So I've been working on a little project in my spare time! After talking with someone last week and go over everything we've been through for the past 6 years I realized it's a lot to remember. She kept asking questions and I kept digging in the back of my head about what had happened and what we'd been through. It's really best to see our life through photos. So I made an online time line. You can click each link below to see the different years and affects of ROHHAD Syndrome and Neuroblastoma Cancer and our daughter's life.
PREGNANCY
BIRTH TO AGE 1
AGE 1 TO AGE 2
AGE 2 TO AGE 3
AGE 3 TO AGE 4
AGE 4 TO AGE 5
I'm still working age 5 to age 6 but last year was an insane year of isolation and tooooooo many doctor visits. We spent about 180 days at Hopkins in some form. So that leaves me with lots of photos to sift through to tell the story.
I hope you enjoy our first five years as we have many more to live. I can't say how hard this has been for me to work on. To look back and remember the pain, anxiety, worry, and how we are still living with this horrible disease and still have no more information about it than we did 2 1/2 years ago at first diagnosis.
Love to all
Showing posts with label central hypoventilation. Show all posts
Showing posts with label central hypoventilation. Show all posts
Wednesday, February 24, 2010
Sunday, November 22, 2009
Memory Lane
I've been having a few issues lately - feeling like we've missed a few years of our baby girl's life. She's been stuck in hospitals for more than half her life. Today I started working on a memory book for her and going through the photos was hard. Everything was so normal.....at least for the first 2 years of almost 6 now.
Haven as a newborn. Every time her daddy changed her he would massage her legs. She loved it. She would stretch them out and point the toes up! She was so long and skinny....I kept wondering when she would have Michelin legs.
Her 1 year photos. I took her to Baby's R Us to get some stuff for her birthday and made an impromptu decision to spend too much money on photos. We bought the outfit right there and changed. Plop.....she was all smiles for the photos. She loved having her picture taken.
Age 2. Haven was so active. She'd run around like a crazy girl, dressing up and acting wild. Climbing the furniture and jumping on the couches. She rode this scooter around like crazy. This was a birthday present for her 2nd birthday. She immediately when out and rode around on it.
But that 2nd year turned horrible in July. This is Haven's 3rd birthday party. She had gained so much weight, became very reclusive and extra shy. She didn't know how to be around other children. She didn't want to play and became extremely OCD about everything. We started hospital visits over 6 months ago and at this point she was having lots of stomach pains and bleeding. This was the beginning of the sleep walking.
Age 4. Just a few weeks before this photo we had learned that she has cancer. She was scheduled for surgery immediately following her birthday. This was a very high stress time in our family. I cried when I cut Haven's hair - but I still have it saved. She had such beautiful blonde straight hair. Never did I know there was a tumor hidden in her abdomen and an extremely rare syndrome causing all of her issues.
Haven as a newborn. Every time her daddy changed her he would massage her legs. She loved it. She would stretch them out and point the toes up! She was so long and skinny....I kept wondering when she would have Michelin legs.Her 1 year photos. I took her to Baby's R Us to get some stuff for her birthday and made an impromptu decision to spend too much money on photos. We bought the outfit right there and changed. Plop.....she was all smiles for the photos. She loved having her picture taken.Age 2. Haven was so active. She'd run around like a crazy girl, dressing up and acting wild. Climbing the furniture and jumping on the couches. She rode this scooter around like crazy. This was a birthday present for her 2nd birthday. She immediately when out and rode around on it.But that 2nd year turned horrible in July. This is Haven's 3rd birthday party. She had gained so much weight, became very reclusive and extra shy. She didn't know how to be around other children. She didn't want to play and became extremely OCD about everything. We started hospital visits over 6 months ago and at this point she was having lots of stomach pains and bleeding. This was the beginning of the sleep walking.Age 4. Just a few weeks before this photo we had learned that she has cancer. She was scheduled for surgery immediately following her birthday. This was a very high stress time in our family. I cried when I cut Haven's hair - but I still have it saved. She had such beautiful blonde straight hair. Never did I know there was a tumor hidden in her abdomen and an extremely rare syndrome causing all of her issues.
Age 5. This was this year. She had just gotten off steroids she had been on for a year, cyclosporin, and had done 5 rounds of Rituxan. She was preparing for the most challenging year so far.
As age 6 approaches I can only wonder what is in store for our little baby.
Friday, October 23, 2009
Share Our Stories
HI Everyone.....
Over the past few years of writing Haven's blog we have made many new friends and Haven has a lot of fans out there. That means all of you know about ROHHAD and Neuroblastoma Cancer because you took the time to care for our child as if you really know her. I try to make her blog personal to you so you can connect to her and feel her happiness and sadness and pain and joy. She is precious to us and means the world to us.
As Haven is everything we have, there are more of us out there. More ROHHAD children have been diagnosed over the past year and more have come out to talk and share their stories with us.
I ask that you please check out the "Friends Of Haven" section and read about the children and share their stories. We can only gain recognition of this horrible disease with your help.
Thank you all for helping us take care of our baby and giving hope to all of the families.
Over the past few years of writing Haven's blog we have made many new friends and Haven has a lot of fans out there. That means all of you know about ROHHAD and Neuroblastoma Cancer because you took the time to care for our child as if you really know her. I try to make her blog personal to you so you can connect to her and feel her happiness and sadness and pain and joy. She is precious to us and means the world to us.
As Haven is everything we have, there are more of us out there. More ROHHAD children have been diagnosed over the past year and more have come out to talk and share their stories with us.
I ask that you please check out the "Friends Of Haven" section and read about the children and share their stories. We can only gain recognition of this horrible disease with your help.
Thank you all for helping us take care of our baby and giving hope to all of the families.
Tuesday, June 30, 2009
Hi CY - Day 2
Well it's been a bit crazy around here and we've met many doctors and nurses. But it's nice to know the ones that are assigned to Haven and that they are able to learn about her and this crazy disease.
Haven has been having wild sleep patterns - which we are told is due to the high levels of Cytoxan. I think she even scared her nurse Patel the other night. The nurse told me she came in the room in the middle of the night and Haven told her to be careful because there was a little girl outside her window that keeps staring at her. She told the nurse this over and over. Haven is on the 8th floor!! The nurse was joking and telling us that she wasn't going to come back in here.
Then during a diaper change Haven decided to become a ninja and beat everyone up with her superstrength. Kris said that was around 4am and by the time they were done changing her both had a big sigh of relief.
We finally got to give Haven a shower yesterday. She is required to have a shower each day to keep the germs away. This is a huge task. We have to get the nurses to unhook her cables and wrap up her central line so it does not get wet. Then we had to put a chair in the shower so she wouldn't slip - she fell the last time she was here and took a shower.
After all this we got settled down when the Cytoxan hit her bad. I spent the rest of the afternoon up to my elbows in diarhea! Yea, that was fun!
Around 6:30pm Haven said she was really tired and wanted to take a nap. She was asleep within 30 seconds and about 1 minute later I was calling the nurses and doctors in. She was snoring very loudly and very deep in her chest. The first nurse and I couldn't wake Haven up so she called the Oncologist in and by that time Haven was awake.
She fell back to sleep about 1 minute after they left and I watched her. I took 4 videos so I could prove I wasn't crazy. Her O2 was at 100 and her HR was at 130 resting. Everything looked good but she was extremely loud and having difficulty breathing. I opened the door and both nurses came out of the station and yelled down to me "is that her?". They grabbed the other Oncologist and headed in to our room. He listened to Haven for a few minutes before waking her up. He just wanted a base line to know if it changes over night.
The Hi CY is given to Haven at 10pm. We were going to give her Benadryl to help her relax during the treatment but about 10 minutes before it was to begin we canceled that. I was too worried that putting her in to a deeper sleep during chemo would be a bigger problem than we needed.
Haven has been having wild sleep patterns - which we are told is due to the high levels of Cytoxan. I think she even scared her nurse Patel the other night. The nurse told me she came in the room in the middle of the night and Haven told her to be careful because there was a little girl outside her window that keeps staring at her. She told the nurse this over and over. Haven is on the 8th floor!! The nurse was joking and telling us that she wasn't going to come back in here.
Then during a diaper change Haven decided to become a ninja and beat everyone up with her superstrength. Kris said that was around 4am and by the time they were done changing her both had a big sigh of relief.
We finally got to give Haven a shower yesterday. She is required to have a shower each day to keep the germs away. This is a huge task. We have to get the nurses to unhook her cables and wrap up her central line so it does not get wet. Then we had to put a chair in the shower so she wouldn't slip - she fell the last time she was here and took a shower.After all this we got settled down when the Cytoxan hit her bad. I spent the rest of the afternoon up to my elbows in diarhea! Yea, that was fun!
Around 6:30pm Haven said she was really tired and wanted to take a nap. She was asleep within 30 seconds and about 1 minute later I was calling the nurses and doctors in. She was snoring very loudly and very deep in her chest. The first nurse and I couldn't wake Haven up so she called the Oncologist in and by that time Haven was awake.
She fell back to sleep about 1 minute after they left and I watched her. I took 4 videos so I could prove I wasn't crazy. Her O2 was at 100 and her HR was at 130 resting. Everything looked good but she was extremely loud and having difficulty breathing. I opened the door and both nurses came out of the station and yelled down to me "is that her?". They grabbed the other Oncologist and headed in to our room. He listened to Haven for a few minutes before waking her up. He just wanted a base line to know if it changes over night.
The Hi CY is given to Haven at 10pm. We were going to give her Benadryl to help her relax during the treatment but about 10 minutes before it was to begin we canceled that. I was too worried that putting her in to a deeper sleep during chemo would be a bigger problem than we needed.
Saturday, May 2, 2009
The 30th Annual Blue Cross Broad Street Run
TEAM HAVENToday was the major event! I can't wait to hear about it from Meghan and get some photos for everyone to see!!! Go Team Haven!!!
The team is out running for our Haven at the 30th Annual Blue Cross Broad Street Run in Philadelphia, PA!
NEWS: MEGHAN RAN THE ENTIRE 10 MILES IN THE RAIN ---- THANK YOU TEAM HAVEN FOR WORKING SO HARD TODAY FOR MY BABY GIRL!!! YOU GUYS ROCK!
Friday, April 24, 2009
Cushing's Syndrome and ROHHAD
It is very true that no one knows exactly what ROHHAD "is" or is capable of being. There are cases of ROHHAD children also having Cushing's Syndrome.
What are signs of Cushings: Signs and symptoms of Cushing’s Syndrome vary, but most people with the disorder have upper body obesity, a rounded face, increased fat around the neck, and relatively slender arms and legs. Children tend to be obese with slowed growth rates. Most cases of Cushing’s syndrome are not inherited.
Other common signs and symptoms include
This is very important to us and has been something I have watched for since October 2007. Recently I connected with another mom of a child who has very similar symptoms (and different at the same time) as Haven and other children we know. Susannah was officially diagnosed with Cushing's Syndrome: Micronodular Adrenal Hyperplasia
Haven was tested for Cushing's using the late-night salivary cortisol measurements in 2007. However, since being diagnosed with Ganglioneuroblastoma Cancer and ROHHAD Syndrome we have only done Cortisol testing one other time - this December after going off Prednisone.
I have emailed a few time with Susannah's mom to find out a bit more information before I went to our Endo doctor. Last night I emailed him. He found it very interesting and was happy that I brought Susannah to his attention as a note for Haven. We know ROHHAD has Cushing's cases too so it's always best to seek out everything.
I would like to add that Susannah is doing well and after almost 3 week since surgery she is recovering like a champ. She has lost 4 lbs since surgery, her mood swings have gotten better, her urination and drinking has improved. We are very excited for Susannah's family and constantly send our thoughts her way. I thank her very much for sharing her information with us - everything helps - even when you feel you can't offer much for us.
Cushing's Help and Support
http://www.cushie.info/
Cushing’s Support and Research Foundation, Inc.
65 East India Row, Suite 22B
Boston, MA 02110
Phone and Fax: 617–723–3674
Email: cushinfo@csrf.net
Internet: http://www.csrf.net/
The National Endocrine and Metabolic Diseases Information Service
6 Information Way
Bethesda, MD 20892–3569
Phone: 1–888–828–0904
TTY: 1–866–569–1162
Fax: 1–703–738–4929
Email: endoandmeta@info.niddk.nih.gov
Internet: http://endocrine.niddk.nih.gov/
What are signs of Cushings: Signs and symptoms of Cushing’s Syndrome vary, but most people with the disorder have upper body obesity, a rounded face, increased fat around the neck, and relatively slender arms and legs. Children tend to be obese with slowed growth rates. Most cases of Cushing’s syndrome are not inherited.
Other common signs and symptoms include
- severe fatigue
- weak muscles
- high blood pressure
- high blood glucose
- increased thirst and urination
- irritability, anxiety, or depression
- a fatty hump between the shoulders
This is very important to us and has been something I have watched for since October 2007. Recently I connected with another mom of a child who has very similar symptoms (and different at the same time) as Haven and other children we know. Susannah was officially diagnosed with Cushing's Syndrome: Micronodular Adrenal Hyperplasia
Haven was tested for Cushing's using the late-night salivary cortisol measurements in 2007. However, since being diagnosed with Ganglioneuroblastoma Cancer and ROHHAD Syndrome we have only done Cortisol testing one other time - this December after going off Prednisone.
I have emailed a few time with Susannah's mom to find out a bit more information before I went to our Endo doctor. Last night I emailed him. He found it very interesting and was happy that I brought Susannah to his attention as a note for Haven. We know ROHHAD has Cushing's cases too so it's always best to seek out everything.
I would like to add that Susannah is doing well and after almost 3 week since surgery she is recovering like a champ. She has lost 4 lbs since surgery, her mood swings have gotten better, her urination and drinking has improved. We are very excited for Susannah's family and constantly send our thoughts her way. I thank her very much for sharing her information with us - everything helps - even when you feel you can't offer much for us.
Cushing's Help and Support
http://www.cushie.info/
Cushing’s Support and Research Foundation, Inc.
65 East India Row, Suite 22B
Boston, MA 02110
Phone and Fax: 617–723–3674
Email: cushinfo@csrf.net
Internet: http://www.csrf.net/
The National Endocrine and Metabolic Diseases Information Service
6 Information Way
Bethesda, MD 20892–3569
Phone: 1–888–828–0904
TTY: 1–866–569–1162
Fax: 1–703–738–4929
Email: endoandmeta@info.niddk.nih.gov
Internet: http://endocrine.niddk.nih.gov/
Thursday, April 16, 2009
Pulmonary, Oncology, Cardiology - Oh My!
Well we made it through. The past two days have been filled with lots of doctors and lots of talking!
PULMONARY:
We were very happy with this appointment. I really like our doctor. He listened to everything, explained the difference between obstructive sleep apnea vs. central hypoventilation and how they see it in a sleep study, he had talked to Oncology before meeting with us so he already knew about Haven and pulled up her records while we were in there. It was great. We spent over an hour with him.
A few areas discussed:
Haven's breathing and where she is right now: he noted that her sleep studies were pretty good right now and that we would continue to monitor her closely for any changes. He said her last sleep study showed her highest CO2 level at 49 and when she starts to pass 50 is where the concern would be. We have a sleep study scheduled for August 15th and a follow up appointment with him on July 23rd.
He did say he didn't expect Haven would suddenly stop breathing in the next month or even the next 6 months but then reminded us that he can never say that for certainty because we don't know how ROHHAD acts in every child. At most, he said she would probably only need to go on a bi-pap machine in the next 6 months but didn't think we should worry about that yet.
He mentioned bringing Neurology in now to monitor possible seizure activity during her next sleep study. Doesn't mean she is going to have a seizure but Haven has a history and since this hasn't been monitored in over a year he would like another record of her brain in that department.
He is a bit concerned with her sleep walking and talking. More for her safety than anything plus we were sure to explain to him that although her sleep walking drives us crazy and doesn't let us sleep - it also comforts us because if she's screaming and talking we know she's breathing.
He ordered a pulse oximeter for Haven to use at night while sleeping. They said it would be set to alarm if she reaches 94....I am sure we will hear many alarms as Haven is usually around 95-96 and a little drop will cause an alarm. Kris received a call tonight about the delivery! I did briefly discuss her sleep walking and machines but he was not worried. We will have to spot check her stats - we'll have different times at night that we will have to record them.
We discussed her ABG results that were done while under anesthesia. He is almost discounting them because the readings would be altered by the intubation and oxygen given to her. So we will have to have an ABG test while awake. We did not do this today - as he wanted Haven to meet him first without pokes and it hurts a lot.
He is highly recommending us to go to Chicago to meet with Dr. Weese-Mayer. He said he has talked to her and discussed Haven. Oncology has also talked with her about Haven. He is concerned that there could be something they are missing and wants to have a full evaluation done by Dr. Weese-Mayer and then get the results back here. He also would like to have Haven's full studies in the research paperwork to help other children with ROHHAD. I have emailed the team at RUSH (thank you Julie for all the paperwork). We'll discuss this with Oncology next week.
We discussed Haven's allergy to Ketamine. He absolutely doesn't believe it's specifically Ketamine related. He told us that a ROHHAD episode (Respiratory Failure) can easily be triggered by ANY anesthesia. Haven must be required to be intubated without question at any procedure done. He told us to make sure when she does have anesthesia that we require them to monitor her CO2 levels while giving her oxygen. He said CO2 levels can rise dangerously if not monitored at the same time in a ROHHAD child. We have agreed to have her intubated on every anesthesia procedure due to her seizure activities and respiratory failure a few times while under anesthesia.
The funniest thing we heard: he said he bets that Haven can stay under water for a couple of minutes and have no problem at all. She lacks the function of panic that would tell her she needs to get to the surface to breathe. She can withstand a high level of CO2 - which a normal person can not and they would rush to the surface. We didn't take him up on the bet!
ONCOLOGY:
We went to Oncology following Pulmonary. Haven needed to have her levels and blood work done. When we met with Cardiology yesterday he wanted to have her tested for Anemia. So this was done today as well. We will not have results back until next week. Everything went as planned here.
Child Life talked to us about Sunrise Camp for Kids with Cancer. So we are going to sign Haven up in the 5 year old camp. It's a daily camp (she doesn't stay over). It's only for kids with Cancer. There are Pediatric Oncologists and Oncology nurses on site. Our own Nurse Katie volunteers at the camp and Kim at Child Life is there. We think it will be really good for Haven. It's free for her to go and she will have a blast doing crafts. This will be in August.
CARDIOLOGY
Next we went over to Pediatric Cardiology to get Haven hooked up on her holter. We are monitoring her heart rate. She runs high so the doctor said he would like to see her have fluctuations and get down in to the 80's during sleep. We will get the results from him next week. He doesn't want to put her on medication because she is already on so much. He wants to have an Echocardiogram done every 4 - 6 months to monitor her.
Here is Miss Haven with the heart monitor on. She was happy it was in a little purse. We were worried it was going to be too big but they said this is the size everyone gets. The monitor is in the little bag and it hangs around her neck. She has to sleep and everything with it on.
PULMONARY:
We were very happy with this appointment. I really like our doctor. He listened to everything, explained the difference between obstructive sleep apnea vs. central hypoventilation and how they see it in a sleep study, he had talked to Oncology before meeting with us so he already knew about Haven and pulled up her records while we were in there. It was great. We spent over an hour with him.
A few areas discussed:
Haven's breathing and where she is right now: he noted that her sleep studies were pretty good right now and that we would continue to monitor her closely for any changes. He said her last sleep study showed her highest CO2 level at 49 and when she starts to pass 50 is where the concern would be. We have a sleep study scheduled for August 15th and a follow up appointment with him on July 23rd.
He did say he didn't expect Haven would suddenly stop breathing in the next month or even the next 6 months but then reminded us that he can never say that for certainty because we don't know how ROHHAD acts in every child. At most, he said she would probably only need to go on a bi-pap machine in the next 6 months but didn't think we should worry about that yet.
He mentioned bringing Neurology in now to monitor possible seizure activity during her next sleep study. Doesn't mean she is going to have a seizure but Haven has a history and since this hasn't been monitored in over a year he would like another record of her brain in that department.
He is a bit concerned with her sleep walking and talking. More for her safety than anything plus we were sure to explain to him that although her sleep walking drives us crazy and doesn't let us sleep - it also comforts us because if she's screaming and talking we know she's breathing.
He ordered a pulse oximeter for Haven to use at night while sleeping. They said it would be set to alarm if she reaches 94....I am sure we will hear many alarms as Haven is usually around 95-96 and a little drop will cause an alarm. Kris received a call tonight about the delivery! I did briefly discuss her sleep walking and machines but he was not worried. We will have to spot check her stats - we'll have different times at night that we will have to record them.
We discussed her ABG results that were done while under anesthesia. He is almost discounting them because the readings would be altered by the intubation and oxygen given to her. So we will have to have an ABG test while awake. We did not do this today - as he wanted Haven to meet him first without pokes and it hurts a lot.
He is highly recommending us to go to Chicago to meet with Dr. Weese-Mayer. He said he has talked to her and discussed Haven. Oncology has also talked with her about Haven. He is concerned that there could be something they are missing and wants to have a full evaluation done by Dr. Weese-Mayer and then get the results back here. He also would like to have Haven's full studies in the research paperwork to help other children with ROHHAD. I have emailed the team at RUSH (thank you Julie for all the paperwork). We'll discuss this with Oncology next week.
We discussed Haven's allergy to Ketamine. He absolutely doesn't believe it's specifically Ketamine related. He told us that a ROHHAD episode (Respiratory Failure) can easily be triggered by ANY anesthesia. Haven must be required to be intubated without question at any procedure done. He told us to make sure when she does have anesthesia that we require them to monitor her CO2 levels while giving her oxygen. He said CO2 levels can rise dangerously if not monitored at the same time in a ROHHAD child. We have agreed to have her intubated on every anesthesia procedure due to her seizure activities and respiratory failure a few times while under anesthesia.
The funniest thing we heard: he said he bets that Haven can stay under water for a couple of minutes and have no problem at all. She lacks the function of panic that would tell her she needs to get to the surface to breathe. She can withstand a high level of CO2 - which a normal person can not and they would rush to the surface. We didn't take him up on the bet!
ONCOLOGY:
We went to Oncology following Pulmonary. Haven needed to have her levels and blood work done. When we met with Cardiology yesterday he wanted to have her tested for Anemia. So this was done today as well. We will not have results back until next week. Everything went as planned here.
Child Life talked to us about Sunrise Camp for Kids with Cancer. So we are going to sign Haven up in the 5 year old camp. It's a daily camp (she doesn't stay over). It's only for kids with Cancer. There are Pediatric Oncologists and Oncology nurses on site. Our own Nurse Katie volunteers at the camp and Kim at Child Life is there. We think it will be really good for Haven. It's free for her to go and she will have a blast doing crafts. This will be in August.
CARDIOLOGY
Next we went over to Pediatric Cardiology to get Haven hooked up on her holter. We are monitoring her heart rate. She runs high so the doctor said he would like to see her have fluctuations and get down in to the 80's during sleep. We will get the results from him next week. He doesn't want to put her on medication because she is already on so much. He wants to have an Echocardiogram done every 4 - 6 months to monitor her.
Here is Miss Haven with the heart monitor on. She was happy it was in a little purse. We were worried it was going to be too big but they said this is the size everyone gets. The monitor is in the little bag and it hangs around her neck. She has to sleep and everything with it on.
Here are a few of the leads. These are on her upper chest. There are more that are up on the side of her neck and all on her belly area. She is doing pretty well but she keeps saying the tape is pulling. Luckily we don't have a hairy chest to worry about. She is definitely concerned about taking all of them off.
She is always concerned about someone putting something sticky on her port and messing it up. So she always tells nurses and doctors not to touch her port and to make sure stickies don't get on it. Luckily - we didn't have to have any there.
Well, this is long but it's been a long day. I'm going on my 4th day straight of a constant migraine. I hope Haven sleeps tonight. And I'm super excited it's Friday tomorrow and NO DOCTORS!!!!
Love to all!
Tuesday, April 14, 2009
Cardiology
Tomorrow will be our first meeting with Cardiology. I'm not sure what will be discussed or how we will begin bringing them in to the mix of Haven. But I have been concerned about her heart so I'm sure it will be a good meeting. Our appt is at 8:15am so it will be an early leave to get through traffic.
I'll update if we have anything to report.
If you look to the right sidebar - I have slowly been updating and organizing blog posts. As you can see it is now giving me more work to do but easier to keep updates on everyone, news about our illnesses, and cool stories from our friends. I have a lot more work to do and will continue to update each one.
thank you to everyone for always checking up on our baby!
I'll update if we have anything to report.
If you look to the right sidebar - I have slowly been updating and organizing blog posts. As you can see it is now giving me more work to do but easier to keep updates on everyone, news about our illnesses, and cool stories from our friends. I have a lot more work to do and will continue to update each one.
thank you to everyone for always checking up on our baby!
Tuesday, March 31, 2009
Making changes -- Procrastinating
Last night I had a bit of ADD. I started off preparing to pay medical bills for the months of January and February. But once I counted out 37 envelopes filled with bills which meant that Haven had gone to the hospital 39 times in 2 months and that just kinda left me mindless.
So I decided instead that I would look at the bills this weekend and do something more fun. So I have started to make a few changes to her site. I talked with Kris about building a web site for me. Hey, he's been making web sites for over 11 years so I might as well take advantage of it since it's free!!!
So probably throughout the weekend you will notice a few changes to her site. I want to organize everything on here because sometimes I have to dig through to find things I wrote about 6 months ago. Plus Haven has had over 15,000 visitors since I started this site in December 2007 when we were first diagnosed with the Neuroblastoma Cancer.
So I decided instead that I would look at the bills this weekend and do something more fun. So I have started to make a few changes to her site. I talked with Kris about building a web site for me. Hey, he's been making web sites for over 11 years so I might as well take advantage of it since it's free!!!
So probably throughout the weekend you will notice a few changes to her site. I want to organize everything on here because sometimes I have to dig through to find things I wrote about 6 months ago. Plus Haven has had over 15,000 visitors since I started this site in December 2007 when we were first diagnosed with the Neuroblastoma Cancer.
Haven's Visitor Map Since July 2007
Haven is going to help with some of the design changes so it should be a fun little project for us and it will give me a reason to get my mind off the many worries and concerns I've had recently.
A few changes but this is not the official site I want yet:
Haven's Story
ROHHAD Children
More to come
Friday, March 13, 2009
Pre-Op appt
Haven and I met with her Pediatrician today. It was a great meeting - we talked with her doctor for about an hour about everything that has been going on and how I feel and how Kris is doing.
Haven's Pre-Op exam was good. Mainly it's to review all of her medications, anesthesia she is not allowed to have, any past issues we've had with surgeries or anesthesia.
I received some info from Haven's medical files. Which is always nice to have them in our files.
It's weird......the doctors tell us that Haven has a serious disease and all that. But it's not until I read it in her files from last week where her doctors states "serious illness which is life-threatening" that it actually hits you. ROHHAD is a disease my daughter could easily die from --- not her Cancer.
All of our children with ROHHAD are in a life-threatening position that we have no control of. Our children may look fine today and be in the hospital for months at a time tomorrow.
Miss Haven is in Chemo all day today. This will be her 2nd dose of the Rituxan. We have been closely monitoring the toes for Tuesday's appointment.
Hope everyone has a happy Friday the 13th!
Haven's Pre-Op exam was good. Mainly it's to review all of her medications, anesthesia she is not allowed to have, any past issues we've had with surgeries or anesthesia.
I received some info from Haven's medical files. Which is always nice to have them in our files.
It's weird......the doctors tell us that Haven has a serious disease and all that. But it's not until I read it in her files from last week where her doctors states "serious illness which is life-threatening" that it actually hits you. ROHHAD is a disease my daughter could easily die from --- not her Cancer.
All of our children with ROHHAD are in a life-threatening position that we have no control of. Our children may look fine today and be in the hospital for months at a time tomorrow.
Miss Haven is in Chemo all day today. This will be her 2nd dose of the Rituxan. We have been closely monitoring the toes for Tuesday's appointment.
Hope everyone has a happy Friday the 13th!
Sunday, March 1, 2009
The Kuwait Medical Journal - CCHS or LO-CHS/HD or ROHHAD
YES I SENT AN EMAIL TO THE DOCTOR AND HOSPITAL - IF THEY READ IT, GREAT!
My expert diagnosis - ROHHAD not LO-CHS/HD....but that's my opinion. You can read the entire article HERE.
December 2007
THE KUWAIT MEDICAL JOURNAL
Case Report
Late Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction in a Kuwaiti Girl
Othman A Aboushanab, Saad A Alotaibi, Yasser A Shaalan
Department of Pediatrics, Farwaniya Hospital, Kuwait
Kuwait Medical Journal 2007, 39 (4): 376-378
ABSTRACT
Late onset central hypoventilation syndrome (LO-CHS) is now considered a well-established disease that develops in previously normal children after infancy and has been regarded as a distinct entity from the congenital central hypoventilation syndrome (CCHS). Both conditions are associated with neural crest tumours, but hypothalamic dysfunction (HD) is a feature of LO-CHS and not CCHS. We report a case of LO-CHS with HD (LO-CHS / HD) who presented in respiratory failure at the age of five years.
INTRODUCTION
Congenital central hypoventilation syndrome (CCHS) is characterized by abnormal autonomic control of breathing that results in severe hypoventilation occurring initially during sleep. It was first described in children by Mellins et al in 1970[1]. In most cases the onset of CCHS occurs in the neonatal period or during the early months of life[2]. A form of LO-CHS has been described in the literature. Katz et al[3] proposed that late onset central hypoventilation syndrome associated with hypothalamic dysfunction (LO-CHS/HD) is a distinct clinical syndrome. Both CCHS and LO-CHS have been associated with neural crest tumours and they generally occur in a histologically normal central nervous system (CNS). Both conditions have also been associated with PHOX2B gene mutation[4]. HD has been frequently associated with LO-CSH but not CCHS. We report on a case of LO-CSH/HD presenting in a five year-old Kuwaiti girl.
CASE REPORT
This Kuwaiti girl was five years old when she was first admitted to our pediatric department in coma, with marked hypoxemia and respiratory failure. She was successfully resuscitated and transferred to ICU for mechanical ventilation. Initial blood gas showed acute on top of chronic respiratory acidosis.
My expert diagnosis - ROHHAD not LO-CHS/HD....but that's my opinion. You can read the entire article HERE.
December 2007
THE KUWAIT MEDICAL JOURNAL
Case Report
Late Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction in a Kuwaiti Girl
Othman A Aboushanab, Saad A Alotaibi, Yasser A Shaalan
Department of Pediatrics, Farwaniya Hospital, Kuwait
Kuwait Medical Journal 2007, 39 (4): 376-378
ABSTRACT
Late onset central hypoventilation syndrome (LO-CHS) is now considered a well-established disease that develops in previously normal children after infancy and has been regarded as a distinct entity from the congenital central hypoventilation syndrome (CCHS). Both conditions are associated with neural crest tumours, but hypothalamic dysfunction (HD) is a feature of LO-CHS and not CCHS. We report a case of LO-CHS with HD (LO-CHS / HD) who presented in respiratory failure at the age of five years.
INTRODUCTION
Congenital central hypoventilation syndrome (CCHS) is characterized by abnormal autonomic control of breathing that results in severe hypoventilation occurring initially during sleep. It was first described in children by Mellins et al in 1970[1]. In most cases the onset of CCHS occurs in the neonatal period or during the early months of life[2]. A form of LO-CHS has been described in the literature. Katz et al[3] proposed that late onset central hypoventilation syndrome associated with hypothalamic dysfunction (LO-CHS/HD) is a distinct clinical syndrome. Both CCHS and LO-CHS have been associated with neural crest tumours and they generally occur in a histologically normal central nervous system (CNS). Both conditions have also been associated with PHOX2B gene mutation[4]. HD has been frequently associated with LO-CSH but not CCHS. We report on a case of LO-CSH/HD presenting in a five year-old Kuwaiti girl.
CASE REPORT
This Kuwaiti girl was five years old when she was first admitted to our pediatric department in coma, with marked hypoxemia and respiratory failure. She was successfully resuscitated and transferred to ICU for mechanical ventilation. Initial blood gas showed acute on top of chronic respiratory acidosis.
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