This is the birthday time of year at our house Peg's on Tuesday and Emily's today. Since we had not planned on being in Seattle we are a bit short on birthday cakes and cards but are still having fun talking about birthdays past and plans for future ones. There is one big present today: Emily is being discharged from UWMC this afternoon. This is a good thing. On Wednesday Emily had a small capsule placed in hers esophagus to measure the acid levels from reflux. The data is sent to a small recording device worn around the neck. This goes on for 48 hours. The data will then help make the decision about a major surgery possibly next Tuesday. This would basically redo the opening into the stomach to limit reflux. It's a pretty big deal. This is to hopefully reduce damage by reflux to the lungs. A major consideration is that she is considered a high risk candidate for surgery because of decreased lung function. Each time under is a worry. Yesterday's procedure also required full anesthesia but was for a very short time. It took her most of the day to fully wake as some of the post surgery anti nausea meds really made her sleepy.
We will remain in Seattle til the test is finished on Friday. We will stay here in anticipation of the surgery on Tuesday. Hopefully the hospital stay has calmed things down and Emily can rest and gain strength for the next step.
Hello to all from us three.
Thursday, September 29, 2016
Today is Emily's Birthday !
This is the birthday time of year at our house Peg's on Tuesday and Emily's today. Since we had not planned on being in Seattle we are a bit short on birthday cakes and cards but are still having fun talking about birthdays past and plans for future ones. There is one big present today: Emily is being discharged from UWMC this afternoon. This is a good thing. On Wednesday Emily had a small capsule placed in hers esophagus to measure the acid levels from reflux. The data is sent to a small recording device worn around the neck. This goes on for 48 hours. The data will then help make the decision about a major surgery possibly next Tuesday. This would basically redo the opening into the stomach to limit reflux. It's a pretty big deal. This is to hopefully reduce damage by reflux to the lungs. A major consideration is that she is considered a high risk candidate for surgery because of decreased lung function. Each time under is a worry. Yesterday's procedure also required full anesthesia but was for a very short time. It took her most of the day to fully wake as some of the post surgery anti nausea meds really made her sleepy.
We will remain in Seattle until the test is finished on Friday. We will stay here in anticipation of the surgery on Tuesday. Hopefully the hospital stay has calmed things down and Emily can rest and gain strength for the next step.
Hello to all from us three.
Tuesday, September 27, 2016
Update from UWMC our Home away from Home
Hello All. This is from Keith. I think many are keeping up to date via Face Book but Emily wants to keep this Blog a bit more current. My last post was at the end of August. It is now September 26th.(now the 27th ran out of steam late last night) We are back in Seattle at UWMC and have been since last Wednesday. There was also another three day trip to UWMC in mid month. We may be here through the end of the first week of October depending on tests this W-F that will help determine if another surgery is indicated on the 4th.
The last month has been very tough for Emily. We returned to Eugene after the sinus surgery and she had to endure a truly horrible multi day migraine. This set back her recovery dramatically. The last few weeks she has experienced continued reduction in lung function and profound nausea, weakness and fatigue. She requires oxygen 24 hours per day and needs to use a wheelchair to get around, even at home inside the house. This trip was to be Wednesday the 21st through Friday. This was a post op check for the sinus surgery and a meet and greet with a new GI surgeon. Unfortunately on Friday Emily was too ill and weak to travel back home. (These trips back and forth are a pain. The traffic is a nightmare and managing O2 and the chair make us a bit of a circus act.) Things didn't get better over the week end and on Sunday Emily had to go to the ER. She was dehydrated and exhausted. She was admitted that evening and remains at UWMC. She has received a lot of fluids via IVs. She is definitely feeling better but there is no discharge date yet as she needs to get stronger. All of this is compounded by the reduced lung function which makes just plain old breathing serious work. If strong enough she will have a 48 hour PH study to determine the extent of acid reflux, this will be on Weds the 28th. This is a procedure that places a device in the esophagus to measure what is going on. While the procedure is pretty straight forward it does require anesthesia which is a concern with her current lung function. Depending on what is observed Emily may have surgery on the 4th on her stomach to hopefully stop the reflux from occurring. This is a major surgery and again full anesthesia. There is quite a bit of caution at the moment. The most basic first step is for Emily to recover enough strength to be a reasonable candidate for surgery. Then we go from there weighing the risk vs benefit. Difficult days. Hopefully, tomorrow Emily can begin some very basic PT. Simple walking with assistance. Was to start today but just needed to rest. The reason for the sinus and stomach surgeries is to stop post nasal drip and acid reflux. That doesn't seem like the biggest deal but in the world of lung transplant it is. These things can spark forms of rejection. That is the working theory on the decrease of lung function.
Even though this is not a vacation Seattle is a beautiful place. Emily recalls fondly the several years she lived here. From the wing where here room is the views are special. One way is Huskie Stadium with the lake just behind. The other way we look down on the Montlake Cut and can see the racing shells training.
It is now mid morning of the 27th. I am at UWMC with Emily and Peg is back at our room. She stayed at the hospital last night. We take turns. It was a rugged early morning with nausea and dry heaves. There is an unexplained pattern to the days. The very early hours tend to be just plain bad with the nausea then an exhausted sleep of many hours followed by several hours of feeling good into the late evening. In the early part of the day no appetite and then a good one. Got the medical folks stumped on why this occurs.
So these early fall days are special around our house. We usually go out for a family dinner to a favorite place. Most often Chefs Kitchen. Today is Peg's birthday and Thursday is Emily's. I think we will do something extra to celebrate this year once we are back in Eugene. I will post this now and hopefully make the link to FB. Please let other friends know so they can be up to date. As always it is great for to hear from folks on the comment section here or Emily is on Face Book a lot. The days and nights get long and any distraction is welcome.
The last month has been very tough for Emily. We returned to Eugene after the sinus surgery and she had to endure a truly horrible multi day migraine. This set back her recovery dramatically. The last few weeks she has experienced continued reduction in lung function and profound nausea, weakness and fatigue. She requires oxygen 24 hours per day and needs to use a wheelchair to get around, even at home inside the house. This trip was to be Wednesday the 21st through Friday. This was a post op check for the sinus surgery and a meet and greet with a new GI surgeon. Unfortunately on Friday Emily was too ill and weak to travel back home. (These trips back and forth are a pain. The traffic is a nightmare and managing O2 and the chair make us a bit of a circus act.) Things didn't get better over the week end and on Sunday Emily had to go to the ER. She was dehydrated and exhausted. She was admitted that evening and remains at UWMC. She has received a lot of fluids via IVs. She is definitely feeling better but there is no discharge date yet as she needs to get stronger. All of this is compounded by the reduced lung function which makes just plain old breathing serious work. If strong enough she will have a 48 hour PH study to determine the extent of acid reflux, this will be on Weds the 28th. This is a procedure that places a device in the esophagus to measure what is going on. While the procedure is pretty straight forward it does require anesthesia which is a concern with her current lung function. Depending on what is observed Emily may have surgery on the 4th on her stomach to hopefully stop the reflux from occurring. This is a major surgery and again full anesthesia. There is quite a bit of caution at the moment. The most basic first step is for Emily to recover enough strength to be a reasonable candidate for surgery. Then we go from there weighing the risk vs benefit. Difficult days. Hopefully, tomorrow Emily can begin some very basic PT. Simple walking with assistance. Was to start today but just needed to rest. The reason for the sinus and stomach surgeries is to stop post nasal drip and acid reflux. That doesn't seem like the biggest deal but in the world of lung transplant it is. These things can spark forms of rejection. That is the working theory on the decrease of lung function.
Even though this is not a vacation Seattle is a beautiful place. Emily recalls fondly the several years she lived here. From the wing where here room is the views are special. One way is Huskie Stadium with the lake just behind. The other way we look down on the Montlake Cut and can see the racing shells training.
It is now mid morning of the 27th. I am at UWMC with Emily and Peg is back at our room. She stayed at the hospital last night. We take turns. It was a rugged early morning with nausea and dry heaves. There is an unexplained pattern to the days. The very early hours tend to be just plain bad with the nausea then an exhausted sleep of many hours followed by several hours of feeling good into the late evening. In the early part of the day no appetite and then a good one. Got the medical folks stumped on why this occurs.
So these early fall days are special around our house. We usually go out for a family dinner to a favorite place. Most often Chefs Kitchen. Today is Peg's birthday and Thursday is Emily's. I think we will do something extra to celebrate this year once we are back in Eugene. I will post this now and hopefully make the link to FB. Please let other friends know so they can be up to date. As always it is great for to hear from folks on the comment section here or Emily is on Face Book a lot. The days and nights get long and any distraction is welcome.
Sunday, September 4, 2016
Well my worst fear about sinus surgery has been realized: I have the migraine from hell. Good news is my sats are back up to 97% on room air!!! (I was hovering at 92%). I am hardly needing the oxygen and I can breath SO well through my nose. It's crazy. I don't remember ever being able to breath like this through my nose. (I probably could as a small child, but that was a long time ago and I lacked the foresight to appreciate it in the moment).
On the less glamorous side of this diseases I am fighting off a bowel blockage. Chronic constipation is just part of CF but then you add and narcotics for post surgical pain and you have a recipe for disaster. (If you e never taken narcotics before constipation is one of the main side affects). I am trying to keep popping with max doses of miralax (that is the over the counter white powder you see a lot of commercials for in relation to IBS), magnesium citrate, and prune juice. (Prunes are magic for constipation). I have a round of Go-Lightly waiting for me at the pharmacy (that is the bowel prep for colonoscopies) if shit goes really sideways (heheheh) I am tolerating the norco (pain med) okay (everyone was worried if I would be able to keep pain meds down after my hellacious time in post op), but even though it not making me sick and doing its job for pain it shuts down your guts. One of the many Catch-22's of chronic illness life. All and all its just a wild party of constipation, migraine management, and bloody nasal lavages. Exciting times at Casa de Monfort.
On the less glamorous side of this diseases I am fighting off a bowel blockage. Chronic constipation is just part of CF but then you add and narcotics for post surgical pain and you have a recipe for disaster. (If you e never taken narcotics before constipation is one of the main side affects). I am trying to keep popping with max doses of miralax (that is the over the counter white powder you see a lot of commercials for in relation to IBS), magnesium citrate, and prune juice. (Prunes are magic for constipation). I have a round of Go-Lightly waiting for me at the pharmacy (that is the bowel prep for colonoscopies) if shit goes really sideways (heheheh) I am tolerating the norco (pain med) okay (everyone was worried if I would be able to keep pain meds down after my hellacious time in post op), but even though it not making me sick and doing its job for pain it shuts down your guts. One of the many Catch-22's of chronic illness life. All and all its just a wild party of constipation, migraine management, and bloody nasal lavages. Exciting times at Casa de Monfort.
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