i am going to do a short update tonight, and as you can tell (no caps) this is me writing. my super guest blogger is getting a night off while he checks in on some things at home.
today was a long day.
i did not get much sleep at all last night.
i did not feel good through the night, had vomiting in the middle of the night, and then we had tests and vitals and then the sun was coming up.
i did get out for some walks today around the hallway, trying to get the strength up that i have lost in this last month. month. down for the count for a month. that is insane but that is the reality. my ass has been kicked. it is official.
but today, we got the huge feeding tube out of my nose, and eventually got a smaller one in - seems like whenever i leave here i will be taking a feeding tube connected to me. which i was hoping would not be the case.
the removal of the tube was not fun. crying. bloody nose, some more tears. then they got the smaller one in, more tears, and it got put it in wrong. so then we had do renter it in and pull the wire out. that wiped me out.
we went off the feed for a few hours so we would see if i got my own appetite back. i did a little but am still not eating much at all. we will see what tomorrow brings.
the tube feeding starts again in about an hour and will run through the night.
we will see what all of this means for a shot to go home tomorrow.
thanks for all of the love, mojo, messages, prayers. we really appreciate it. this last month has been really hard, i am hoping that we are really close to getting on the other side of it.
i miss my life.
i still believe that this year will be full of magic, it is just hard to see it from within these walls.
happy wednesday peeps.
anywhere i fight, you fight.
and there is no doubt we are currently fighting.
xoxo
++++ sidenote: they are letterpressing more "empathy, kindness, respect" shirts that i had wrote about in the blog a few weeks back - great cause - if you are interested, click here
Tuesday, March 14, 2017
Monday, March 13, 2017
Hospital... Day 4
Day 4 at the hospital brought some continued progress to get back to home. With the goal of having Alli off of the NG tube when we head home today was transitioning back to solid food and transitioning off of the NG tube. To be able to go out without a tube we need to make sure she can get a normal day's nutrition through solid foods (or with supplements). While it is important to get the full nutrients it also has to be a low-fat diet to try and keep the workload of the pancreas to a minimum. We haven't set a date to discharge but the hope is Tuesday or Wednesday depending on how it goes with the solid food.
We also met with a PT doctor to talk about exercises to help rebuild her strength up. We have been making laps around the hospital to help rebuild her stamina and strength as going almost a month without any real food really took it out of her.
Keep the good thoughts coming and we'll update tomorrow.
-B
We also met with a PT doctor to talk about exercises to help rebuild her strength up. We have been making laps around the hospital to help rebuild her stamina and strength as going almost a month without any real food really took it out of her.
Keep the good thoughts coming and we'll update tomorrow.
-B
Sunday, March 12, 2017
Hospital... Day 3
Day 3 of the hospital visit brought some continued steps forward. Last night was still a little rough but mainly as the steroids made it hard for Alli to get to sleep. The nausea was present some but she didn't experience the same hard time as on the first night. Alli has continued to be able to eat the liquid diets and is feeling hungrier so that is a good sign. Also, she handled the feed at the slow rate for 24 hours without any issues so they have been ramping up the amount they are giving her to try and build back her nutrition. She is almost up to the rate that the nutritionist set for a full dose and will continue the tube through the night (she can sleep while it keeps pumping).
Knock on wood, if the feeding continues to go well and depending on her blood work they may try and get for her to start eating solid food again tomorrow. How long the feeding tube stays in will depend on how that goes and how her body handles it. Whether she needs to swap out the tube for a smaller home version or it comes out together really depends on if she can handle eating a normal amount of if it needs to be supplemented with the feed for nutrition.
The nausea has also been manageable today. It comes on a little bit as it gets about time for her next dose of the meds but the nurses have done a great job of keeping up on it to make sure the meds stay on schedule.
The hopeful plan would be for us to head home on Tuesday. Lets keep our fingers crossed we keep going in the right direction for that to happen. There is a certain 8-year old girl we have both been missing immensely these last few days.
-B
Knock on wood, if the feeding continues to go well and depending on her blood work they may try and get for her to start eating solid food again tomorrow. How long the feeding tube stays in will depend on how that goes and how her body handles it. Whether she needs to swap out the tube for a smaller home version or it comes out together really depends on if she can handle eating a normal amount of if it needs to be supplemented with the feed for nutrition.
The nausea has also been manageable today. It comes on a little bit as it gets about time for her next dose of the meds but the nurses have done a great job of keeping up on it to make sure the meds stay on schedule.
The hopeful plan would be for us to head home on Tuesday. Lets keep our fingers crossed we keep going in the right direction for that to happen. There is a certain 8-year old girl we have both been missing immensely these last few days.
-B
Saturday, March 11, 2017
Hospital Update... Day 2
Day 2 of our hospital stay got off to a very rough start. Alli got sick at about 3am and was super nauseous. The NG tube that they put in... which was about the worst thing of yesterday... was on the larger side and kept triggering her gag reflect through the night so she never got any really good sleep either. Not the kind of night we had wanted after talking to the resident yesterday. After she got sick they also turned the tube off for the rest of the night to regroup in the am.
I started writing about all the gory details of the day but to be honest it was kind of a blur of doctors and nurses coming in, us explaining what is going on, etc. The cliff notes version is after the blood work, CT scan, reviews by the resident, the attending (who is a melanoma oncologist), the dietician, and a GI resident the best thinking is that Alli has a case of immuno-related pancreatitis that was most likely caused by the immunotherapy inflaming her pancreas.
They are attacking this on multiple fronts to try and get Alli back to feeling well. She is back on steroids to help dampen the effects of the immunotherapy is having on her pancreas. They also continue to provide her the nausea meds that have worked the best to try and stave off the nausea and have added a patch that stays on 24/7 as well. They did turn the feeding tube back on but with a different feed solution and have also had her on hydration none stop since this morning. Finally they also put her on a liquid, low-fat diet. All this trying to make life as easy as possible on her pancreas to calm it down.
Fingers crossed, knock on wood, any other superstition, she has been feeling better as the day went on. The nausea isn't gone but has been fairly mild. She has gotten more used to the NG tube... not sure she would have bet on that early this morning... and has been getting feed slowly since afternoon. She has also been able to have some chicken broth and jello as well and keep that down. We may be in here for a few more days but lets hope this keeps going in the direction we are going now. She may get to exchange her NG tube for a smaller version that is kept in while she is at home to help make sure she is getting enough nutrients in her diet until she is eating a full diet again.
More to come but as with last night please keep the good thoughts and prayers coming!
-B
I started writing about all the gory details of the day but to be honest it was kind of a blur of doctors and nurses coming in, us explaining what is going on, etc. The cliff notes version is after the blood work, CT scan, reviews by the resident, the attending (who is a melanoma oncologist), the dietician, and a GI resident the best thinking is that Alli has a case of immuno-related pancreatitis that was most likely caused by the immunotherapy inflaming her pancreas.
They are attacking this on multiple fronts to try and get Alli back to feeling well. She is back on steroids to help dampen the effects of the immunotherapy is having on her pancreas. They also continue to provide her the nausea meds that have worked the best to try and stave off the nausea and have added a patch that stays on 24/7 as well. They did turn the feeding tube back on but with a different feed solution and have also had her on hydration none stop since this morning. Finally they also put her on a liquid, low-fat diet. All this trying to make life as easy as possible on her pancreas to calm it down.
Fingers crossed, knock on wood, any other superstition, she has been feeling better as the day went on. The nausea isn't gone but has been fairly mild. She has gotten more used to the NG tube... not sure she would have bet on that early this morning... and has been getting feed slowly since afternoon. She has also been able to have some chicken broth and jello as well and keep that down. We may be in here for a few more days but lets hope this keeps going in the direction we are going now. She may get to exchange her NG tube for a smaller version that is kept in while she is at home to help make sure she is getting enough nutrients in her diet until she is eating a full diet again.
More to come but as with last night please keep the good thoughts and prayers coming!
-B
Friday, March 10, 2017
Hospital Stay
Unfortunately Alli's stomach just does not want to cooperate even with the steroids and a couple different medications we have tried this week. Since the new meds still weren't making it to where she could eat more than a couple bites a food a day we decided to admit her to the hospital to try and get her body some nutrition. Definitely not where we wanted to be but hopefully this will be the first step in getting her nutrition levels up and her body recovering to where she can get back to eating more normally.
So off to the ER we went this morning. We originally had thought she would get a TPN line that would give her nutrients directly into her bloodstream. After talking with doctors at UW we decided to first try a NG line that has a lower risk of complications. The NG tube is essentially a small feeding tube that goes through her nose, through her stomach, and into her small intestine. They then can provide her a feeding solution that bypasses her stomach and hopefully allows her to get more than just a couple bites of food and some nutrition into her body.
They are also going to do a CT scan shortly to see if they can see anything that would be causing the nausea. In the NG tube they will slowly start giving her a feed solution tonight and through the night. Depending on how it takes they will continue to increase the amount through the weekend and routinely check her bloodwork to see how her body is responding to the nutrients. We'll see how it goes over the weekend and figure out a plan for the next steps and going home.
Please keep sending us the good thoughts and prayers; we'll take everyone of them.
-B
So off to the ER we went this morning. We originally had thought she would get a TPN line that would give her nutrients directly into her bloodstream. After talking with doctors at UW we decided to first try a NG line that has a lower risk of complications. The NG tube is essentially a small feeding tube that goes through her nose, through her stomach, and into her small intestine. They then can provide her a feeding solution that bypasses her stomach and hopefully allows her to get more than just a couple bites of food and some nutrition into her body.
They are also going to do a CT scan shortly to see if they can see anything that would be causing the nausea. In the NG tube they will slowly start giving her a feed solution tonight and through the night. Depending on how it takes they will continue to increase the amount through the weekend and routinely check her bloodwork to see how her body is responding to the nutrients. We'll see how it goes over the weekend and figure out a plan for the next steps and going home.
Please keep sending us the good thoughts and prayers; we'll take everyone of them.
-B
Monday, March 6, 2017
Paused
While the last post was sharing some good news, unfortunately I don't have much good news to share today. Today was supposed to be the 4th and final treatment of the two drug cocktail but we ended up having to pause the treatment as we haven't got over the nausea hurdle and add a steroid to the nausea meds Alli has been taking.
With Alli's clear brain MRI last week and her bloodwork coming back mostly normal this week the nausea can't be traced back to something in her brain (thank you) or to the treatment meds causing some issues with a gland or other organ. Since the nausea got progressively worse as she went through the first three treatments the best idea is that the nausea is an acute reaction to the drugs themselves. Adding the steroid will dampen the effect of the drugs but hopefully also will allow Alli to get past the nausea and get back her nutrition level.
The decision to not do the treatment today was a tough one. While the bloodwork came back mostly normal, the one part that didn't come back normal was the one that was correlated to her nutrition level... kinda obvious that one might be in the tank when she has gone almost 3 weeks without eating/ drinking very much. And with nausea getting worse with every treatment and with how bad it is already it was hard to picture getting worse and getting through it without going on steroids anyway.
So the plan is for her to go on the steroids/ nausea drug combo to try and kick the nausea away and come back in 3 weeks to take the 4th dose. There will be a taper down like last time with the steroids but it will be based on how Alli feels with the nausea, not on a blood level like it was before. Part of the thinking was getting her back to eating and out of this hell, but also if she had the 4th dose and then it got worse we might be on the steroids anyway. Hopefully this allows her to get through this nausea cycle and then allows her to get the 4th dose in 3 weeks.
Alli did also want to pass along a thank you for all the kind messages she has been sent. While she's hasn't been able to reply she says she hopefully will be able to get to them as she exits this nausea hell.
Also, thank you for all the good wishes for Kimmy. She was discharged from the hospital on Saturday and is recovering well from home.
-B
With Alli's clear brain MRI last week and her bloodwork coming back mostly normal this week the nausea can't be traced back to something in her brain (thank you) or to the treatment meds causing some issues with a gland or other organ. Since the nausea got progressively worse as she went through the first three treatments the best idea is that the nausea is an acute reaction to the drugs themselves. Adding the steroid will dampen the effect of the drugs but hopefully also will allow Alli to get past the nausea and get back her nutrition level.
The decision to not do the treatment today was a tough one. While the bloodwork came back mostly normal, the one part that didn't come back normal was the one that was correlated to her nutrition level... kinda obvious that one might be in the tank when she has gone almost 3 weeks without eating/ drinking very much. And with nausea getting worse with every treatment and with how bad it is already it was hard to picture getting worse and getting through it without going on steroids anyway.
So the plan is for her to go on the steroids/ nausea drug combo to try and kick the nausea away and come back in 3 weeks to take the 4th dose. There will be a taper down like last time with the steroids but it will be based on how Alli feels with the nausea, not on a blood level like it was before. Part of the thinking was getting her back to eating and out of this hell, but also if she had the 4th dose and then it got worse we might be on the steroids anyway. Hopefully this allows her to get through this nausea cycle and then allows her to get the 4th dose in 3 weeks.
Alli did also want to pass along a thank you for all the kind messages she has been sent. While she's hasn't been able to reply she says she hopefully will be able to get to them as she exits this nausea hell.
Also, thank you for all the good wishes for Kimmy. She was discharged from the hospital on Saturday and is recovering well from home.
-B
Thursday, March 2, 2017
Some Good News
When you get good news you have to share it, even if your exhausted and needing to go to sleep. Originally we thought we would have to wait on the results of the MRI of her brain until Monday when we have her regularly scheduled doctor appointment. Well we got a phone call today from the nurse and she said that Alli's MRI came back normal... woo hoo!!!!
While that was great news to hear, Alli's nausea decided it wanted to put a damper on the celebration and came back in full force today. The new meds we got yesterday really work on the nausea but also make her pretty loopy and very drowsy which doesn't work for her during the day. We got a half-dose to see if we could get to a happy medium. Here is hoping we can soon find the right combination and sequencing of meds to get the nausea away without putting her into a drowsy state that seems to be eluding us right now.
-B
While that was great news to hear, Alli's nausea decided it wanted to put a damper on the celebration and came back in full force today. The new meds we got yesterday really work on the nausea but also make her pretty loopy and very drowsy which doesn't work for her during the day. We got a half-dose to see if we could get to a happy medium. Here is hoping we can soon find the right combination and sequencing of meds to get the nausea away without putting her into a drowsy state that seems to be eluding us right now.
-B
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