pnutallergymom
Mouseketeer
- Joined
- Jan 9, 2007
Welcome to our Pre-Trip Report. I apologize in advance for the length of this history. Its hard to summarize all that Brigitte has been through.
Our lives would be forever changed on August 18, 2006 by the addition of our fourth child
. There had been many indications early on in the pregnancy that our little girl would be born with major health issues. We just never had any idea how severe they would be.
Finally at 36 weeks the decision was made to induce labor. 14 hours later, Brigitte was born. We knew she wouldn’t be breathing as she had bilateral pleural effusions and she was immediately transferred to the NICU where she would spend the next 11 days. During these days she was intubated and on life support for the first 4 days of life. She was diagnosed with multiple cardiac anomalies and genetics was called in for a consult due to her dysmorphic facial appearance. She was given a clinical diagnosis of Noonan Syndrome by one of the leading NS cardiovascular geneticists in the country at Children’s Hospital Boston.
To date, Brigitte has spent over 240 nights at CHB. She has had 15 major surgeries and over 40 procedures requiring general anesthesia. What we initially thought was a complex heart defect would soon turn into much more. Open heart surgery, being the easiest thing we have faced so far. Who would have thought? She has diagnosis that include Noonan Syndrome, Mild CP, dysautonomia, failure to thrive, low tone, reflux, constipation, global developmental delay, pulmonary stenosis, hypertrophic cardiomyopathy, ASD, intestinal malrotation, laryngeal cleft, strabismus, ptosis, growth hormone deficiency, common variable immunodeficiency, medically induced PTSD, chronic aspiration, asthma, and more I am forgetting. We currently see specialists in the following fields: Cardiology, Genetics, GI, Pulmonary, Gen. Surg, Endocrine, Immunology, Psych, Ophthalmology, Complex Care, Otolaryngology, Orthopedics, Neurology, and Infectious Disease. Her current accessories now include a gtube, a broviac central line, and SMO's. Her current medications are Neurontin, Clonidine, Trazodone, Prevacid, Miralax, Senna, Melatonin, Atropine drops, Flovent, Albuterol, Periactin, Tev-Tropin, and IVIG...we are starting ethanol locks this week as well on her line.
In the last 10 weeks, Brigitte has been hospitalized 3 times and has had a surgery each of those stays. After a marathon run of 18 mo of not gaining an ounce of weight despite having her first 30 day run without an antibiotic and being relatively healthy, the decision was made to start her on TPN. The changes we saw in her in the first 6 weeks were incredible! She started talking, took her first steps and gained almost 4lbs. Then the irritability started and so did the low grade fevers. She had a line infection just 6 weeks after having it placed. We immediately started treatment with Vanco, but then the cultures started to grow out a second bug. She was now growing two different bugs, which later were identified by the CDC in Atlanta as a strain of staph only found in dirt. No idea where this came from, but she was getting worse as the hours went on, so the line came out. We believe that had that line stayed in another 12 hours, she would have been in the PICU. We made the right decision, but Brigitte’s body didn’t agree. So 3 weeks ago, she went back in to have another Broviac placed.
The hospital stays have gotten harder and harder as Brigitte gets older and understands so much more. For the last year, she cries when we pull into the parking garage. It is near impossible to take her temperature, let alone examine her. During one of the recent hospitalizations her team ordered a psych consult where she was diagnosed with PTSD. She is now taking 2 different anxiety meds, and another sleep med just to get through the night.
Despite all she has been through, she is such a happy little girl when she is well. She has made amazing strides in the last few months. TPN has definitely been a miracle for her. She attends a special needs inclusion pre-school 3 days a week. She receives PT, OT and Speech at school, as well as privately at home. We are very optimistic that things will get better as long as we can give her the adequate nutrition she needs. She is very different from most kids with NS. The theory is that she is hyper metabolic and just requires so many more calories than normal…..and more than we can give her. Having an ongoing heart issue isn’t helping matters either!!
So, as I am sure most of you who have “sick kids” can relate, Brigitte sure could use a break! A week of fun!! No doctors, No appointments!! We are super excited and are counting down the days!!
In case you didn’t catch it in the beginning, Brigitte is our 4th child. Brenna is 8. Jake is 7. Sean is 6. The kids have been through so much. It isn’t easy on them either. Not only are they constantly worried they will never see their sister each time she goes to the hospital, they lose mom for a bit too. My husband, Bryan, and I are very lucky to have a wonderful support system. Our parents jump right in and take care of picking up the slack when Brigge is in the hospital. It has made it a bit easier, but nobody can take the place of mom and dad, especially when you are scared. They are growing up to be amazing, compassionate children. I am so very blessed to have them, as is their baby sister. They deserve this trip as much as their sister does. We are so grateful to have been given this opportunity from MAW. What an amazing organization.
As it stands now, our adventure will begin on April 24th- April 30th. We are extending it to May 5th!!! I don’t want to feel rushed at all. If the kids want to spend all day at the pool, then that is fine with us. My goal is to come home relaxed and feel like we are very lucky to be able to extend the time so we can really slow down and enjoy!!
We are staying at Animal Kingdom Lodge and haven’t decided where we will spend the last 5 days. We have an opportunity to stay at the Swan on a really good discount, but haven’t made up our minds yet.
Our lives would be forever changed on August 18, 2006 by the addition of our fourth child
. There had been many indications early on in the pregnancy that our little girl would be born with major health issues. We just never had any idea how severe they would be.Finally at 36 weeks the decision was made to induce labor. 14 hours later, Brigitte was born. We knew she wouldn’t be breathing as she had bilateral pleural effusions and she was immediately transferred to the NICU where she would spend the next 11 days. During these days she was intubated and on life support for the first 4 days of life. She was diagnosed with multiple cardiac anomalies and genetics was called in for a consult due to her dysmorphic facial appearance. She was given a clinical diagnosis of Noonan Syndrome by one of the leading NS cardiovascular geneticists in the country at Children’s Hospital Boston.
To date, Brigitte has spent over 240 nights at CHB. She has had 15 major surgeries and over 40 procedures requiring general anesthesia. What we initially thought was a complex heart defect would soon turn into much more. Open heart surgery, being the easiest thing we have faced so far. Who would have thought? She has diagnosis that include Noonan Syndrome, Mild CP, dysautonomia, failure to thrive, low tone, reflux, constipation, global developmental delay, pulmonary stenosis, hypertrophic cardiomyopathy, ASD, intestinal malrotation, laryngeal cleft, strabismus, ptosis, growth hormone deficiency, common variable immunodeficiency, medically induced PTSD, chronic aspiration, asthma, and more I am forgetting. We currently see specialists in the following fields: Cardiology, Genetics, GI, Pulmonary, Gen. Surg, Endocrine, Immunology, Psych, Ophthalmology, Complex Care, Otolaryngology, Orthopedics, Neurology, and Infectious Disease. Her current accessories now include a gtube, a broviac central line, and SMO's. Her current medications are Neurontin, Clonidine, Trazodone, Prevacid, Miralax, Senna, Melatonin, Atropine drops, Flovent, Albuterol, Periactin, Tev-Tropin, and IVIG...we are starting ethanol locks this week as well on her line.
In the last 10 weeks, Brigitte has been hospitalized 3 times and has had a surgery each of those stays. After a marathon run of 18 mo of not gaining an ounce of weight despite having her first 30 day run without an antibiotic and being relatively healthy, the decision was made to start her on TPN. The changes we saw in her in the first 6 weeks were incredible! She started talking, took her first steps and gained almost 4lbs. Then the irritability started and so did the low grade fevers. She had a line infection just 6 weeks after having it placed. We immediately started treatment with Vanco, but then the cultures started to grow out a second bug. She was now growing two different bugs, which later were identified by the CDC in Atlanta as a strain of staph only found in dirt. No idea where this came from, but she was getting worse as the hours went on, so the line came out. We believe that had that line stayed in another 12 hours, she would have been in the PICU. We made the right decision, but Brigitte’s body didn’t agree. So 3 weeks ago, she went back in to have another Broviac placed.
The hospital stays have gotten harder and harder as Brigitte gets older and understands so much more. For the last year, she cries when we pull into the parking garage. It is near impossible to take her temperature, let alone examine her. During one of the recent hospitalizations her team ordered a psych consult where she was diagnosed with PTSD. She is now taking 2 different anxiety meds, and another sleep med just to get through the night.
Despite all she has been through, she is such a happy little girl when she is well. She has made amazing strides in the last few months. TPN has definitely been a miracle for her. She attends a special needs inclusion pre-school 3 days a week. She receives PT, OT and Speech at school, as well as privately at home. We are very optimistic that things will get better as long as we can give her the adequate nutrition she needs. She is very different from most kids with NS. The theory is that she is hyper metabolic and just requires so many more calories than normal…..and more than we can give her. Having an ongoing heart issue isn’t helping matters either!!
So, as I am sure most of you who have “sick kids” can relate, Brigitte sure could use a break! A week of fun!! No doctors, No appointments!! We are super excited and are counting down the days!!
In case you didn’t catch it in the beginning, Brigitte is our 4th child. Brenna is 8. Jake is 7. Sean is 6. The kids have been through so much. It isn’t easy on them either. Not only are they constantly worried they will never see their sister each time she goes to the hospital, they lose mom for a bit too. My husband, Bryan, and I are very lucky to have a wonderful support system. Our parents jump right in and take care of picking up the slack when Brigge is in the hospital. It has made it a bit easier, but nobody can take the place of mom and dad, especially when you are scared. They are growing up to be amazing, compassionate children. I am so very blessed to have them, as is their baby sister. They deserve this trip as much as their sister does. We are so grateful to have been given this opportunity from MAW. What an amazing organization.
As it stands now, our adventure will begin on April 24th- April 30th. We are extending it to May 5th!!! I don’t want to feel rushed at all. If the kids want to spend all day at the pool, then that is fine with us. My goal is to come home relaxed and feel like we are very lucky to be able to extend the time so we can really slow down and enjoy!!
We are staying at Animal Kingdom Lodge and haven’t decided where we will spend the last 5 days. We have an opportunity to stay at the Swan on a really good discount, but haven’t made up our minds yet.
. So since she is soooooo into Mickey and Minnie, we decided it would be best to stay onsite. Originally, we weren't going to have a rental car, but after meeting with our wonderful wish granters last week, that has changed. So we will be able to attend a few of the events at GKTW
We are very fortunate to be able to extend the vacation so that we can have alot of down time!! Our plans are to do some pool days, some rope drops (but those will mean early nights too) and also some late mornings so that we can stay out late some nights too!!
However the drive from Disney itself to GKTW can take about anywhere from 20-30 mins...but if you have alot of down time, than it should work out good for all.
