I don't really know where to begin with this post other than to
say OH MY!!!!!! If you will recall, I think I posted last that we
have started to associate Izzy's stomach pain and vomiting with her
level of overall exhaustion. Well, last week tipped her completely
over the edge!
Two Fridays ago was the fun run at school. While Izzy was pushed in her wheel chair during the event, she decided to run a lap at the very end (the really and truly end as all of the kids were heading for snack before going to back to class). She had a ton of fun and smiled big, but it took a lot out of her.
Saturday she rested for the most part and got her army. Sunday was the Congenital Heart Walk! Again, we pushed Izzy in her wheelchair at the Walk, but the excitement of friends and the heart community gathering and just the fun of everything was so overwhelming for her. It really tired her out.
By Monday morning, Izzy was already in pain. I had to give her morphine before school. She complained of pain throughout the day at school, didn't go to recess and instead chose to rest. Never a good sign for a Monday. Then that night, Phin had to see the doctor for a cough and they didn't get home for dinner until bed time! Needless to say, she got less sleep than normal (about 10 hours instead of 11).
Two Fridays ago was the fun run at school. While Izzy was pushed in her wheel chair during the event, she decided to run a lap at the very end (the really and truly end as all of the kids were heading for snack before going to back to class). She had a ton of fun and smiled big, but it took a lot out of her.
Saturday she rested for the most part and got her army. Sunday was the Congenital Heart Walk! Again, we pushed Izzy in her wheelchair at the Walk, but the excitement of friends and the heart community gathering and just the fun of everything was so overwhelming for her. It really tired her out.
By Monday morning, Izzy was already in pain. I had to give her morphine before school. She complained of pain throughout the day at school, didn't go to recess and instead chose to rest. Never a good sign for a Monday. Then that night, Phin had to see the doctor for a cough and they didn't get home for dinner until bed time! Needless to say, she got less sleep than normal (about 10 hours instead of 11).
Tuesday, Izzy felt worse. I had to give her two doses of
morphine before school. She went to the office more and was just
miserable.
Wednesday, she spent about half of the day in and out of the clinic at school because she was in so much pain and couldn't concentrate. She wasn't eating anything; barely drinking. Dale left early to pick her up. Despite the great pain Izzy was in, she was even more angry that Dale picked her up from school. She did not want to leave!
Thursday, even though she had rested more the day before, she ate nothing in the morning (note the picture of the many things I made for her for breakfast that she didn't eat). Again, Izzy had a couple of doses of morphine to no real benefit. She again went to the clinic for most of the day with tons of pain and was sent home even earlier. She had to miss dance class.
Friday, she stayed home with Dale in hopes that rest would help her improve. She was simply miserable.
Izzy's hospice nurse came out to the house first thing in the morning and suggested we go up on the morphine to try to find a good dosage. Dale spent the day upping and upping morphine in hopes that the pain would be eased, so Izzy would drink and eat again. She didn't drink or eat much though and we didn't find a good morphine level. Izzy did get a lot of rest that day.
Saturday began okay. Izzy woke fairly early, but considering she napped the day before, we were okay with it. She didn't eat or drink much, but she wasn't complaining of too much either. She and I played games and had fun.
Izzy didn't eat very much lunch, but was interested in eating chocolate kisses. I gave her small pieces of apple dipped in caramel (lots of fat) and made her eat those to get chocolate kisses. Over a period of 30 minutes, she ate those and seemed to be doing well.
Then, she overdid it with Mike & Ikes and vomited. The rest is a horrible, horrible history.
Izzy vomited several more times before bed that night, including all of her meds. Her oxygen saturations (sats) fell below 90 at one point, so I had to put her oxygen on. I gave her morphine several times. She was weepy and sad and so, so angry. She would scream one second and cry the next. Nothing I could say or do was right. She was in complete and utter misery. Saturday night, she went to sleep around 7:00 (per the norm), but it wasn't restful. She was making noise frequently. I measured her sats around 11:00 pm and all was good--100% oxygen on 2 liters of oxygen with heart rate of 73. Around 3:15am, Izzy woke screaming and said she had to vomit. She couldn't, but was shivering like a leaf suddenly and uncontrollably, but no windows were open and the house was not cold. I checked her sats and she was at 82% oxygen without her oxygen on (not good). She fell asleep immediately, then woke 20 minutes later, vomiting what looked like pink mucus (also not good and not normal). She was shivering, but not feverish.
She woke up with bloody vomit every hour on the hour until 7:00 a.m., then slept until 10:00 a.m. We worked very hard to drink throughout the day and stay away from the ER because of the illnesses present there. She was so weak. I can't imagine what a virus would do to her. Thankfully, she listened to reason and drank.
This is Izzy's note, including the bottom line: "I am sick". It breaks my heart.
I took this picture to show Izzy how bad she looked, so she would drink. It worked more than anything else I had done.
Izzy did not eat on Sunday. She hadn't had a real Izzy meal since Tuesday. She is looking thin. She begged us to let her go to school today, but we just couldn't. Instead, she stayed home with Dale again today.
He reasoned with her all day; trying to convince her to drink and eat. He tried to continue upping the morphine to find a level that stopped the pain. Nothing worked.
Wednesday, she spent about half of the day in and out of the clinic at school because she was in so much pain and couldn't concentrate. She wasn't eating anything; barely drinking. Dale left early to pick her up. Despite the great pain Izzy was in, she was even more angry that Dale picked her up from school. She did not want to leave!
Thursday, even though she had rested more the day before, she ate nothing in the morning (note the picture of the many things I made for her for breakfast that she didn't eat). Again, Izzy had a couple of doses of morphine to no real benefit. She again went to the clinic for most of the day with tons of pain and was sent home even earlier. She had to miss dance class.
Friday, she stayed home with Dale in hopes that rest would help her improve. She was simply miserable.
Izzy's hospice nurse came out to the house first thing in the morning and suggested we go up on the morphine to try to find a good dosage. Dale spent the day upping and upping morphine in hopes that the pain would be eased, so Izzy would drink and eat again. She didn't drink or eat much though and we didn't find a good morphine level. Izzy did get a lot of rest that day.
Saturday began okay. Izzy woke fairly early, but considering she napped the day before, we were okay with it. She didn't eat or drink much, but she wasn't complaining of too much either. She and I played games and had fun.
Izzy didn't eat very much lunch, but was interested in eating chocolate kisses. I gave her small pieces of apple dipped in caramel (lots of fat) and made her eat those to get chocolate kisses. Over a period of 30 minutes, she ate those and seemed to be doing well.
Then, she overdid it with Mike & Ikes and vomited. The rest is a horrible, horrible history.
Izzy vomited several more times before bed that night, including all of her meds. Her oxygen saturations (sats) fell below 90 at one point, so I had to put her oxygen on. I gave her morphine several times. She was weepy and sad and so, so angry. She would scream one second and cry the next. Nothing I could say or do was right. She was in complete and utter misery. Saturday night, she went to sleep around 7:00 (per the norm), but it wasn't restful. She was making noise frequently. I measured her sats around 11:00 pm and all was good--100% oxygen on 2 liters of oxygen with heart rate of 73. Around 3:15am, Izzy woke screaming and said she had to vomit. She couldn't, but was shivering like a leaf suddenly and uncontrollably, but no windows were open and the house was not cold. I checked her sats and she was at 82% oxygen without her oxygen on (not good). She fell asleep immediately, then woke 20 minutes later, vomiting what looked like pink mucus (also not good and not normal). She was shivering, but not feverish.
She woke up with bloody vomit every hour on the hour until 7:00 a.m., then slept until 10:00 a.m. We worked very hard to drink throughout the day and stay away from the ER because of the illnesses present there. She was so weak. I can't imagine what a virus would do to her. Thankfully, she listened to reason and drank.
This is Izzy's note, including the bottom line: "I am sick". It breaks my heart.
I took this picture to show Izzy how bad she looked, so she would drink. It worked more than anything else I had done.
Izzy did not eat on Sunday. She hadn't had a real Izzy meal since Tuesday. She is looking thin. She begged us to let her go to school today, but we just couldn't. Instead, she stayed home with Dale again today.
He reasoned with her all day; trying to convince her to drink and eat. He tried to continue upping the morphine to find a level that stopped the pain. Nothing worked.
What is so frustrating is that Izzy wants to eat. She asks for
her favorite foods; takes a bits; and is full immediately. She is
just frustrated as we are. And she so emotional due to lack of
energy and feeling her own mortality acutely. And the nightmares
have been so bad. My happy, smilely girl is barely there. She told
us tonight that she doesn't like laughing at the dinner table. That
is not our girl. It is devastating.
It is also extraordinarily scary. Thankfully, it scared a new plan out of the doctors. Apparently, not keeping down heart meds for several days will make the cardiologist try something new. Izzy was started on a new med that was described as useful in treating stomach migraines. The cardiologist prescribed it in consultation with the gastroenterologist. The working theory is that Izzy's pain is caused by lack of blood flow to the gut due to heart failure. This medicine should decrease the pain and increase blood flow to the gut.
Izzy was first given the new med this afternoon after a horrible car ride to the pharmacy to pick it up. Needless to say, the medicine was lost within seconds of giving it. So an hour later, we gave it again. Izzy ate dinner. She had dessert. She took all of her evening meds. She hasn't vomited yet. We don't know if this is just a fluke or if it will really help. But we need it to help.
We will also be doing more for Izzy at school to help her rest throughout the day. She will be using the wheelchair to move between class and lunchroom, to go to specials, etc. She will take a nap after lunch. We need all of this to work. She won't last much longer at the rate she has been going over the last week. It has been a horrifying glimpse of what may be coming soon.
Thank you for thinking of our girl.
It is also extraordinarily scary. Thankfully, it scared a new plan out of the doctors. Apparently, not keeping down heart meds for several days will make the cardiologist try something new. Izzy was started on a new med that was described as useful in treating stomach migraines. The cardiologist prescribed it in consultation with the gastroenterologist. The working theory is that Izzy's pain is caused by lack of blood flow to the gut due to heart failure. This medicine should decrease the pain and increase blood flow to the gut.
Izzy was first given the new med this afternoon after a horrible car ride to the pharmacy to pick it up. Needless to say, the medicine was lost within seconds of giving it. So an hour later, we gave it again. Izzy ate dinner. She had dessert. She took all of her evening meds. She hasn't vomited yet. We don't know if this is just a fluke or if it will really help. But we need it to help.
We will also be doing more for Izzy at school to help her rest throughout the day. She will be using the wheelchair to move between class and lunchroom, to go to specials, etc. She will take a nap after lunch. We need all of this to work. She won't last much longer at the rate she has been going over the last week. It has been a horrifying glimpse of what may be coming soon.
Thank you for thinking of our girl.
Mel
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