Wednesday, March 16, 2011
UPDATE on ER
The doctor came in and said her counts were really low. She did speak to our oncologist and she said that we are reliable enough to send home with antibiotics for now. They said if she gets worse than to definitely come back in, but we need to call the doctor to talk to her tomorrow. They also said that if the cultures come back positive for an infection at least she'll already be getting the antibiotics. (She has an appointment on Friday, so she's getting seen again) They would be doing the same thing here in the hospital as we would be doing at home and theres less risk of her getting sick at home. So thats good news and hopefully the culture comes back negative.
Trip to the ER
Isabelle was still lethargic today. We traveled around trying to find a recliner for Isabelle that would be comfortable for her since she has just wanted to lay around on the couch all day. When we got home my dad said that she had been very lethargic and just wanted him to hold her. We called the doctor and she said that we should take her to the ER because the steroids that she is on could be hiding an infection. I'm pretty annoyed because when we were at the clinic yesterday I mentioned how lethargic she was and they brushed it off and didn't do any kind of culture.
They said normally the wouldn't have to wait for a blood culture because they could just check her white blood cells and see if they are going up. In her case its different because the chemo is killing her cells, they are supposed to go up and rebuild. So there is no way to tell without the culture. Right now we are in the ER in a room, surrounded by sick people. They said if her blood count is high enough we don't have to stay, but we're already positive its really low because they just checked her blood yesterday and it was really low. Once they confirm that it is very low then they will move us into a room, until then we are sitting in chairs by a bed in triage.
Now its another $125 visit and they're telling us that we need to stay for at least 48 hours until the blood culture comes backs to see if there are any signs of infection. They gave her antibiotics as a precautionary. (Thats $125/day capped off at $750 per stay.) This is going to be our 2nd hospitalization in the past month. (the first one we already capped off) Who knows, maybe they will speak to our Oncologist on the phone and we can go home, but I doubt it. (The doctor in the ER doesn't specialize in oncology, but will contact the oncologist on call) Hopefully she doesn't have an infection and this is all precautionary.
The oncologist is our blood cancer doctor.
They said normally the wouldn't have to wait for a blood culture because they could just check her white blood cells and see if they are going up. In her case its different because the chemo is killing her cells, they are supposed to go up and rebuild. So there is no way to tell without the culture. Right now we are in the ER in a room, surrounded by sick people. They said if her blood count is high enough we don't have to stay, but we're already positive its really low because they just checked her blood yesterday and it was really low. Once they confirm that it is very low then they will move us into a room, until then we are sitting in chairs by a bed in triage.
Now its another $125 visit and they're telling us that we need to stay for at least 48 hours until the blood culture comes backs to see if there are any signs of infection. They gave her antibiotics as a precautionary. (Thats $125/day capped off at $750 per stay.) This is going to be our 2nd hospitalization in the past month. (the first one we already capped off) Who knows, maybe they will speak to our Oncologist on the phone and we can go home, but I doubt it. (The doctor in the ER doesn't specialize in oncology, but will contact the oncologist on call) Hopefully she doesn't have an infection and this is all precautionary.
The oncologist is our blood cancer doctor.
Tuesday, March 15, 2011
First day at the clinic
Today hasn't been the best day. We were a half an hour late to the clinic appointment thanks to traffic going towards DC. Isabelle was lethargic and cranky ALL day. The first thing they did was do a finger stick to check her blood counts. She didn't need a blood tranfusion, but she did need another platelet transfusion today. Her white blood cells have gone up to 170 opposed to her 63.7 on the 11th which is great. With that being said, her chemo on Friday will knock the counts for everything back down. She is still considered neutropenic because it is under 500.
By the time they came in for the platelet transfusion, the numbing cream had worn off and they didn't realize that her port had not been accessed. So we had to put more on and wait. Isabelle did very well when they accessed her port. I held her arms and covered her eyes and she only cried a little bit. (she was scared, it didn't hurt) I don't think I'm going to let her see them do it because it is very upsetting. It looked like they took a sewing needle and just stuck it right into her check. (It was one of those butterfly things which they connected to tubing) From there they transfused her. They had an art therapist there for the kids, some toys, and fish, but all she wanted to do was sleep. She took probably a 5 hour nap today and just layed around. I was glad when we finally got to leave and come home.
The doctor had good news for us. The cancer hasn't spread to her brain or spine. She still has a long way to go since its going to take at least 2.5 years to treat her. Hopefully tomorrow she will have a good day and want to play around a little bit. She goes back Friday for more chemo. It took us 1.5 hours to get there this morning because of the traffic. The drive is grueling. Everything is stressful and we are all exhausted.
By the time they came in for the platelet transfusion, the numbing cream had worn off and they didn't realize that her port had not been accessed. So we had to put more on and wait. Isabelle did very well when they accessed her port. I held her arms and covered her eyes and she only cried a little bit. (she was scared, it didn't hurt) I don't think I'm going to let her see them do it because it is very upsetting. It looked like they took a sewing needle and just stuck it right into her check. (It was one of those butterfly things which they connected to tubing) From there they transfused her. They had an art therapist there for the kids, some toys, and fish, but all she wanted to do was sleep. She took probably a 5 hour nap today and just layed around. I was glad when we finally got to leave and come home.
The doctor had good news for us. The cancer hasn't spread to her brain or spine. She still has a long way to go since its going to take at least 2.5 years to treat her. Hopefully tomorrow she will have a good day and want to play around a little bit. She goes back Friday for more chemo. It took us 1.5 hours to get there this morning because of the traffic. The drive is grueling. Everything is stressful and we are all exhausted.
Monday, March 14, 2011
4th day home
She was feeling pretty good today and had quite a few spirts of energy today. The steroid side effects are kicking in and she ate a lot today. Tomorrow morning we have a long day at the clinic. I'm very nervous about how tomorrow will go. They said expect to stay there all day. My dad is going to watch Sabrina for us while we go bright and early.
We had to take Sabrina to the doctor today because she pulled her elbow out. The doctor put it back in with no problem and shes using it just fine now. The doctor said that we will have to watch it because kids who pull their elbows out of sockets can easily do it again. If it happends again then they will have to put a cast on it, so it can heal. At least that is all that has happened.
I wanted to thank everyone who has helped us out and offered to help it def. means a lot. There doesn't seem to be enough time in the day, we are very grateful.
Insurance is already sending us stuff and we just left the hospital Friday. Going to apply for this financial assistance with NCCS when I get a chance. So many bills coming our way between hospitalization, surgery, all kinds of specialists (cardiologist, radiologist ect.), outpatient visits (we are going there at least twice a week), and "procedure" costs. Thank goodness we have blue cross and blue shields. I know just with the past 2 weeks its going to be around $2000 rough estimate. Thats great seeing how our hospitalization copay is capped at $750 per hospitalization.
Isabelle is allowed to play outside if the temperature is 60 or higher. (not at the park or anywhere there is people) If shes feeling well, Wed. and Thurs. are supposed to be nice days and we wanted to take her out for a stroll in her step 2 buggy. Friday shes not going to feel well after her "procedure" and chemo so I really want to take advantage if she is feeling good.
Last night I was able to give her an actual shower because the holes in her back are closed. Her back has little holes and bruises everywhere. She also has red marks, where the bandages have ripped off her skin. We tried loosing the bandages with alcohol wipes like the nurses said, but it still left marks.
We had to take Sabrina to the doctor today because she pulled her elbow out. The doctor put it back in with no problem and shes using it just fine now. The doctor said that we will have to watch it because kids who pull their elbows out of sockets can easily do it again. If it happends again then they will have to put a cast on it, so it can heal. At least that is all that has happened.
I wanted to thank everyone who has helped us out and offered to help it def. means a lot. There doesn't seem to be enough time in the day, we are very grateful.
Insurance is already sending us stuff and we just left the hospital Friday. Going to apply for this financial assistance with NCCS when I get a chance. So many bills coming our way between hospitalization, surgery, all kinds of specialists (cardiologist, radiologist ect.), outpatient visits (we are going there at least twice a week), and "procedure" costs. Thank goodness we have blue cross and blue shields. I know just with the past 2 weeks its going to be around $2000 rough estimate. Thats great seeing how our hospitalization copay is capped at $750 per hospitalization.
Isabelle is allowed to play outside if the temperature is 60 or higher. (not at the park or anywhere there is people) If shes feeling well, Wed. and Thurs. are supposed to be nice days and we wanted to take her out for a stroll in her step 2 buggy. Friday shes not going to feel well after her "procedure" and chemo so I really want to take advantage if she is feeling good.
Last night I was able to give her an actual shower because the holes in her back are closed. Her back has little holes and bruises everywhere. She also has red marks, where the bandages have ripped off her skin. We tried loosing the bandages with alcohol wipes like the nurses said, but it still left marks.
Saturday, March 12, 2011
First whole day home
Today was a little better as far as giving her medicine. It didn't feel so hectic, just a lot of pill crushing and mixing. I have a list of the meds shes supposed to get in the morning. As I draw it up, Abel gives it to her, and I cross it off the list. All day she was exhausted with almost no activity level other than going to the bathroom and eating. (At least shes eating) She took a mid-day nap around the same time as Sabrina and I was able to run to the store to pick up some thing. Around 5:30ish she picked up a little bit of energy and played with some stamps and walked around a little bit. It was nice to see my princess acting like herself. Most of the day shes been so fussy and seems miserable most of the day. I wish she felt better.
Michelle stopped by today which was nice to see someone in the outside world. As soon as she left we gave Isabelle her meds. When we were brushing her teeth and giving her mouth meds she threw up all over Abel and all over the bathroom. My dad and I gloved up as my mom took Sabrina upstairs. Abel jumped into the shower quickly to rinse off. (Not supposed to get chemo on our skin) My dad took her clothes off and wiped her body off. She was crying the whole time. I wanted to give her a bath, but her wound from the spinal tap isn't healed. It was still in her hair so after Abel got out of the shower he helped hold her over the tub so I could just get her hair. Her hair is really dry and is starting to "shed" a little more than normal. She was very upset that she threw up and asked me, "mommy what happened to me." Was a little sad, but I turned it into a funny thing that she threw up on daddy, which worked.
I can't wait until she feels better and her energy picks up. She just wants to lay down all day and have me lay with her. I'm just lucky that she is taking everything, so much better than a lot of other kids. Even though she is doing really good considering, it is so hard to see her falling apart.
Medicines we are giving her:
Michelle stopped by today which was nice to see someone in the outside world. As soon as she left we gave Isabelle her meds. When we were brushing her teeth and giving her mouth meds she threw up all over Abel and all over the bathroom. My dad and I gloved up as my mom took Sabrina upstairs. Abel jumped into the shower quickly to rinse off. (Not supposed to get chemo on our skin) My dad took her clothes off and wiped her body off. She was crying the whole time. I wanted to give her a bath, but her wound from the spinal tap isn't healed. It was still in her hair so after Abel got out of the shower he helped hold her over the tub so I could just get her hair. Her hair is really dry and is starting to "shed" a little more than normal. She was very upset that she threw up and asked me, "mommy what happened to me." Was a little sad, but I turned it into a funny thing that she threw up on daddy, which worked.
I can't wait until she feels better and her energy picks up. She just wants to lay down all day and have me lay with her. I'm just lucky that she is taking everything, so much better than a lot of other kids. Even though she is doing really good considering, it is so hard to see her falling apart.
Medicines we are giving her:
- Sulfa-5 ml 2X a day for pneumonia prevention (only on Saturday and Sundays)
- Zofran- 2.5 ml every 4-6 hrs. for nausia
- Tylenol #3 (with codine)- 5ml every 6 hours as needed
- Miralax- 8.5 grams as needed for constipation (caused by chemo)
- Pepcid- 1 ml 2X a day for a week while on Dex
- Dexamethasone aka Dex- 3.5 mg in the morning and 3 mg in the evening (steroid)
- Nystatin- 4 ml every 6 hours in mouth to prevent thrush/sores
- Lidocaine- numbing cream that I have to apply to her port an hour before we go to the clinic so they can poke it without it hurting her
Friday, March 11, 2011
Day 8
She went in today for her procedure and she did very well. It was a little upsetting because when she was sedated her eyes were still open and blinking. They ushered us out of the room and brought us back in after about 20 minutes. They pulled fluid from the spine, took some marrow, and injected the chemo. They warned us that when she started to "come to" that she may twitch and kick around, but its a dream type state. I nearly had a heart attack when the monitor said no breath recorded, but it said that because they took the breathing thing out of her nose. Her heart rate was very low before and after the procedure so they had to give her meds to pick it back up. She had to have an EKG and see a cardiologist to check her heart before we could go home. It all checked out ok.
It is so weird to be home right now. Shes getting about 7 medicines a day which is a bit overwhelming. I felt a lot of anxiety on the way home, but now that I'm home I'm feeling better. The best way to deal with this is head on because there is never going to be a right time to face this. The Christine's paid for my dogs to get groomed which we are very grateful for. They look amazing. (We wanted them cleaned up so they don't bring too much stuff from there feet and we were'nt going to have time to do it ourselves.) Isabelle's appointment on Tuesday is at 9 am and they said expect to stay there all day.
Isabelle fell asleep in the car on the way home, but when she woke up she was crying. She stopped crying when she saw our cat and said SPOOKY!! She got off the couch and ran to the cat and pet her for a while. She was so excited to see the dogs too. She was like I want to sleep with Max and Coconut. So cute!
It is so weird to be home right now. Shes getting about 7 medicines a day which is a bit overwhelming. I felt a lot of anxiety on the way home, but now that I'm home I'm feeling better. The best way to deal with this is head on because there is never going to be a right time to face this. The Christine's paid for my dogs to get groomed which we are very grateful for. They look amazing. (We wanted them cleaned up so they don't bring too much stuff from there feet and we were'nt going to have time to do it ourselves.) Isabelle's appointment on Tuesday is at 9 am and they said expect to stay there all day.
Isabelle fell asleep in the car on the way home, but when she woke up she was crying. She stopped crying when she saw our cat and said SPOOKY!! She got off the couch and ran to the cat and pet her for a while. She was so excited to see the dogs too. She was like I want to sleep with Max and Coconut. So cute!
Subscribe to:
Posts (Atom)