Room 5E-07 Ped Onc has a much better view than our previous room, 5E-04. It's dark out but I think the trauma center helipad is right outside our window so perhaps we'll get to see a little "ER" up close and personal tomorrow. I hate to imagine the noise it makes though. We lasted a whole 24 hours at home before having to return to the Emergency Room where we were admitted upstairs. The morning started off well. For one thing, we managed not to screw up the NG tube last night. Michael slept on the floor of Sylvie's room, and I slept in the guest room next door. At about 5 am, Michael woke me to put more Compleat food in the pump thing. And we managed to give Sylvie all her meds on time, too! We did have a situation with the magnesium again which resulted in a scene straight from The Exorcist. I'll fast forward through a boring and uneventful day until Mary the home care nurse from Valley Hospital came over. She helped me through some basic questions until Michael got home which correlated to the exact minute that Sylvie first felt a little warm. And warmer. And warmer. Two thermometers later, Sylvie's fever was nearly 103. After calling the Pediatric Oncology department, they has us put anesthesizing cream on Sylvie's port site and sent us to the Pediatric Emergency Room. To make a long story short, here we are again. The resident assured me there's no way we're going home tomorrow either. Lovely. we still hadn't completely unpacked from the past 23 days...
We're having a sleep over in Room 07. Catherine, Sylvie and I are reading Sleeping Beauty and Carlos was kind enough to find a pull out chair-bed for Catherine to sleep on (also means Andy and Michael are having a party on Wastena Terrace too).
It's nearly 11 pm and we're waiting for Sylvie's transport peeps to come because she has to have an ultrasound of her liver. Right now. I might fall asleep standing up leaning on her stretcher.
Friday, March 6, 2009
Thursday, March 5, 2009
Home Sweet Home
We had been in the house for only 30 minutes before I had to call Gina in Pediatric Oncology with a dumb question about the feeding tube. It was essentially leaking everywhere which resulted in Michael carrying Sylvie and me following behind saying, "GROSS!" while holding a cup under the port to catch whatever was leaking. It really wasn't big deal.
Andy, Kitzchy and Samantha made a huge "WELCOME HOME SYLVIE" banner and arranged the biggest assortment of mylar Princess & Hello Kitty balloons that I've ever seen in the middle of our living room.
Just for the record, Sylvie did not want to come home. She was very content in her giant bed and TV. However she seemed genuinely excited to see Lucky and OJ who were equally thrilled to have Sylvie back. They eagerly await her uneaten meals. On that note, it's extremely important that Sylvie eats and drinks over the next three days because she will most likely not eat a morsel next Monday through Friday due to the chemo. The kitchen is stocked with all Sylvie's favorites including avocados, Applegate organic turkey breast, cous cous, cottage cheese, Greek yogurt and string cheese. I'm also going to start with the crazy high calorie, high protein yogurt and fruit shakes laced with pureed & disguised vegetables.
We were met by someone from Home Health who brought with an IV stand and dog biscuits for Lucky. He smelled like cigarettes. I practiced using the pump while Sibel followed along behind me.
Town & Country pharmacy delivered $100 worth of food in a can for Sylvie's NG tube, Tylenol with Codeine (for pain), Senna (for constipation), Bactrim (to prevent infection) and a numbing cream for me to apply before Sylvie gets her ports reaccessed next Monday.
It took the three of us to set up the NG tube and pump. The stethoscope which the hospital gave me is excruciatingly painful so I have to hold it in a wierd way as to not rip my ears. Then I have to pump some air into it and listen to make sure the tube is in her stomach. To be honest, 19 out of 20 times, I can't hear a thing. Somehow it worked on the first attempt tonight. Remember that phrase, "We're only given what we can handle." Well tonight I cannot handle that much.
Right now, Sylvie is asleep on the couch on a pillow 'wedge' with her pink blanket. Michael's alternating between Bill O'Reilly and ESPN while she sleeps beside him. He even bought [French] Kronenberg 1664 beer as a symbolic gesture. All those nights home alone and my husband has become a right winger. I am expecting our friends Sara & Paul to fly the Obama Air Force One plane, that I got their son Eli for his birthday, into Michael's forehead as their symbolic gesture.
We're not sure where the best place is for Sylvie to sleep this evening because it involves one of us either sleeping with her in the guest bedroom or sleeping on the floor in her bedroom. I am volunteering Michael for whichever one of these options because I've been up since 4 am.
Tomorrow, a home nurse is coming from Valley Hospital although I'm really not sure why. In an effort to be efficient and keep track of Sylvie's med schedule, I mapped it all out on the 2009 New Yorker desk calendar that my friend Cyndi gave me. Technically we only need to get through 3 days but being over-organized helps me deal with the fact that the last time the whole family sat on the couch in the family room together, she only had a tummy ache.
Andy, Kitzchy and Samantha made a huge "WELCOME HOME SYLVIE" banner and arranged the biggest assortment of mylar Princess & Hello Kitty balloons that I've ever seen in the middle of our living room.
Just for the record, Sylvie did not want to come home. She was very content in her giant bed and TV. However she seemed genuinely excited to see Lucky and OJ who were equally thrilled to have Sylvie back. They eagerly await her uneaten meals. On that note, it's extremely important that Sylvie eats and drinks over the next three days because she will most likely not eat a morsel next Monday through Friday due to the chemo. The kitchen is stocked with all Sylvie's favorites including avocados, Applegate organic turkey breast, cous cous, cottage cheese, Greek yogurt and string cheese. I'm also going to start with the crazy high calorie, high protein yogurt and fruit shakes laced with pureed & disguised vegetables.
We were met by someone from Home Health who brought with an IV stand and dog biscuits for Lucky. He smelled like cigarettes. I practiced using the pump while Sibel followed along behind me.
Town & Country pharmacy delivered $100 worth of food in a can for Sylvie's NG tube, Tylenol with Codeine (for pain), Senna (for constipation), Bactrim (to prevent infection) and a numbing cream for me to apply before Sylvie gets her ports reaccessed next Monday.
It took the three of us to set up the NG tube and pump. The stethoscope which the hospital gave me is excruciatingly painful so I have to hold it in a wierd way as to not rip my ears. Then I have to pump some air into it and listen to make sure the tube is in her stomach. To be honest, 19 out of 20 times, I can't hear a thing. Somehow it worked on the first attempt tonight. Remember that phrase, "We're only given what we can handle." Well tonight I cannot handle that much.
Right now, Sylvie is asleep on the couch on a pillow 'wedge' with her pink blanket. Michael's alternating between Bill O'Reilly and ESPN while she sleeps beside him. He even bought [French] Kronenberg 1664 beer as a symbolic gesture. All those nights home alone and my husband has become a right winger. I am expecting our friends Sara & Paul to fly the Obama Air Force One plane, that I got their son Eli for his birthday, into Michael's forehead as their symbolic gesture.
We're not sure where the best place is for Sylvie to sleep this evening because it involves one of us either sleeping with her in the guest bedroom or sleeping on the floor in her bedroom. I am volunteering Michael for whichever one of these options because I've been up since 4 am.
Tomorrow, a home nurse is coming from Valley Hospital although I'm really not sure why. In an effort to be efficient and keep track of Sylvie's med schedule, I mapped it all out on the 2009 New Yorker desk calendar that my friend Cyndi gave me. Technically we only need to get through 3 days but being over-organized helps me deal with the fact that the last time the whole family sat on the couch in the family room together, she only had a tummy ache.
Wednesday, March 4, 2009
Nurse Hughes
Melanie, Sylvie's nurse for today, gave me my very own stethoscope and taught me how to blow some air in the NG tube and listen for it in Sylvie's stomach. That was after John from Home Health came to teach me how to use the mechanical pump for Sylvie's NG tube when we are at home this weekend for 18 hours a day(i.e. 5pm to 11am). I can't help but dwell on the the fact that if Sylvie was actually eating food, I wouldn't have to learn all this! Sterile water, syringes, IV bags and lines-- this is not my cup of tea! Ellen and I sat down and went over the protocol for being at home with Sylvie and what to do in case of the million kinds of emergencies that could easily happen. Reflecting on, "We are only given what we can handle," I have to say that I am reaching my limit.
Sylvie has accumulated quite a bit of stuff over the past 22 days so I loaded up Sibel and Michael with bags of books, crayons, stuffed animals and so forth. My dad is coming by in the morning to help with that as well.
By the end of the day today, Sylvie's neutrophils climbed to 2000 which is FANTASTIC.
I'm eager to get home but pretty terrified at the same time. It's one thing to manage an IV pole and stuff in a hospital room but in our house... it will be a challenge. Only a 3-day challenge though since Round Two of chemo begins next Monday. You know what they say, "Don't unpack your bags!"
I know we just finished one out of four rounds of Sylvie's chemo but since I've Googled "hepatoblastoma" about a million times, I thought I could start something new to freak me out like "pediatric liver transplant." The CHOP website is really factual and the Cincinnati Children's Hospital is thoughtful enough to list that the procedure costs between $150,000 and $200,000. I don't think Michael has looked this up yet or he's intentionally not mentioned it to me.
On that note, I'm going to unfold my sheets and blankets and hit the sack.
Sylvie has accumulated quite a bit of stuff over the past 22 days so I loaded up Sibel and Michael with bags of books, crayons, stuffed animals and so forth. My dad is coming by in the morning to help with that as well.
By the end of the day today, Sylvie's neutrophils climbed to 2000 which is FANTASTIC.
I'm eager to get home but pretty terrified at the same time. It's one thing to manage an IV pole and stuff in a hospital room but in our house... it will be a challenge. Only a 3-day challenge though since Round Two of chemo begins next Monday. You know what they say, "Don't unpack your bags!"
I know we just finished one out of four rounds of Sylvie's chemo but since I've Googled "hepatoblastoma" about a million times, I thought I could start something new to freak me out like "pediatric liver transplant." The CHOP website is really factual and the Cincinnati Children's Hospital is thoughtful enough to list that the procedure costs between $150,000 and $200,000. I don't think Michael has looked this up yet or he's intentionally not mentioned it to me.
On that note, I'm going to unfold my sheets and blankets and hit the sack.
Homeward Bound
Great news. Sylvie's neutraphils are over 1000 which is amazing! Her hemoglobin is 9.6 which is passable, too. That being said the powers that be decided we can go home tomorrow and the only apparatus we will need to bring with us is the NG tube. Trust me that's enough and I'm a little nervous about it!
Last night was the best night yet-- alarms went off only from 3:22 am to 4:00 am. Sylvie didn't even wake up when they drew blood from her ports. I was so not used to sleeping for 5 hours that I felt drugged when I woke up to Denise the nurse standing beside me. Denise rocks. She has a 2 year old son (and older twins) and knows all of Sylvie's tricks. She flat out offered to donate a liver lobe to Sylvie (how couldn't you love someone who offers that?!) although she's not a blood match. Our other nurse, Susan, grew up in Ridgewood and went to Montessori Learning Center-- Mrs. Brophy was her teacher too! Small world.
Tomorrow, a nurse from Valley Hospital home health will show us the ropes. Since Sylvie has to be back at the hospital ready to go for Round 2 on Monday morning we do not need to give her shots at home. I'm awaiting some of the prescriptions (Tylenol #3, Bactrim, Compleat food and I'm sure there's more) to get a head start on that. We've been cleaning and disinfecting everything at home because we really need to create the most germ-free environment possible. No stuffy noses, sniffles or tummy aches allowed in 391 Wastena Terrace thru May! We have a box of face masks just in case although Slylvie is terrified of them. I thought for fun we could put some puffy stickers on them or draw animal faces to make them silly instead of scary. It's amazing what constitutes fun, right?
Besides the obvious challenges, it's hard spending so much time in the hospital because of the lack of privacy and ability to do selfish little personal things, like listen to music! I've been humming in my head the soundtrack to the movie "Serendipity" and a couple of Matthew Sweet songs that I love. My friend Mike told me there's a new Cake album this summer which is something for to look forward to.
It would really make my day if Sylvie would actually eat something today.
Once Sylvie's port needles have been removed, she can bathe, wear regular clothes and so forth. It's not that noticable unless Sylvie's shirtless. Then it might look like a misplaced breast implant since she's so teeny. That's the best way for me to describe it.
OK have to pack up a few things, fill the car with some stuff and run home.
Last night was the best night yet-- alarms went off only from 3:22 am to 4:00 am. Sylvie didn't even wake up when they drew blood from her ports. I was so not used to sleeping for 5 hours that I felt drugged when I woke up to Denise the nurse standing beside me. Denise rocks. She has a 2 year old son (and older twins) and knows all of Sylvie's tricks. She flat out offered to donate a liver lobe to Sylvie (how couldn't you love someone who offers that?!) although she's not a blood match. Our other nurse, Susan, grew up in Ridgewood and went to Montessori Learning Center-- Mrs. Brophy was her teacher too! Small world.
Tomorrow, a nurse from Valley Hospital home health will show us the ropes. Since Sylvie has to be back at the hospital ready to go for Round 2 on Monday morning we do not need to give her shots at home. I'm awaiting some of the prescriptions (Tylenol #3, Bactrim, Compleat food and I'm sure there's more) to get a head start on that. We've been cleaning and disinfecting everything at home because we really need to create the most germ-free environment possible. No stuffy noses, sniffles or tummy aches allowed in 391 Wastena Terrace thru May! We have a box of face masks just in case although Slylvie is terrified of them. I thought for fun we could put some puffy stickers on them or draw animal faces to make them silly instead of scary. It's amazing what constitutes fun, right?
Besides the obvious challenges, it's hard spending so much time in the hospital because of the lack of privacy and ability to do selfish little personal things, like listen to music! I've been humming in my head the soundtrack to the movie "Serendipity" and a couple of Matthew Sweet songs that I love. My friend Mike told me there's a new Cake album this summer which is something for to look forward to.
It would really make my day if Sylvie would actually eat something today.
Once Sylvie's port needles have been removed, she can bathe, wear regular clothes and so forth. It's not that noticable unless Sylvie's shirtless. Then it might look like a misplaced breast implant since she's so teeny. That's the best way for me to describe it.
OK have to pack up a few things, fill the car with some stuff and run home.
Tuesday, March 3, 2009
3 Week Anniversary
We commemorated Sylvie's three weeks with cancer and hospital stay today with lots of princess movies, Dora the Explorer, coloring books and stickers galore. I have to day, today did not suck. Highlights include:
- Sylvie's in a great mood FINALLY
- Very positive meeting with all of Sylvie's doctors HOORAY
- Might get to go home for the weekend YIPPEE
- Visit from Dr. Rosen, Sylvie's pediatrician THE BEST
- Custom-made Princess scrubs that Ann had custom made AWESOME
- Heather's organic stuffed peppers FANTASTIC
- Chocolate from Mast Brothers in Brooklyn courtesy of Michelle (funny b/c of my comments about their facial hair last Wednesday. Dark chocolate, marcona almonds and fleur de sel-- AMAZING!
I think I spent the majority of yesterday sitting in the blue vinyl chair in Sylvie's room and waiting. For tests. For doctors. For x-rays. Just waiting. I do not like to wait but part of the new me is to be patient. I have it down pretty well except for driving. The one mile on Essex Street from Route 17 to the entrance of Hackensack University Medical Center, for example, is a real test for it contains the worst drivers imaginable whether they're driving beat up cars or luxury SUVs. I digress-- we had a good day and I'd love to talk about it!
Sylvie's team, led by Dr. Appel arrived early for rounds and had pretty good news. Sylvie's neutrophil count was about 600, up from zero on Sunday. There are 5 types of white blood cells. Neutrophils protect against bacterial infections. Chemotherapy reduces this number to zero which is why Sylvie can't be exposed to any bacteria, viruses or germs. You and me-- our count is probably around 1000. In order for Sylvie to continue chemo, she needs at least 750. Sylvie gets a shot of Neupogen daily except for chemo days to build the count. With her counts on the rise, they expect her fever to discontinue, the sores in her mouth to heal. The rash isn't getting any worse although they did discontinue one antibiotic. Sylvie's getting a really small dose of morphine around the clock just to make her feel a little better, too. And if Sylvie feels better, we ALL feel better! The most recent blood cultures came back negative, too. In order to go home, Sylvie needs to have no fever and be eating. We're working on the food thing. Technically round two of chemo starts this Friday but Dr. Appel and Ellen want Sylvie to be in good spirits, have a few days or R&R at home and higher blood counts. So we might actually get to spend the weekend at Casa Hughes and postpone Round Two until Monday. I cannot tell you how thrilled we would be to spend the weekend home as a family.
Sylvie was in one of the happiest and silliest moods that I've ever seen today. She was so animated and actually nice to the nurses. A welcome change.
I ran home to see Lucky, change my clothes, grab some food and try to upload photos of Sylvie and the family on Picasa. Once I figure it out, there will be a neat slide show on PrincessSylvie. I was looking at photographs and came upon a folder of recent photos that Sibel took of Sylvie blowing out candles on a birthday cake. Um... Sylvie's birthday is May 12. Apparently she suckers Sibel into pretending it's her birthday and it also explains the half-eaten birthday cake was in our fridge last month. Sylvie is so obsessed with birthday candles and cakes-- we have HUNDREDS of candles at home and Sylvie calls the King's super market in Midland Park, "The Candle Store." $0.99 buys happiness. Note to self though: Must cancel Sylvie's birthday party that we already booked.
While we were making sticker pictures and coloring Belle's and Aurora's as present for Dad, Michael had a rough day at work with a water tower "situation." Hence I'm spending the night at the hospital again. I told him that in the likelihood that I donate my liver to Sylvie, I may need a hip replacement thanks to sleeping on the couch/bed. And then a recovery period at a monestary that practices a code of silence. In the time it took for me to type this at least 10-- oops now it's 16-- alarms went off.
- Sylvie's in a great mood FINALLY
- Very positive meeting with all of Sylvie's doctors HOORAY
- Might get to go home for the weekend YIPPEE
- Visit from Dr. Rosen, Sylvie's pediatrician THE BEST
- Custom-made Princess scrubs that Ann had custom made AWESOME
- Heather's organic stuffed peppers FANTASTIC
- Chocolate from Mast Brothers in Brooklyn courtesy of Michelle (funny b/c of my comments about their facial hair last Wednesday. Dark chocolate, marcona almonds and fleur de sel-- AMAZING!
I think I spent the majority of yesterday sitting in the blue vinyl chair in Sylvie's room and waiting. For tests. For doctors. For x-rays. Just waiting. I do not like to wait but part of the new me is to be patient. I have it down pretty well except for driving. The one mile on Essex Street from Route 17 to the entrance of Hackensack University Medical Center, for example, is a real test for it contains the worst drivers imaginable whether they're driving beat up cars or luxury SUVs. I digress-- we had a good day and I'd love to talk about it!
Sylvie's team, led by Dr. Appel arrived early for rounds and had pretty good news. Sylvie's neutrophil count was about 600, up from zero on Sunday. There are 5 types of white blood cells. Neutrophils protect against bacterial infections. Chemotherapy reduces this number to zero which is why Sylvie can't be exposed to any bacteria, viruses or germs. You and me-- our count is probably around 1000. In order for Sylvie to continue chemo, she needs at least 750. Sylvie gets a shot of Neupogen daily except for chemo days to build the count. With her counts on the rise, they expect her fever to discontinue, the sores in her mouth to heal. The rash isn't getting any worse although they did discontinue one antibiotic. Sylvie's getting a really small dose of morphine around the clock just to make her feel a little better, too. And if Sylvie feels better, we ALL feel better! The most recent blood cultures came back negative, too. In order to go home, Sylvie needs to have no fever and be eating. We're working on the food thing. Technically round two of chemo starts this Friday but Dr. Appel and Ellen want Sylvie to be in good spirits, have a few days or R&R at home and higher blood counts. So we might actually get to spend the weekend at Casa Hughes and postpone Round Two until Monday. I cannot tell you how thrilled we would be to spend the weekend home as a family.
Sylvie was in one of the happiest and silliest moods that I've ever seen today. She was so animated and actually nice to the nurses. A welcome change.
I ran home to see Lucky, change my clothes, grab some food and try to upload photos of Sylvie and the family on Picasa. Once I figure it out, there will be a neat slide show on PrincessSylvie. I was looking at photographs and came upon a folder of recent photos that Sibel took of Sylvie blowing out candles on a birthday cake. Um... Sylvie's birthday is May 12. Apparently she suckers Sibel into pretending it's her birthday and it also explains the half-eaten birthday cake was in our fridge last month. Sylvie is so obsessed with birthday candles and cakes-- we have HUNDREDS of candles at home and Sylvie calls the King's super market in Midland Park, "The Candle Store." $0.99 buys happiness. Note to self though: Must cancel Sylvie's birthday party that we already booked.
While we were making sticker pictures and coloring Belle's and Aurora's as present for Dad, Michael had a rough day at work with a water tower "situation." Hence I'm spending the night at the hospital again. I told him that in the likelihood that I donate my liver to Sylvie, I may need a hip replacement thanks to sleeping on the couch/bed. And then a recovery period at a monestary that practices a code of silence. In the time it took for me to type this at least 10-- oops now it's 16-- alarms went off.
Monday, March 2, 2009
Sleeping at the Hospital is Like Camping
Every day Sylvie is thrown a challenge which she rises above and truly humbles me. Today's "Tribal Council" was the reinsertion of the NG tube. We opted to switch nostrils mostly because Sylvie's skin was so irritated from the sticky tape on the left side of her face. So when Sylvie's favorite nurse Jessica asked me to carry Sylvie into the treatment room [of doom], I anticipated it being more than Jessica, Dr. Andrea, Sylvie and myself. I saw the different size NG tubes on the sterile stainless steel tray and hoped that Sylvie didn't catch a glimpse. This would scare Jack Bauer. But when they asked me to put Sylvie onto the table, on her back, and hold her head perfectly still between my hands, I let them know that I was not the right woman for the job. In came Karen, Sylvie's next most-favorite nurse. The first tube was too big and I was mortified that Sylvie might have endured pain. I gently squeezed Sylvie's feet so she'd know I was there. I thought if I made direct eye contact with her, I might then see the tube being inserted and immediately throw up all over Sylvie's pink blanket. The doctor went back to the small tube which to give you any indication of size, is meant for the NICU babies. Afterwords, we retreated back to the safety of Room 5E-04. Sylvie was wiped out. Once back in bed, Sylvie turned onto her side and went to sleep. We were waiting for the mobile x-ray giraffe to come to x-ray her stomach just to make sure the tube was in place. Minutes later, Sylvie's nose rubbed onto the mattress and out popped the NG tube. For lack of better words, shit. Half an hour later we were forced to return to the treatment room [of doom] and without much fanfare, in went the tube. Sylvie's bravery is inspiring. We're trying the 'real food' version today. I considered calling Angelika Kitchen and having them pureee and strain a Dragon Bowl for Sylvie but thought Michael might get very annoyed at me.
We had an impromptu follow up meeting with Dr. Appel again, followed by the head of infectious diseases to look at Sylvie's awful rash and make some kind of determination. I'm not a doctor (but I play one on TV) but one would think that myself, Michael and his mom having allergies to certain antibiotics would raise an eyebrow or two. They did discontinue one of the antibiotics just in case. I thought it was humorous when a nurse asked me about the hippie sulfate-free baby soap that I wash Sylvie with (albeit infrequently since we're here). I mentioned to her the additives to Sylvie's NG tube food since they contain a ton of preservatives. I want to ask Dr. Rosen about the rash tomorrow. He might have a few good suggestions.
Now that Sylvie's "numbers" are getting better and her liver is functioning better, they opted to also provide nutrients to Sylvie through her port. It's called TPN (Total parenteral nutrition). It looks like Gatorade. The good news about this new NG tube and the TPN is that there will be 1 less alarm to go off every 90 minutes. Yeay. I'm so happy I could go to sleep right now. Small victory for mom.
After the dramas of the day, we gave Sylvie some morphine and wouldn't you know it, our old Sylvie was back! She was hilarious, vivacious, silly and adorable. Michael, Sylvie and I pretended to bake a pretend cake (like the fairies in Sleeping Beauty), opened presents, made magnetic ballerinas. Sylvie even commented that my dinner smelled good. This is big news for the family Hughes. Perhaps tomorrow she'll even eat something??? Stranger things have happened.
Only one more day of toxic tushy and we can stop wearing gloves for perhaps a whole week.
Sleeping at the hospital reminds me of camping. I roll out sheets & blankets, I shiver all night and my back kills in the morning.
We had an impromptu follow up meeting with Dr. Appel again, followed by the head of infectious diseases to look at Sylvie's awful rash and make some kind of determination. I'm not a doctor (but I play one on TV) but one would think that myself, Michael and his mom having allergies to certain antibiotics would raise an eyebrow or two. They did discontinue one of the antibiotics just in case. I thought it was humorous when a nurse asked me about the hippie sulfate-free baby soap that I wash Sylvie with (albeit infrequently since we're here). I mentioned to her the additives to Sylvie's NG tube food since they contain a ton of preservatives. I want to ask Dr. Rosen about the rash tomorrow. He might have a few good suggestions.
Now that Sylvie's "numbers" are getting better and her liver is functioning better, they opted to also provide nutrients to Sylvie through her port. It's called TPN (Total parenteral nutrition). It looks like Gatorade. The good news about this new NG tube and the TPN is that there will be 1 less alarm to go off every 90 minutes. Yeay. I'm so happy I could go to sleep right now. Small victory for mom.
After the dramas of the day, we gave Sylvie some morphine and wouldn't you know it, our old Sylvie was back! She was hilarious, vivacious, silly and adorable. Michael, Sylvie and I pretended to bake a pretend cake (like the fairies in Sleeping Beauty), opened presents, made magnetic ballerinas. Sylvie even commented that my dinner smelled good. This is big news for the family Hughes. Perhaps tomorrow she'll even eat something??? Stranger things have happened.
Only one more day of toxic tushy and we can stop wearing gloves for perhaps a whole week.
Sleeping at the hospital reminds me of camping. I roll out sheets & blankets, I shiver all night and my back kills in the morning.
Snow Day
Looking outside at the blizzard, for the first time I'm ok with being trapped inside the hospital for over 24 hours straight! I keep trying to get Sylvie to look outside but she's pretty uninterested right now.
Last night was the usual. Sleep for a couple of hours and then, well, madness. The attending physician introduced himself to me right before Sylvie fell asleep; he seemed a little arrogant for being at oldest, 30. Sylvie's respiratory rate (i.e. how hard it is for her to breathe) gets pretty high at night and we agreed if it hovered between 60-85 that we would give Sylvie some morphine. Everything was relatively normal until some time after 2 am when Sylvie's NG tube continued to clog. The nurse unsuccessfully tried to flush the tube. In the past, this has always worked. On the other hand Sylvie had finally fell into a deep sleep. The nurse returned, said she had called the doctor and they would do one of three things:
1). Replace the tube with a new one
2). Remove the tube and deal with a new one in the morning
3). X-Ray her stomach to see if the tube had coiled
And I told her I'd do one thing period: NOTHING. Since she wasn't getting any food through the NG tube anyway, I didn't want to have to wake Sylvie and thus torture her. Somehow I could take it better coming from one of the doctors I already knew and sort-of liked. So the doctor comes in; I have no idea what time it is. He said, "Let's remove it." I said, "Wait until the morning." And that was it. Less dramatic than I had played it out in my mind.
I think the beeps and alarms will drive me insane. There are 4 things attached to Sylvie's IV stand that make noise. On the other side of her bed is the vital's monitor which makes sounds practically non-stop. I think Michael may need to run another marathon when this is said and done. I'll need to go to a silent yoga retreat for a week or at least sleep with earplugs, an eye mask and a very warm blanket.
We woke up around 7 am. Sylvie had a 101 fever again. The blotchiness that we noticed on Sylvie's leg yesterday was now a full blown scary-looking but non-itchy rash covering her legs, arms, scalp and forehead. Can't this kid get a break? So we tried to give her Tylenol which Sylvie spit all over the place. Twice. The resident suggested a suppository and both myself and the nurse said GOOD LUCK. They gave Sylvie some Benadryl which will more or less confirm that it's an allergic reaction to one of the many antibiotics.
To my surprise, she had a few moments of being in a great mood and we played with the Dora 3-D Deluxe Play Set that one of the nurses gave her yesterday as a consolation prize after they cleaned and changed her crusty port.
In addition, Sylvie's hair is shedding like crazy. It's all over the place. Combined with the sticky Tylenol that she spit everywhere, it's adhered to her fingers, face and blanket. Yesterday was Red Devil chemo day and that's the leading culprit in her chemotherapy cocktail that causes hair loss. Note to self: Must wear hazmat purple rubber gloves for 48 hours because of toxic tushy. I can't remember if we gave a few of these or the regular latex gloves to Kitzchy because she was cutting onions :-).
One of the doctors just stopped by and said that Sylvie's blood counts are going up which is good. They increase towards the end of the chemo cycle and then get knocked down again. That means we have 5 days in which Sylvie might be feeling better. In addition, Sylvie's doctors said that she also should be feeling better because the tumors are smaller within 30 days. Something to look forward to.
Sylvie finally fell back asleep thanks to the Benadryl. I'm sure someone will come wake her up any minute because that's how it works in hospitals. I'm so curious how this will affect her sleeping once we finally go home. On one hand she will be in her crib or the guest bedroom queen size bed as opposed to the hospital Craftmatic Adjustable Bed with an LG Flatscreen TV mounted on the wall. Once again, she looks so peaceful.
I think Dr. Harris is back this week. Looking forward to seeing him later.
Last night was the usual. Sleep for a couple of hours and then, well, madness. The attending physician introduced himself to me right before Sylvie fell asleep; he seemed a little arrogant for being at oldest, 30. Sylvie's respiratory rate (i.e. how hard it is for her to breathe) gets pretty high at night and we agreed if it hovered between 60-85 that we would give Sylvie some morphine. Everything was relatively normal until some time after 2 am when Sylvie's NG tube continued to clog. The nurse unsuccessfully tried to flush the tube. In the past, this has always worked. On the other hand Sylvie had finally fell into a deep sleep. The nurse returned, said she had called the doctor and they would do one of three things:
1). Replace the tube with a new one
2). Remove the tube and deal with a new one in the morning
3). X-Ray her stomach to see if the tube had coiled
And I told her I'd do one thing period: NOTHING. Since she wasn't getting any food through the NG tube anyway, I didn't want to have to wake Sylvie and thus torture her. Somehow I could take it better coming from one of the doctors I already knew and sort-of liked. So the doctor comes in; I have no idea what time it is. He said, "Let's remove it." I said, "Wait until the morning." And that was it. Less dramatic than I had played it out in my mind.
I think the beeps and alarms will drive me insane. There are 4 things attached to Sylvie's IV stand that make noise. On the other side of her bed is the vital's monitor which makes sounds practically non-stop. I think Michael may need to run another marathon when this is said and done. I'll need to go to a silent yoga retreat for a week or at least sleep with earplugs, an eye mask and a very warm blanket.
We woke up around 7 am. Sylvie had a 101 fever again. The blotchiness that we noticed on Sylvie's leg yesterday was now a full blown scary-looking but non-itchy rash covering her legs, arms, scalp and forehead. Can't this kid get a break? So we tried to give her Tylenol which Sylvie spit all over the place. Twice. The resident suggested a suppository and both myself and the nurse said GOOD LUCK. They gave Sylvie some Benadryl which will more or less confirm that it's an allergic reaction to one of the many antibiotics.
To my surprise, she had a few moments of being in a great mood and we played with the Dora 3-D Deluxe Play Set that one of the nurses gave her yesterday as a consolation prize after they cleaned and changed her crusty port.
In addition, Sylvie's hair is shedding like crazy. It's all over the place. Combined with the sticky Tylenol that she spit everywhere, it's adhered to her fingers, face and blanket. Yesterday was Red Devil chemo day and that's the leading culprit in her chemotherapy cocktail that causes hair loss. Note to self: Must wear hazmat purple rubber gloves for 48 hours because of toxic tushy. I can't remember if we gave a few of these or the regular latex gloves to Kitzchy because she was cutting onions :-).
One of the doctors just stopped by and said that Sylvie's blood counts are going up which is good. They increase towards the end of the chemo cycle and then get knocked down again. That means we have 5 days in which Sylvie might be feeling better. In addition, Sylvie's doctors said that she also should be feeling better because the tumors are smaller within 30 days. Something to look forward to.
Sylvie finally fell back asleep thanks to the Benadryl. I'm sure someone will come wake her up any minute because that's how it works in hospitals. I'm so curious how this will affect her sleeping once we finally go home. On one hand she will be in her crib or the guest bedroom queen size bed as opposed to the hospital Craftmatic Adjustable Bed with an LG Flatscreen TV mounted on the wall. Once again, she looks so peaceful.
I think Dr. Harris is back this week. Looking forward to seeing him later.
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