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.
Monday, March 2, 2009
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.
Saturday, February 28, 2009
No News is Good News
Sylvie's doctors said she'd feel crappy for about a month. It's been 18 days but we are anxious to see the silly, happy, crazy Sylvie that we know and love. Don't get me wrong, we still love the bossy, sleepy Sylvie but it's really hard to watch and experience day in/ day out.
After being at the hospital for about 2 days straight, I went to yoga this morning, dedicated my practice to Sylvie getting well, cruised home to see my furry friends and then back to Hackensack. Within 5 minutes of arriving at the hospital, I fell asleep on my couch bed for an hour and half. Note to self: Must eat at regular intervals.
I'm playing Fountains of Wayne "Hackensack" right now just because a). I like the band and b). There aren't too many songs called or about Hackensack. Not my favorite FOW song but nice melody. I love the sweet "Valley Winter Song" because it reminds me of Vermont and we won't be back for a long time I imagine.
The good news about Saturdays is no visits from infectious disease doctors. No more reminders about bacteria, fevers and infections. They're pretty nice despite the altercation over Sylvie not having received a chicken pox vaccine. I've had at least 5 conversations with the hospital staff, Sylvie's pediatrician Dr. Rosen and the compounding pharmacy over her new and improved sugar free raspberry goo but somehow the hospital pharmacy and new resident waited until after 6 pm to double check the dosage. Therefore, they'll have to torture Sylvie into taking the caramel version which she has decided to hate. One of the nurses, Katie, said the only things the little kids can control is what goes in their mouths. That makes perfect sense.
All of the residents are changing over so we have a new group of eager young doctors (I feel so old!) checking in on Sylvie and facing her wrath. They are all super nice. Sylvie's hemoglobin is still around 8 (should be over 11) but her magnesium is still stable and platelets are 135,000. Get used to hearing about platelets because that's the name of the game. Two days ago, they were only 45,000 which the nurse, Jessica, is still pretty good for Floor 5E officially called Pediatric Oncology and Hematology.
There's a little boy who just turned two who zooms around the floor all day long. He's as bald as Elmer Fudd and full of energy. I can't wait for Sylvie to be as energetic although the Sylvie looking like Elmer Fudd part is hard to digest. Michael got really sad about that today.
Not much to report except that Michael's mom, Ann, is staying at the hospital tonight so we can have a night at home. Was going to have a Scrabble rematch with Kitzchy but I need to go to bed soon.
After being at the hospital for about 2 days straight, I went to yoga this morning, dedicated my practice to Sylvie getting well, cruised home to see my furry friends and then back to Hackensack. Within 5 minutes of arriving at the hospital, I fell asleep on my couch bed for an hour and half. Note to self: Must eat at regular intervals.
I'm playing Fountains of Wayne "Hackensack" right now just because a). I like the band and b). There aren't too many songs called or about Hackensack. Not my favorite FOW song but nice melody. I love the sweet "Valley Winter Song" because it reminds me of Vermont and we won't be back for a long time I imagine.
The good news about Saturdays is no visits from infectious disease doctors. No more reminders about bacteria, fevers and infections. They're pretty nice despite the altercation over Sylvie not having received a chicken pox vaccine. I've had at least 5 conversations with the hospital staff, Sylvie's pediatrician Dr. Rosen and the compounding pharmacy over her new and improved sugar free raspberry goo but somehow the hospital pharmacy and new resident waited until after 6 pm to double check the dosage. Therefore, they'll have to torture Sylvie into taking the caramel version which she has decided to hate. One of the nurses, Katie, said the only things the little kids can control is what goes in their mouths. That makes perfect sense.
All of the residents are changing over so we have a new group of eager young doctors (I feel so old!) checking in on Sylvie and facing her wrath. They are all super nice. Sylvie's hemoglobin is still around 8 (should be over 11) but her magnesium is still stable and platelets are 135,000. Get used to hearing about platelets because that's the name of the game. Two days ago, they were only 45,000 which the nurse, Jessica, is still pretty good for Floor 5E officially called Pediatric Oncology and Hematology.
There's a little boy who just turned two who zooms around the floor all day long. He's as bald as Elmer Fudd and full of energy. I can't wait for Sylvie to be as energetic although the Sylvie looking like Elmer Fudd part is hard to digest. Michael got really sad about that today.
Not much to report except that Michael's mom, Ann, is staying at the hospital tonight so we can have a night at home. Was going to have a Scrabble rematch with Kitzchy but I need to go to bed soon.
Friday, February 27, 2009
There's No Place Like Home
The news I was waiting for all day long: Sylvie's ultrasound didn't show anything [more] abnormal than we already know. Whew. Pancreas, Gall Bladder, Kidneys all good. Arteries all good. We're going to another ultrasound of Sylvie's heart on Monday but it's not a big deal. When her hemoglobin is low, it creates a murmur and since she has this funky strep infection (officially called 'granulocatella'), one can never be too cautious. While Sylvie was screaming GET OUT to the infectious disease doctor he was able to shine a flashlight in her mouth and see the cause of her non-eating and pain-- mouth sores. Typical with chemo. Dr. Rosen had me get something called Traumeel but I can't even get Sylvie to drink water let alone drink 5 drops of this stuff. Will try again tomorrow.
So for now Sylvie has the mystery fever, wierd infection, low platelets, no white blood cells and of course, cancer.
I asked her Team the million dollar question: when can we go home and they said, "YOU can go home anytime" and laughed. So basically until Sylvie runs a normal temperature for several days in a row, no going home. She can't even leave the hospital room I'll be bringing my blanket back tomorrow.
Sylvie's platelets were at around 45,000 today. In order to start round two of chemotherapy next week, they need to be between 75,000 and 100,000 on their own (i.e. without a transfusion). And her white count needs to be a little existent too.
I started practicing yoga in the family locker room/laundry room because except for me and the mom, Donna, two doors down, no one even knows it's there. I'm sure at some point I'll scare the heck out of someone and vice versa.
Sylvie, my parents and I tried to play some princess fishing game meant for kids 3 and up. None of us were able to fish out even one 'crystal' although Sylvie thought it was pretty neat. Then she moved onto the Princess dominos ("bominos" according to Sylvie). If you had to guess what we're doing now, you're probably right (Disney 'Princess Stories').
So for now Sylvie has the mystery fever, wierd infection, low platelets, no white blood cells and of course, cancer.
I asked her Team the million dollar question: when can we go home and they said, "YOU can go home anytime" and laughed. So basically until Sylvie runs a normal temperature for several days in a row, no going home. She can't even leave the hospital room I'll be bringing my blanket back tomorrow.
Sylvie's platelets were at around 45,000 today. In order to start round two of chemotherapy next week, they need to be between 75,000 and 100,000 on their own (i.e. without a transfusion). And her white count needs to be a little existent too.
I started practicing yoga in the family locker room/laundry room because except for me and the mom, Donna, two doors down, no one even knows it's there. I'm sure at some point I'll scare the heck out of someone and vice versa.
Sylvie, my parents and I tried to play some princess fishing game meant for kids 3 and up. None of us were able to fish out even one 'crystal' although Sylvie thought it was pretty neat. Then she moved onto the Princess dominos ("bominos" according to Sylvie). If you had to guess what we're doing now, you're probably right (Disney 'Princess Stories').
24 Hour Party People
24 Hour Party People. That's what Sylvie and I are.
Surprise visit from Kitzchy last night since Michael is home sick. She brought travel Scrabble and we got down to business on the floor by the door while Sylvie slept. The first word I laid out was conveniently LIVER. Kitzchy killed me in the end and I should never have let her use the word RICE twice! What I should have done is probably gone to sleep a little earlier.
Sylvie's is finally sleeping after an all-nighter and busy morning. Sylvie's lower port began bleeding last night after a power struggle over taking her last does of 'carmelized' magnesium. Alba, the resident, finally said to skip the magnesium but as we went to go back to bed, Nicole the nurse noticed blood on the front of Sylvie's green hosptital nightie. Instantly the room became as sterile as it possibly could, we all donned masks (including a VERY pissed off Sylvie) and we all went to work. As a rule, I try to not appear scared or upset in front of Sylvie. It took every ounce of strength for me to not throw up and I kept having to look away. As a consolation prize, Nicole gave Sylvie a brand new Disney "Belle" doll of which they must have closets full of them and I let her watch The Little Mermaid/ Ariel's Daughter. Then, after they cleaned the ports and applied new bandages, Alba ordered up some platelets. And with platelets comes Tynelol and Benedryl half an hour to an hour in front. And the usual vital sign checks, antibiotics and so forth. Fortunately Sylvie was not getting food through her nose (it's called an NG tube so I'm going to start using the official word) which saved me an ADDITIONAL 18 "alarms" from going off between 7pm and 7 am. I was very distracted and couldn't fall back asleep.
Sylvie woke up around 6 am demanding the usual-- Dora or a princess movie. Karen who is the day nurse today suggested Sylvie wear a t-shirt to protect the port so Sylvie is wearing her brand new green St.Patrick's Day from her friend's bday party that she missed 2 weeks ago beneath her green hospital nightie. As further protection, Sylvie is also donning a princess dress (surprise, surprise) in the hopes that it will be more difficult for doctors and nurses to poke and prod her abdomen.
The ultrasound was scheduled for 8 am which quickly became 9 am and then 10am. By that point Sylvie was asking for food (yeay) but couldn't have any (boo). Sylvie and I both lay on the stretcher together as we got wheeled down to radiology. We tried to read a princess story and look at photos of Sylvie with Kate at her house and Sammy (and the Easter Bear from last year) while Padma the technician lubed up Sylvie's belly. My dad was with us too and Sylvie seemed to like knowing he was there too. Not to be graphic but I think my ass fell asleep while on the stretcher. I have to tell Sibel that because she just learned in English class what it means to have a limb "fall asleep." I do not know the Turkish translation.
We got back to the hospital room unscathed and I was happy to see they spruced up the room and changed the sheets. Sylvie's officially shedding all over the place. I keep staring at her so I can remember what she looks like with her full head of hair. Sylvie was born with more hair than many three year olds so we have never ever seen her without hair. Ironic, huh?
I missed Sara B. who dropped by with her world-famous Hamentashen cookies in advance of Purim which is March 10th (also my friend Ann's birthday). There must be half a stick of butter in each. They're awesome. Hopefully we will NOT be here through March 10.
Dr. Diamond, Marianne Mariniello (Advance Practice Nurse, Nurse Pracitioner) and Lynda the head nutritionist came by and Sylvie faked sleeping. Her bilirubin level dropped from yesterday which is great news, albumin dropped a little which isn't great but can be helped; otherwise they said Sylvie looked much better today than yesterday. When they get the radiology report, they'll return again.
Sylvie ate 2 cheesy duck crackers and a spoonful of cottage cheese. Breakfast of champions. She's now fast asleep.
Michael can't come to the hospital because he's pretty sick. I'm getting used to the no sleep; Somehow have managed to this without drinking any caffeine.
When his mom Ann sleeps over on Saturday evening, I might literally crawl under the covers at 8 pm despite having a lot of "24" and "Criminal Minds" to catch up on. I read that Michael Vick might get out of prison any day now because there's no room for him at a halfway house. There are so many jokes I could say but the new peaceful self instead will make an online donation to the Best Friends Animal Sanctuary (www.bestfriends.org) in Kanab, Utah (population 4,200 and home of my friend Kelly) where his dogs will spend their rest of their lives being pampered and taken care of.
OK time to order some "Room Service" for Sylvie in the hopes that she'll be hungry when she wakes up.
Surprise visit from Kitzchy last night since Michael is home sick. She brought travel Scrabble and we got down to business on the floor by the door while Sylvie slept. The first word I laid out was conveniently LIVER. Kitzchy killed me in the end and I should never have let her use the word RICE twice! What I should have done is probably gone to sleep a little earlier.
Sylvie's is finally sleeping after an all-nighter and busy morning. Sylvie's lower port began bleeding last night after a power struggle over taking her last does of 'carmelized' magnesium. Alba, the resident, finally said to skip the magnesium but as we went to go back to bed, Nicole the nurse noticed blood on the front of Sylvie's green hosptital nightie. Instantly the room became as sterile as it possibly could, we all donned masks (including a VERY pissed off Sylvie) and we all went to work. As a rule, I try to not appear scared or upset in front of Sylvie. It took every ounce of strength for me to not throw up and I kept having to look away. As a consolation prize, Nicole gave Sylvie a brand new Disney "Belle" doll of which they must have closets full of them and I let her watch The Little Mermaid/ Ariel's Daughter. Then, after they cleaned the ports and applied new bandages, Alba ordered up some platelets. And with platelets comes Tynelol and Benedryl half an hour to an hour in front. And the usual vital sign checks, antibiotics and so forth. Fortunately Sylvie was not getting food through her nose (it's called an NG tube so I'm going to start using the official word) which saved me an ADDITIONAL 18 "alarms" from going off between 7pm and 7 am. I was very distracted and couldn't fall back asleep.
Sylvie woke up around 6 am demanding the usual-- Dora or a princess movie. Karen who is the day nurse today suggested Sylvie wear a t-shirt to protect the port so Sylvie is wearing her brand new green St.Patrick's Day from her friend's bday party that she missed 2 weeks ago beneath her green hospital nightie. As further protection, Sylvie is also donning a princess dress (surprise, surprise) in the hopes that it will be more difficult for doctors and nurses to poke and prod her abdomen.
The ultrasound was scheduled for 8 am which quickly became 9 am and then 10am. By that point Sylvie was asking for food (yeay) but couldn't have any (boo). Sylvie and I both lay on the stretcher together as we got wheeled down to radiology. We tried to read a princess story and look at photos of Sylvie with Kate at her house and Sammy (and the Easter Bear from last year) while Padma the technician lubed up Sylvie's belly. My dad was with us too and Sylvie seemed to like knowing he was there too. Not to be graphic but I think my ass fell asleep while on the stretcher. I have to tell Sibel that because she just learned in English class what it means to have a limb "fall asleep." I do not know the Turkish translation.
We got back to the hospital room unscathed and I was happy to see they spruced up the room and changed the sheets. Sylvie's officially shedding all over the place. I keep staring at her so I can remember what she looks like with her full head of hair. Sylvie was born with more hair than many three year olds so we have never ever seen her without hair. Ironic, huh?
I missed Sara B. who dropped by with her world-famous Hamentashen cookies in advance of Purim which is March 10th (also my friend Ann's birthday). There must be half a stick of butter in each. They're awesome. Hopefully we will NOT be here through March 10.
Dr. Diamond, Marianne Mariniello (Advance Practice Nurse, Nurse Pracitioner) and Lynda the head nutritionist came by and Sylvie faked sleeping. Her bilirubin level dropped from yesterday which is great news, albumin dropped a little which isn't great but can be helped; otherwise they said Sylvie looked much better today than yesterday. When they get the radiology report, they'll return again.
Sylvie ate 2 cheesy duck crackers and a spoonful of cottage cheese. Breakfast of champions. She's now fast asleep.
Michael can't come to the hospital because he's pretty sick. I'm getting used to the no sleep; Somehow have managed to this without drinking any caffeine.
When his mom Ann sleeps over on Saturday evening, I might literally crawl under the covers at 8 pm despite having a lot of "24" and "Criminal Minds" to catch up on. I read that Michael Vick might get out of prison any day now because there's no room for him at a halfway house. There are so many jokes I could say but the new peaceful self instead will make an online donation to the Best Friends Animal Sanctuary (www.bestfriends.org) in Kanab, Utah (population 4,200 and home of my friend Kelly) where his dogs will spend their rest of their lives being pampered and taken care of.
OK time to order some "Room Service" for Sylvie in the hopes that she'll be hungry when she wakes up.
Thursday, February 26, 2009
Gasplosion
"Life is difficult" is how "The Road Less Traveled" by M. Scott Peck begins. And so it goes.
It is hard to be bummed with my little cheerleader telling me "I feel good" and "I don't have a fever" but the reality is, Sylvie doesn't feel well because I can look at her monitors and know she's uncomfortable or in pain and yes, she still has a fever. But not impossible either, I thought, as I cradled Sylvie on my chest for the last 20 minutes or so.
This was the second night or morning (it all blends together) this week where I woke up, looked at the hands of the clock and couldn't figure out the big and little hands. Think about it. Then there was a 3:30 am something-- I can't even remember. Antibiotics? Sleep apnea? Changing all Sylvie's IV lines? I have no idea.
Our niece Jackie cut school today to donate platelets for Sylvie but for some reason or another they couldn't do it. So Jackie hung out with us until noon and drew some princess pictures with Sylvie. I ran home around 1 pm to a). run b). see Lucky & OJ c). take a real shower and d). get some clean clothes. Michael's mom, Ann, had been bringing me stuff over the past two weeks and while I appreciate that she matches ALL of my clothing MUCH better than I do, I felt like dressing myself today :-).
Sylvie spent the entire day in bed watching Dora and Sleeping Beauty because she's hooked up to monitors, quarantined in the room until her fever subsides, and just plain exhausted. We had visits from the infectious disease doctor (no news) and then rounds with the rest of the medical team. This is comprised of the pediatrician (Dr. Diamond this week), nurse practitioner for Dr. Harris (Marianne), head nutritionist (Lynda), the residents, someone from physical therapy and usually a social worker. Sylvie hears all the footsteps as they creep into the room and either pretends to be sleeping like today, or begins hurling insults at them. We all knew she was wiped out because she didn't tell Dr. Diamond to get away nor did she hit him. Sylvie's bilirubin was a little off the charts which can be any number of things some more serious than others. In addition, her tummy grew 2 inches overnight! We scheduled an ultrasound for 8 am tomorrow morning. It goes without saying that Sylvie did not eat a morsel even after I assembled a smorgasbord of her breakfast favorites. No I did not eat it myself :-).
I'll spare being very graphic and disgusting but later this afternoon, Sylvie had a couple of gasplosions and wouldn't you know it, her stomach shrinked back those 2 inches. She was laying on my chest and I was too scared to move. Paralyzed, I waited for Sibel to return to the room so we could do a tag team diaper change. Ick.
Humor aside-- tonight I'm using it to make myself feel better-- I am beyond concerned about the tomorrow's ultrasound.
It's continues to be mind-boggling to me to watch Sylvie lay in bed in exhaustion & pain and think how the hell this happened in the first place. I told Sylvie today that this is hopefully the most challenging and difficult thing we're ever going to endure together and that I'm counting on her to be braver and stronger than me and to persevere. Later we can figure out what the lesson learned is. Then she farted.
It is hard to be bummed with my little cheerleader telling me "I feel good" and "I don't have a fever" but the reality is, Sylvie doesn't feel well because I can look at her monitors and know she's uncomfortable or in pain and yes, she still has a fever. But not impossible either, I thought, as I cradled Sylvie on my chest for the last 20 minutes or so.
This was the second night or morning (it all blends together) this week where I woke up, looked at the hands of the clock and couldn't figure out the big and little hands. Think about it. Then there was a 3:30 am something-- I can't even remember. Antibiotics? Sleep apnea? Changing all Sylvie's IV lines? I have no idea.
Our niece Jackie cut school today to donate platelets for Sylvie but for some reason or another they couldn't do it. So Jackie hung out with us until noon and drew some princess pictures with Sylvie. I ran home around 1 pm to a). run b). see Lucky & OJ c). take a real shower and d). get some clean clothes. Michael's mom, Ann, had been bringing me stuff over the past two weeks and while I appreciate that she matches ALL of my clothing MUCH better than I do, I felt like dressing myself today :-).
Sylvie spent the entire day in bed watching Dora and Sleeping Beauty because she's hooked up to monitors, quarantined in the room until her fever subsides, and just plain exhausted. We had visits from the infectious disease doctor (no news) and then rounds with the rest of the medical team. This is comprised of the pediatrician (Dr. Diamond this week), nurse practitioner for Dr. Harris (Marianne), head nutritionist (Lynda), the residents, someone from physical therapy and usually a social worker. Sylvie hears all the footsteps as they creep into the room and either pretends to be sleeping like today, or begins hurling insults at them. We all knew she was wiped out because she didn't tell Dr. Diamond to get away nor did she hit him. Sylvie's bilirubin was a little off the charts which can be any number of things some more serious than others. In addition, her tummy grew 2 inches overnight! We scheduled an ultrasound for 8 am tomorrow morning. It goes without saying that Sylvie did not eat a morsel even after I assembled a smorgasbord of her breakfast favorites. No I did not eat it myself :-).
I'll spare being very graphic and disgusting but later this afternoon, Sylvie had a couple of gasplosions and wouldn't you know it, her stomach shrinked back those 2 inches. She was laying on my chest and I was too scared to move. Paralyzed, I waited for Sibel to return to the room so we could do a tag team diaper change. Ick.
Humor aside-- tonight I'm using it to make myself feel better-- I am beyond concerned about the tomorrow's ultrasound.
It's continues to be mind-boggling to me to watch Sylvie lay in bed in exhaustion & pain and think how the hell this happened in the first place. I told Sylvie today that this is hopefully the most challenging and difficult thing we're ever going to endure together and that I'm counting on her to be braver and stronger than me and to persevere. Later we can figure out what the lesson learned is. Then she farted.
Wednesday, February 25, 2009
You Give Me Fever
Uggh... two steps forward one step back. Or the other way around.
Ricky and Brie came from Sharky's (I think I said Cozy's yesterday but that's the place in the City) and gave Sylvie a little bob haircut. Now she really looks like Suri Cruise. Gabrielle said that Alexandra spied a photo of Suri in a magazine last week and thought it was Sylvie.
I slept at home last night while Michael "slept" at the hospital with Sylvie. She had a fever ranging from 101 to 103 all night and through the morning. Sometime when it was still dark they did a chest x-ray. While I appreciate that the portable x-ray machine is painted like a giraffe, I hardly think it makes a difference to Sylvie. X-Ray totally clear.
After reading the interview with Leonard Cohen in the New York Times this morning, I was thinking of how much I love his song "Hallelujah" and then had a little hallelujah myself when Sylvie asked me for a bagel!!! This is a big victory. Dr. Nita even heard it :-). But when she took a bit of bagel w/ cream cheese, then oatmeal, then Kashi O's, then Greek Gods honey yogurt, each time she made a horrific face and spit it out. She might have mouth sores or just a bad taste in her mouth. We're trying to remedy it. At least she said she was hungry!
The infectious disease doctor came in this morning and said that the port which they closed up last Sunday has now tested positive for a strep bacteria. So the good news is the staph us under control. Now they need to determine what type of strep this is and administer the best antibiotic. For now, they're switching from Oxycillin and another one I can't remember to Vancomycin until they determine if it's resistant to penicillin. BUT she is going to see if they can work it out so that we can go home on schedule although I may need to get a crash course in administering antibiotics through a port. This is a far cry from when I volunteered with the paramedics at Wayne General during high school.
A little victory in that Sylvie's magnesium level is 2.2! It was about .9 two days ago. This is GREAT news. Yeay for Magnesium and Santa Cruz organic caramel dessert syrup!!!! Actually Dr. Rosen talked to the chief compounding pharmacist at Town & Country and they can make something 'better' for her.
Today Sylvie has more Physical Therapy and is getting some more blood because her hemoglobin is low. On that note, I wanted to thank everyone who has donated A+ blood or any kind of platelets for Sylvie. Paula has been keeping track of it and I have a little notebook at the Hackensack University Medical Center blood bank for everyone to sign in. Sylvie has been getting around 2 transfusions a week and has received platelets once. Because she's only around 26 pounds, she does not get a full pint each time. In case anyone needs the 411 its:
Hackensack University Medical Center Blood Bank
30 Prospect Avenue
Hackensack, NJ
Contact: Nadia
201-996-4818
Kitzchy came over around 6:45 am this morning when I was returning from my morning walk with Lucky. She drove over and I thought that for someone who ran 5 miles 2 weeks after giving birth that driving less then the length of a football field seemed a little silly (she was en route to the Duck Pond to go for a long run). Sammy made a movie for Sylvie; my eyes just welled up with tears. The Karas's and the Chase's are working on a Sylvie-run over Memorial Day which means everyone needs to start training now :-). I'm hoping Sylvie will be at the finish line.
As you can imagine, the Dining section of The New York Times is a highlight for Michael & me. He usually reads it online before it's published. I was looking at the giant photograph of the food pioneers in Brooklyn and thought it wasn't so far off from the old photographs that Polina & Dina have shown me of their family in Russia. First trucker hats and now beards... Go Brooklyn! I was going to insert a reference to Taliban beards but thought it might be taken the wrong way, especially by our Brookyn friends, who we love so much. Anyway, the article is actually wonderful and inspirational so everyone should read it. It makes our attempts at having a community garden plot in Ridgewood seem silly. On that note, however, I continued reading about Mast Brothers Chocolate since we're chocolate afficionados and couldn't help but look at the interior photo of the furry faced bros leaning over their precious cacao beans thinking that it has to be a health code violation and they need hair nets for their faces (great business idea). Obviously my sense of humor is drastically altered 15 days after being at the hospital.
Just want to put it out there-- we love our friends or family and want to see you but if you are sick, your loved ones are sick, the best thing to do and only option is send your love from afar and keep the sniffles or upset tummies at home. Sylvie's chemo makes her NEUTROPONIC (word of the day, there will be a test later) which in essence means low white blood cell count and no resistance to bacteria or viruses.
Ricky and Brie came from Sharky's (I think I said Cozy's yesterday but that's the place in the City) and gave Sylvie a little bob haircut. Now she really looks like Suri Cruise. Gabrielle said that Alexandra spied a photo of Suri in a magazine last week and thought it was Sylvie.
I slept at home last night while Michael "slept" at the hospital with Sylvie. She had a fever ranging from 101 to 103 all night and through the morning. Sometime when it was still dark they did a chest x-ray. While I appreciate that the portable x-ray machine is painted like a giraffe, I hardly think it makes a difference to Sylvie. X-Ray totally clear.
After reading the interview with Leonard Cohen in the New York Times this morning, I was thinking of how much I love his song "Hallelujah" and then had a little hallelujah myself when Sylvie asked me for a bagel!!! This is a big victory. Dr. Nita even heard it :-). But when she took a bit of bagel w/ cream cheese, then oatmeal, then Kashi O's, then Greek Gods honey yogurt, each time she made a horrific face and spit it out. She might have mouth sores or just a bad taste in her mouth. We're trying to remedy it. At least she said she was hungry!
The infectious disease doctor came in this morning and said that the port which they closed up last Sunday has now tested positive for a strep bacteria. So the good news is the staph us under control. Now they need to determine what type of strep this is and administer the best antibiotic. For now, they're switching from Oxycillin and another one I can't remember to Vancomycin until they determine if it's resistant to penicillin. BUT she is going to see if they can work it out so that we can go home on schedule although I may need to get a crash course in administering antibiotics through a port. This is a far cry from when I volunteered with the paramedics at Wayne General during high school.
A little victory in that Sylvie's magnesium level is 2.2! It was about .9 two days ago. This is GREAT news. Yeay for Magnesium and Santa Cruz organic caramel dessert syrup!!!! Actually Dr. Rosen talked to the chief compounding pharmacist at Town & Country and they can make something 'better' for her.
Today Sylvie has more Physical Therapy and is getting some more blood because her hemoglobin is low. On that note, I wanted to thank everyone who has donated A+ blood or any kind of platelets for Sylvie. Paula has been keeping track of it and I have a little notebook at the Hackensack University Medical Center blood bank for everyone to sign in. Sylvie has been getting around 2 transfusions a week and has received platelets once. Because she's only around 26 pounds, she does not get a full pint each time. In case anyone needs the 411 its:
Hackensack University Medical Center Blood Bank
30 Prospect Avenue
Hackensack, NJ
Contact: Nadia
201-996-4818
Kitzchy came over around 6:45 am this morning when I was returning from my morning walk with Lucky. She drove over and I thought that for someone who ran 5 miles 2 weeks after giving birth that driving less then the length of a football field seemed a little silly (she was en route to the Duck Pond to go for a long run). Sammy made a movie for Sylvie; my eyes just welled up with tears. The Karas's and the Chase's are working on a Sylvie-run over Memorial Day which means everyone needs to start training now :-). I'm hoping Sylvie will be at the finish line.
As you can imagine, the Dining section of The New York Times is a highlight for Michael & me. He usually reads it online before it's published. I was looking at the giant photograph of the food pioneers in Brooklyn and thought it wasn't so far off from the old photographs that Polina & Dina have shown me of their family in Russia. First trucker hats and now beards... Go Brooklyn! I was going to insert a reference to Taliban beards but thought it might be taken the wrong way, especially by our Brookyn friends, who we love so much. Anyway, the article is actually wonderful and inspirational so everyone should read it. It makes our attempts at having a community garden plot in Ridgewood seem silly. On that note, however, I continued reading about Mast Brothers Chocolate since we're chocolate afficionados and couldn't help but look at the interior photo of the furry faced bros leaning over their precious cacao beans thinking that it has to be a health code violation and they need hair nets for their faces (great business idea). Obviously my sense of humor is drastically altered 15 days after being at the hospital.
Just want to put it out there-- we love our friends or family and want to see you but if you are sick, your loved ones are sick, the best thing to do and only option is send your love from afar and keep the sniffles or upset tummies at home. Sylvie's chemo makes her NEUTROPONIC (word of the day, there will be a test later) which in essence means low white blood cell count and no resistance to bacteria or viruses.
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