy and active he is:
https://www.facebook.com/autumn.faee/videos/10100434599446470/
Saturday, July 22, 2017
Summertime!
Job has been enjoying his summer immensely! He loved being outside and in the water and our slightly more flexible schedule. Also, blueberries: is there anything more delicious than stuffing his mouth with blueberries? He certainly doesn't think so!
I haven't been consistent about posting lately, so I thought I would post this short happy update and save my long medical update(s) for later.
Lots has been happening, so I need to pull together all of my jumbled paper notes and write up something coherent. But we also have six appointments next week (cardiology, GI, pediatrician and therapies) and see pulmonology the week after that, so there will be even more to report.
I haven't been consistent about posting lately, so I thought I would post this short happy update and save my long medical update(s) for later.
Lots has been happening, so I need to pull together all of my jumbled paper notes and write up something coherent. But we also have six appointments next week (cardiology, GI, pediatrician and therapies) and see pulmonology the week after that, so there will be even more to report.
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