I am happy to report that Megan is starting to feel much better. :0) She is eating and drinking normally, though she has lost a total of 40 pounds now. I'm wondering if I'm going to have to buy new pants for her again...She had gained 20 pounds this fall (and now we know why) - and I had to buy her all new pants -- but cancer is not a fun way to lose the weight! She is also watching tv now, playing on the internet and able to read small amounts at a time, so no books yet. Her vision still isn't the greatest, but a bit better. She has started to walk slowly with the walker around the second floor of the house. She took a visit to the first floor down the steps and she said it was too hard getting back up to do it often. At least she tried! She did take a fall in the shower too, but just some minor bumps to be had. She didn't want to have me come in to get her the face soap...silly girl. :) Her head pain is getting better, just tolerable pain right now, which is awesome. She's still taking the Dilaudid for pain during the day, but none at night now. If only the medicine's side effects would go away, she'd be very happy. :)
We had a set-back on Thursday, which made me pretty upset. The oncologist called to say that the pediatric endocrinologist at Cardinal Glennon decided she didn't want to take Megan's case because it's just too rare and complex. He tried the adult dr's, but they wouldn't take her either, so unfortunately she can't get her cancer care at St. John's. He said he'd try to find her someone in the Washington University system.
Friday morning I got a call from a nurse who works for the two doctors who see thyroid cancer patients in the radiation department at Siteman Cancer Center at Barnes. She was very helpful, providing plenty of useful information about their Radioactive Iodine (RAI) treatment program. They do see everyone, ages 5 - 97. They handle the entire care, no separate endocrinologist is usually required. Their program does seem to be less restrictive than St. John's program. They do the entire treatment on an out-patient basis as opposed to staying in the hopital 2 days like St. John's was going to require. They only do one thyroid scan 5 days after the treatment, as opposed to one 2 days before and 1 week after at St. John's. St. John's also wanted her to be completely off any thyroid medicine for 6 weeks and Barnes wants her on medicine to a thyroid level of 30 before she goes off the medicine for 2 weeks prior to treatment. Of course, she isn't on the medicine they want her on. So, we go to see the new doctor on Tuesday morning. More info to follow...
So Friday afternoon I spent calling different departments getting medical records and scans on CD and took them to Siteman. The only part I'm sort of upset about, is that Siteman isn't in a "kid-friendly" area - it was kind of depressing when I was there. Nothing compared to going into the Cardinals Care Kids Cancer Center at St. John's. I'm sure Children's Cancer Center (an extention of Siteman) is awesome too, but they don't treat her cancer there. So boring adult cancer center it is. But, the only thing that matters is that they have incredible cancer care. Period.
Of course the bills have started coming in and they are fun to go through and see how much they bill for a service and how much insurance allows for each of them. And someone with out insurance would pay the whole amount?? unimaginable. The bad news on Wednesday night was that I realized they were denying the claims starting with the second surgery because of "pre-existing condition". Didn't seem right to me since we've been with United HealthCare for 3 years. I called and they said it did look wrong but I'd have to call back on Thursday. So I called and talked to the review department. Turns out our policies group number changed on Jan. 1 so it flagged us all for pre-existing conditions. They unflagged us and she started to put through the denied claims. Whew! I had huge anxiety knots in my stomach from that one...that's all I would need on top of deductibles and copays...sheesh.
Saturday, February 26, 2011
Tuesday, February 22, 2011
Feb. 22
Today begins a halfway normal life again.
Kelsey came home on Sunday night after spending Thursday and Friday at Tricia and Shannon's house and then the weekend with dad and spending the previous two weeks at Aunt Marie's house - she's able to be back home with us and sleeping in her own bed again. I think she's had fun hanging with Aunt Marie, cousin Beth, Miss Deanna, Carol, Grandma, Dad and the Conrads, but it was good to be home again. :) Thanks to everyone who has helped...been a crazy month for sure!
Megan layed in bed all morning but really felt pretty good. No major issues. She watched 30 minutes of TV while I went to get Kelsey's medicine. She actually wanted 2 small quesadillas for breakfast...hey as long as it's food, it works for me! Yesterday all she ate was 2 of those frozen qusadillas and a cookie.
We went to the cancer center today to get a check-up and get blood taken for tests. Megan is still taking these darn steroids to lower the swelling in her brain, which ultimately makes so many things feel better, but it also has a lot of side affects. We had a list of questions for the doctor. Of course he added 2 more medications to the 13 she already has... She has a rash on her neck and behind her ear into her head - from steroids he says. Her legs and hips and butt hurt - he says steroids can cause muscle and bone pain. Her stomach hurts terribly - still from the acid build up from the steroids. She's also having a hard time sleeping from them too. I gave her sleeping pills and benedryl before bed the last 2 nights and she still only slept 3 hours last night and the night before. No fun. She just lays there in the dark. I asked her what she thinks about all the time as she's been laying in bed in the dark and quiet for the last 3 weeks and she said mostly camp. Thinking about all the cool things she's done over the years, what units she's been in, and what she'll do this year. She's signed up for one week at Camp Rainbow, a free camp for kids with Cancer, 2 weeks at Girl Scout horsback riding camp at Cedarledge with Shelby and then 1 week at Girl Scout Let's Get Cooking camp at Tuckaho with Shelby. She wants to do a Wolf camp with Shelby too. Not able to camp with Katie again this year. :(
She's had tingling in her feet for most of her hospital stay. Now it's tingly in her left leg, hands and face. Oncologist isn't sure why...he wanted us to see the neurologist next week but now he wants us to call on Thursday and if it's not better wants us to get in to see him this week. Another wait and see....
We did get an appointment to see the endocrinologist on Friday. There really isn't any other pediatric dr. who deals with kids with thyroid cancer in St. Louis. She will do all the follow-up on tracking her thyroid levels, medications and such in the future. I guess I'm going to schedule the radioactive iodine treatment tomorrow. The oncologist doesn't want to wait - she needs to have it done on the 6-week post-surgery schedule, but we had to get in to see this new dr. That means she starts the low-iodine diet within the next week. I've been reading online about it - not much fun. All foods need to be 5 g of iodine or less per serving. (Salt is 400 g for 1 tsp). No dairy, eggs, commercial bread, anything from the sea, only 5 oz of fresh meat (no turkey) a day, 4 servings of very few carbohydrates, no iodized salt...so many weird restrictions. All pure and plain, nothing from restaurants. They do have a cookbook online so I guess I'll be baking bread, making homemade waffles and such. I think I'll be making a trip down to Valenti's meat market. :)
After the dr's visit she felt pretty decent. She watched a couple hours of tv tonight, looked on the computer and Keri brought her 3 new teen magazines (along with a fabulous dinner) and she was super excited. She actually ate the dinner that was brought to us tonight and wanted more mashed potatoes at 10 pm and then a cookie from last nights dinner and the pie from tonight too! I guess since she's lost 35 pounds I won't mind the little extra dessert intake! :0)
Kelsey came home on Sunday night after spending Thursday and Friday at Tricia and Shannon's house and then the weekend with dad and spending the previous two weeks at Aunt Marie's house - she's able to be back home with us and sleeping in her own bed again. I think she's had fun hanging with Aunt Marie, cousin Beth, Miss Deanna, Carol, Grandma, Dad and the Conrads, but it was good to be home again. :) Thanks to everyone who has helped...been a crazy month for sure!
Megan layed in bed all morning but really felt pretty good. No major issues. She watched 30 minutes of TV while I went to get Kelsey's medicine. She actually wanted 2 small quesadillas for breakfast...hey as long as it's food, it works for me! Yesterday all she ate was 2 of those frozen qusadillas and a cookie.
We went to the cancer center today to get a check-up and get blood taken for tests. Megan is still taking these darn steroids to lower the swelling in her brain, which ultimately makes so many things feel better, but it also has a lot of side affects. We had a list of questions for the doctor. Of course he added 2 more medications to the 13 she already has... She has a rash on her neck and behind her ear into her head - from steroids he says. Her legs and hips and butt hurt - he says steroids can cause muscle and bone pain. Her stomach hurts terribly - still from the acid build up from the steroids. She's also having a hard time sleeping from them too. I gave her sleeping pills and benedryl before bed the last 2 nights and she still only slept 3 hours last night and the night before. No fun. She just lays there in the dark. I asked her what she thinks about all the time as she's been laying in bed in the dark and quiet for the last 3 weeks and she said mostly camp. Thinking about all the cool things she's done over the years, what units she's been in, and what she'll do this year. She's signed up for one week at Camp Rainbow, a free camp for kids with Cancer, 2 weeks at Girl Scout horsback riding camp at Cedarledge with Shelby and then 1 week at Girl Scout Let's Get Cooking camp at Tuckaho with Shelby. She wants to do a Wolf camp with Shelby too. Not able to camp with Katie again this year. :(
She's had tingling in her feet for most of her hospital stay. Now it's tingly in her left leg, hands and face. Oncologist isn't sure why...he wanted us to see the neurologist next week but now he wants us to call on Thursday and if it's not better wants us to get in to see him this week. Another wait and see....
We did get an appointment to see the endocrinologist on Friday. There really isn't any other pediatric dr. who deals with kids with thyroid cancer in St. Louis. She will do all the follow-up on tracking her thyroid levels, medications and such in the future. I guess I'm going to schedule the radioactive iodine treatment tomorrow. The oncologist doesn't want to wait - she needs to have it done on the 6-week post-surgery schedule, but we had to get in to see this new dr. That means she starts the low-iodine diet within the next week. I've been reading online about it - not much fun. All foods need to be 5 g of iodine or less per serving. (Salt is 400 g for 1 tsp). No dairy, eggs, commercial bread, anything from the sea, only 5 oz of fresh meat (no turkey) a day, 4 servings of very few carbohydrates, no iodized salt...so many weird restrictions. All pure and plain, nothing from restaurants. They do have a cookbook online so I guess I'll be baking bread, making homemade waffles and such. I think I'll be making a trip down to Valenti's meat market. :)
After the dr's visit she felt pretty decent. She watched a couple hours of tv tonight, looked on the computer and Keri brought her 3 new teen magazines (along with a fabulous dinner) and she was super excited. She actually ate the dinner that was brought to us tonight and wanted more mashed potatoes at 10 pm and then a cookie from last nights dinner and the pie from tonight too! I guess since she's lost 35 pounds I won't mind the little extra dessert intake! :0)
Monday, February 21, 2011
Feb. 21
Saturday morning Megan woke up and felt like she was ready to head home and see her doggies, so we finally made it home on Saturday evening around 5:30. She did pretty good on the car ride home. She wore sunglasses and luckily it was a cloudy day and getting dark by the time we got home. She was so excited to see the dogs. Of course I wasn't, because they were a muddy mess from all the melting snow so I had to give them both a bath before I would let them loose in the house. And after 2 weeks of sleeping on that couch, my back wasn't much in the mood for leaning over the tub to give 2 dogs a bath, not to mention cleaning the kitchen floor that was a muddy mess. :)
Megan is starting to feel a bit better for parts of each day more and more. She can have a light on for part of the day and watch maybe 30 minutes of TV once or twice a day. She's enjoyed looking at her magazines getting caught up on all the teen stars gossip and looking at the prom dresses. :0)
So I've started our own pharmacy out of my bedroom. There are seriously tooo many drugs in one hosehold. She has 13 medications equaling taking 24 pills, 2 shots, 2 liquids, 2 puffs and 2 sprays each day. We got a fancy pill holder for 4 times a day and a dry erase board we hung on the bathroom door with a medicine schedule written on it. I freaked when I saw the bill for the shots - the insurance would only pay for 15 days at a time, so 2 copays of $35 each, but each presciption cost $1,630. Good golly!
A big thanks to our Girl Scout leader friends who have begun bringing us dinners. Plus lots of paper plates and cups are a huge help to cut down on dishes. Not very earth wise, but probably just easier for now. :)
We head to the oncologist tomorrow. She has a rash on her neck - and her face, hands and left leg are tingly - so we need to ask about those and the pharmacy never got her prevacid prescription right and her stomach is hurting very often, they say from lots of extra acid from meds. Tums are kind of working right now but need to get the prevacid I guess.
My room is all set up with all her gifts, flowers, stuffed animals and lots of cards. It's definitely kid friendly - and close to the bathroom. :) Pepper is happy to be sleeping with Megan again and I do believe it's very good therapy for Megan too. :0)-
Megan is starting to feel a bit better for parts of each day more and more. She can have a light on for part of the day and watch maybe 30 minutes of TV once or twice a day. She's enjoyed looking at her magazines getting caught up on all the teen stars gossip and looking at the prom dresses. :0)
So I've started our own pharmacy out of my bedroom. There are seriously tooo many drugs in one hosehold. She has 13 medications equaling taking 24 pills, 2 shots, 2 liquids, 2 puffs and 2 sprays each day. We got a fancy pill holder for 4 times a day and a dry erase board we hung on the bathroom door with a medicine schedule written on it. I freaked when I saw the bill for the shots - the insurance would only pay for 15 days at a time, so 2 copays of $35 each, but each presciption cost $1,630. Good golly!
A big thanks to our Girl Scout leader friends who have begun bringing us dinners. Plus lots of paper plates and cups are a huge help to cut down on dishes. Not very earth wise, but probably just easier for now. :)
We head to the oncologist tomorrow. She has a rash on her neck - and her face, hands and left leg are tingly - so we need to ask about those and the pharmacy never got her prevacid prescription right and her stomach is hurting very often, they say from lots of extra acid from meds. Tums are kind of working right now but need to get the prevacid I guess.
My room is all set up with all her gifts, flowers, stuffed animals and lots of cards. It's definitely kid friendly - and close to the bathroom. :) Pepper is happy to be sleeping with Megan again and I do believe it's very good therapy for Megan too. :0)-
Friday, February 18, 2011
Feb. 18
We slept in again this morning till 11 am. This dark and cold room does make it nice for sleeping. The physical therapist came in and tried to take her for a walk but she was in too much pain and nauscious so she waited until she got all of her medicines and came back after lunch. She helped her get up with a walker and took a short walk to some stairs. She showed her the best way to go up the stairs and down - and also told me what to do once we're home. By the time she got back to bed she was crying in pain again and very nauscious so the nurse gave her a second nausia medicine. She then slept the rest of the afternoon until 6:30. She even slept through the oncologists visit.
We decided to let Megan stay another night in the hospital, no reason to rush her out and she really didn't want to go home today while feeling so poorly. Her ears have really hurt her today too and says it's harder to hear. So the dr. said to have her get up and take a shower as soon as she is feeling better. She needs to be up as much as possible to get her body a little more back to normal. I have to make sure she has a good pair of sunglasses for the ride home because of the light. Keeping things dark really does help her.
Megan chatted with Kelsey, Dad and aunt Marie this evening for a bit and then took another small nap. She seemed to be feeling better so she asked to take a shower. The nurse offered her to go to the tub room and take a nice bath. She was super excited! There's even a TV in there and she thought she might turn it on. That would make the first time she turned on the TV in these 12 days in the hospital. :0) She says when she's done she's ready to take all of her medicines and give her some Benedryl to knock her out.
I guess we'll see what tomorrow brings...
We decided to let Megan stay another night in the hospital, no reason to rush her out and she really didn't want to go home today while feeling so poorly. Her ears have really hurt her today too and says it's harder to hear. So the dr. said to have her get up and take a shower as soon as she is feeling better. She needs to be up as much as possible to get her body a little more back to normal. I have to make sure she has a good pair of sunglasses for the ride home because of the light. Keeping things dark really does help her.
Megan chatted with Kelsey, Dad and aunt Marie this evening for a bit and then took another small nap. She seemed to be feeling better so she asked to take a shower. The nurse offered her to go to the tub room and take a nice bath. She was super excited! There's even a TV in there and she thought she might turn it on. That would make the first time she turned on the TV in these 12 days in the hospital. :0) She says when she's done she's ready to take all of her medicines and give her some Benedryl to knock her out.
I guess we'll see what tomorrow brings...
Thursday, February 17, 2011
Feb. 16-17
Wednesday morning we were up and a'tem to get to the nuclear medicine dr. We had to go by wheelchair for this trip and Megan wasn't very excited. By the end of it she was crying in pain to get back to her bed. :( We chatted with the dr. about the radioactive iodine treatment that he will give her for the thyroid cancer. In a week she will stop taking her thyroid medine and start eating a low-iodine diet for the two weeks prior to getting the treatment. So, she is barely eating as it is, and now she will have to have a very restricted diet and manage to get 70 grams of protein each day...should be an interesting 2 weeks. No dairy, fish, pasta, breads, potatoes, beef, salt, etc...ugh. Luckily the dietician came in today and gave us examples of good sources of protein and the right amounts. If only half of them weren't dairy and meat. :( Looks like these Resource drinks by Boost might work but need to check with the dr. to make sure.
Today Megan is wondering if there can be anything else rare about her - she even has the rare O+ blood type. She's just amazed by it all.
The speech pathologist came by and taught Megan to chew her food while having her head turned to the left. This will help keep the food away from the right side of the neck where the trauma from the surgery happened. It actually helped. The dietician said to start slow and work up to more foods, but to try to get as much protein as possible. So she has to give up the gatorade and go for the chocolate milk. I said there are worse things than that... :)
This afternoon Carol went with Ms. Megan over to the eye dr. so he could test her for all kinds of things. It was not a fun appointment. Lots of light. No laying. Delays getting her in the office. Delays with transportation getting her back to her room. By the time she got back she was just crying in pain and needed to laying silent in darkness. Poor baby... Not sure of the results yet...
The oncologist came by and said we should start thinking about getting home. I have to learn how to give Megan her shots in the stomach twice a day, so I'm going to attempt that tonight...and she isn't excited about having me do it...silly girl doesn't trust her mom with a needle. :0)
Physical therapy is going to come tomorrow to help her get up and be more steady on her feet. She's been laying in a bed for so many weeks that she has a hard time walking - afraid her legs are going to buckle under her. Dr. is thinking maybe a walker might help.
Dr. said he can get a nurse to come to the house to take her blood for the labs they still need run very regularly. They have to measure the levels of the blood thinner shots to make sure it's ok. He is going to get all her medicines ready here at the hospital so we don't have to run and get them once we're home. That's a help.
Taking her off the TPN/feeding tube made her blood sugars go back down to normal today. It combined with the steroids were causing her to have 300 sugar levels.
Oncologist gave her the green light to go to Girl Scout camp this summer. He said she'll still be on the blood thinners in June, so she has to be careful, be he thinks she should be able to go. She is sooo excited!
Today Megan is wondering if there can be anything else rare about her - she even has the rare O+ blood type. She's just amazed by it all.
The speech pathologist came by and taught Megan to chew her food while having her head turned to the left. This will help keep the food away from the right side of the neck where the trauma from the surgery happened. It actually helped. The dietician said to start slow and work up to more foods, but to try to get as much protein as possible. So she has to give up the gatorade and go for the chocolate milk. I said there are worse things than that... :)
This afternoon Carol went with Ms. Megan over to the eye dr. so he could test her for all kinds of things. It was not a fun appointment. Lots of light. No laying. Delays getting her in the office. Delays with transportation getting her back to her room. By the time she got back she was just crying in pain and needed to laying silent in darkness. Poor baby... Not sure of the results yet...
The oncologist came by and said we should start thinking about getting home. I have to learn how to give Megan her shots in the stomach twice a day, so I'm going to attempt that tonight...and she isn't excited about having me do it...silly girl doesn't trust her mom with a needle. :0)
Physical therapy is going to come tomorrow to help her get up and be more steady on her feet. She's been laying in a bed for so many weeks that she has a hard time walking - afraid her legs are going to buckle under her. Dr. is thinking maybe a walker might help.
Dr. said he can get a nurse to come to the house to take her blood for the labs they still need run very regularly. They have to measure the levels of the blood thinner shots to make sure it's ok. He is going to get all her medicines ready here at the hospital so we don't have to run and get them once we're home. That's a help.
Taking her off the TPN/feeding tube made her blood sugars go back down to normal today. It combined with the steroids were causing her to have 300 sugar levels.
Oncologist gave her the green light to go to Girl Scout camp this summer. He said she'll still be on the blood thinners in June, so she has to be careful, be he thinks she should be able to go. She is sooo excited!
Tuesday, February 15, 2011
Feb. 15
Megan was feeling much better this morning than yesterday. Yesterday she slept the entire day until about 8 pm and then went back to bed at 10:30 and slept through the night. I think maybe the weekend of visitors and playing on the laptop wore her out. So this morning was a much better day to have to get on a weird chair to be taken for the swallow test. All of her other tests she's had to be taken in her bed. So they had her drink and eat Sprite, pudding, teddy graham, and frito with barium in them. It all said her swallow is weak, but working fine. So starting tonight she should start eating three bites of a soft food and gradually eat a bit more at each meal. So she just finished three bites of mashed potatoes and gravy. And that was all she wanted anyway so it worked perfectly.
After the test we came back to the room and rested for awhile until the oncologist came. He said all of her ultrsound scans from yesterday came back negative - yea! Then he told us about the lumbar puncture he was about to do. The nurses got her ready and she rode down to the PICU in her bed. The procedure went well. Her level of fluid was 24 cc's, and normal is 10 or less, but the normal psuedo tumor level is 30, so it wasn't horrible. He took off 9 so she is down to 15. We're hopeful it will help the pain in her head, eyes and ears.
While they had her sedated, the nurses, and then the oncologist, took out the one needle from her port. Then they put in a new needle in her right port and then had trouble accessing the difficult one, so the oncologist stepped in and accessed her left side port. Both went in and they hooked her back up to her feeding tubes and saline bag. Sooo excited! She still has her IV in her arm just in case, but hopefully they will be able to take it out.
So we came back and took a nappy until Megan actually woke me up asking if I was going to order dinner. She kept chatting away and I wanted to sleep some more...but up I got. :0)
Then the opthomologist came by and looked at her eyes again. He said they look the same. She still has pressure on the eyes causing her blurred and double vision. It gets better and worse off and on...kinda weird. He said the Horner's syndrom might not get better. He said to wait awhile and if it doesn't get better, she can have another surgery to repair the muscle and make her eyelid work better again. Great, another surgery needed. One for voice, now one for her eye. Going to be a busy summer between camps and surgeries!
Aunt Ann came by at lunch for a visit and Mr. Hale, the 7th grade principal at DuBray, came by tonight. He brought a banner that the 7th grade gold team made, all kinds of cards from her friends and teachers, plus flowers and candy. Carol dropped off a squishy peace sign pillow and the coolest sheets that fit an extra long twin bed. The hospital sheets were making her really itchy and the regular twin sheets we had from home didn't really fit. Everyone all day has commented how cool her sheets are. We made the oncologist promise not to get any blood on them during the spinal tap. :) Megan's one girl scout troop made her cards and a poster board and gave her an adorable blue dog that is wearing their troop shirt. So cute! My work sent a banner with lots of get well wishes and Mrs. Latore's 4th grade class from Mid Rivers Elementary made a big yellow banner "sending her sunshine and rainbows". Her 7th grade teachers sent her flowers and a very cute teddy bear that is hugging the vase. Her whole room is decorated with all the cards she has gotten from this hospital visit, plus the banners, flowers, gifts and balloons. The oncologist said it's the most colorful room in the whole hospital. :0) Thank you's to everyone!!
After the test we came back to the room and rested for awhile until the oncologist came. He said all of her ultrsound scans from yesterday came back negative - yea! Then he told us about the lumbar puncture he was about to do. The nurses got her ready and she rode down to the PICU in her bed. The procedure went well. Her level of fluid was 24 cc's, and normal is 10 or less, but the normal psuedo tumor level is 30, so it wasn't horrible. He took off 9 so she is down to 15. We're hopeful it will help the pain in her head, eyes and ears.
While they had her sedated, the nurses, and then the oncologist, took out the one needle from her port. Then they put in a new needle in her right port and then had trouble accessing the difficult one, so the oncologist stepped in and accessed her left side port. Both went in and they hooked her back up to her feeding tubes and saline bag. Sooo excited! She still has her IV in her arm just in case, but hopefully they will be able to take it out.
So we came back and took a nappy until Megan actually woke me up asking if I was going to order dinner. She kept chatting away and I wanted to sleep some more...but up I got. :0)
Then the opthomologist came by and looked at her eyes again. He said they look the same. She still has pressure on the eyes causing her blurred and double vision. It gets better and worse off and on...kinda weird. He said the Horner's syndrom might not get better. He said to wait awhile and if it doesn't get better, she can have another surgery to repair the muscle and make her eyelid work better again. Great, another surgery needed. One for voice, now one for her eye. Going to be a busy summer between camps and surgeries!
Aunt Ann came by at lunch for a visit and Mr. Hale, the 7th grade principal at DuBray, came by tonight. He brought a banner that the 7th grade gold team made, all kinds of cards from her friends and teachers, plus flowers and candy. Carol dropped off a squishy peace sign pillow and the coolest sheets that fit an extra long twin bed. The hospital sheets were making her really itchy and the regular twin sheets we had from home didn't really fit. Everyone all day has commented how cool her sheets are. We made the oncologist promise not to get any blood on them during the spinal tap. :) Megan's one girl scout troop made her cards and a poster board and gave her an adorable blue dog that is wearing their troop shirt. So cute! My work sent a banner with lots of get well wishes and Mrs. Latore's 4th grade class from Mid Rivers Elementary made a big yellow banner "sending her sunshine and rainbows". Her 7th grade teachers sent her flowers and a very cute teddy bear that is hugging the vase. Her whole room is decorated with all the cards she has gotten from this hospital visit, plus the banners, flowers, gifts and balloons. The oncologist said it's the most colorful room in the whole hospital. :0) Thank you's to everyone!!
Monday, February 14, 2011
Feb. 14
Happy Valentine's Day to everyone!
Megan woke up today not feeling well and hasn't gotten any better so far. She's had some bad stomach pain, dizziness, nausia and just a small amount of head pain. The decreased head pain is good! Her vision seems to be worse though, she can't really read at all right now.
Today she had ultrasounds of her liver, kidneys, pancreas, bladder, gall bladder and heart. They are checking to see if she has other symptoms of tuberous sclerosis in her other organs. If not, she might not have TSC. If she does, then we have a probable diagnosis. This neurologist isn't all the way convinced, but he's suspicious.
Unfortunately, he did order for her to have a spinal tap tomorrow, so they have to lower the amount of blood thinners they are giving her, in case they nick something during the procedure, they don't want her to bleed too much. He says if indeed her brain swelling is all from the vein thrombosis, it might really help relieve the pressure that has been giving her so much pain in her head, ears and the blurry and double vision. She's going to be happy to know she is going to be put to sleep for the test so show won't know a thing. So while she's asleep, they are going to try to fix her port and get the second side re-accessed and working, and re-access the first port that is working (has to be done once a week, if accessed) - and she won't feel a thing! Oh, thank the Lord almighty for that one. I don't think we can go through that pain and suffering again while awake.
The oncologist ordered a speech evaluation followed by a barium swallow test and that will be tomorrow also. She still can't swallow anything more than a shake. She hasn't eaten real food in like 18 days I think. But, she has the TPN and Lipids they're giving her for nutrition, which helps. But, they are giving her very high blood sugar readings, making her almost diabetic at the moment, so he is working on adjusting her sugars to get them back down to normal. He says it's from the steroids she's getting.
So, it's 6 pm and we're sitting in the quiet and dark...and she just kinda yelled out at Kelsey in her sleep...kinda funny. Oh ya, yesterday early morning, she woke up seeing an old lady in a pink pajama gown floating up to the left of her...I said maybe we need to get a shrink next...the oncologist laughed. He said sometimes the steroids can make you have episodes like that...I think he was just being nice... :)
Megan woke up today not feeling well and hasn't gotten any better so far. She's had some bad stomach pain, dizziness, nausia and just a small amount of head pain. The decreased head pain is good! Her vision seems to be worse though, she can't really read at all right now.
Today she had ultrasounds of her liver, kidneys, pancreas, bladder, gall bladder and heart. They are checking to see if she has other symptoms of tuberous sclerosis in her other organs. If not, she might not have TSC. If she does, then we have a probable diagnosis. This neurologist isn't all the way convinced, but he's suspicious.
Unfortunately, he did order for her to have a spinal tap tomorrow, so they have to lower the amount of blood thinners they are giving her, in case they nick something during the procedure, they don't want her to bleed too much. He says if indeed her brain swelling is all from the vein thrombosis, it might really help relieve the pressure that has been giving her so much pain in her head, ears and the blurry and double vision. She's going to be happy to know she is going to be put to sleep for the test so show won't know a thing. So while she's asleep, they are going to try to fix her port and get the second side re-accessed and working, and re-access the first port that is working (has to be done once a week, if accessed) - and she won't feel a thing! Oh, thank the Lord almighty for that one. I don't think we can go through that pain and suffering again while awake.
The oncologist ordered a speech evaluation followed by a barium swallow test and that will be tomorrow also. She still can't swallow anything more than a shake. She hasn't eaten real food in like 18 days I think. But, she has the TPN and Lipids they're giving her for nutrition, which helps. But, they are giving her very high blood sugar readings, making her almost diabetic at the moment, so he is working on adjusting her sugars to get them back down to normal. He says it's from the steroids she's getting.
So, it's 6 pm and we're sitting in the quiet and dark...and she just kinda yelled out at Kelsey in her sleep...kinda funny. Oh ya, yesterday early morning, she woke up seeing an old lady in a pink pajama gown floating up to the left of her...I said maybe we need to get a shrink next...the oncologist laughed. He said sometimes the steroids can make you have episodes like that...I think he was just being nice... :)