Friday, October 15, 2010
Shared by a friend tonight.....
A friend shared this with me after reading my "Picture Perfect" post. It couldn't be more perfect. Enjoy and really listen to the words. Please see the post below as well if you have not already.
Picture Perfect????
If you were to drive by my house this morning when the kids were getting ready for school you would have seen a scene from a movie. Hugs and Kisses, High Fives and Good-byes. A pretty little red head with such bounce in her step carrying an umbrella while her brothers cram in beside her. One with Clark Kent glasses and a backpack almost as big as he. The other, grinning from ear to ear, wearing his Blaze jacket he earned playing on an AAU baseball team this spring. Their smiles are almost contagious. All three walking side by side in the rain, turning back every few seconds to give there momma a wave and blow a kiss goodbye.
Picture Perfect.
What you don't see on the inside of the house is the mom with tears streaming down her face and the 4year old asking "Mama, why you crying?" She cries because the picture on the outside looks so perfect and oh how she longs so badly for it to be so true.....even just for a day. She will go back up the stairs to start saline and heparin flushes, give GTube boluses to one sweet little girl and begin to prepare for major brain surgery for another sweet little boy. You also don't see that the dad hasn't been home in 3 days because he has worked 3 16hr shifts straight and stays at a relatives house close to his work so he can at least get an extra hours sleep each night rather than wasting that precious time sitting in traffic on a long commute to work. He will likely be to tired all weekend to be the dad or husband he really wants to be. His tears flow each day as well because he isn't able to tuck the kids in at night and can only text them each day to see how their day was or hear about the back handspring someone landed at practice last night.
This is just a small glimpse.
The mom and dads pain in this picture is so deep but they live in survival mode. There is no crashing because there isn't anyone to pick up the pieces. If they stop for a second and really take in the reality of their situation, surely it would break just about anyone. How can you break though when you have a family to love and care for? There are still bills that need to be paid and life has to go on. But that's just it...all this family does is exist. Existing in a world that from the outside looking in, looks as pretty as a picture. Nobody will ever understand what really goes on behind closed doors. Nor do I hope that you are ever in a position to truly understand.
All I want to do is cry and cry and cry. I can't. I do not write these things because I want your sympathy. Sympathy is the last thing I need. I write because it makes me feel better. What I really want to do is crawl under the covers and not come out for a few days...better yet, a few weeks. I do not have that luxury. I have snacks to pack, baths to give, homework to help with. I have appointments to go to, doctors to deal with, bill collectors to fight with. No matter how badly I want to break, I can't. Even if I did, then what would that say about me or my family. Then we would be the family with the two sick kids and the mother that went crazy. Its just not that easy.....and hard would be a major understatement.
I don't know what the answer is. I try to hope for the future to be better, but it truly is hard to dance through the storm when you never see any sunshine. I have to laugh at our reality sometimes, because I just don't know what to do anymore and honestly I am sick of pretending everything is great when it isn't. People ask me everyday "How is Brigitte?" My typical response is "Ummm, she's doing ok. Thanks for asking." What I would really like to say goes something like this: Actually, she's a 4 year old little girl who has spent more days in the hospital than she has in her own bed. She is not physically able to eat because her intestines are not working, so an IV in her heart is keeping her alive. Without it she would be dead. Yes, she is home from the hospital and yes, I let her go to school. That is so she can sort of be like a little girl. But most 4 year old little girls aren't eating with a Gtube in their belly or an IV in their heart. They aren't talking to surgeons about possibly needing a colostomy bag. They are running around splashing in puddles or going on playdates when mine only gets to go to PT, OT or Speech. She didn't get to got to the "friend party" at McDonalds today because the germs there could kill her. Instead she spent the day in the house driving her mother crazy because she can't do the things little girls do. She had to have two needles stuck in her legs and blood drawn from her arms twice this week along with having 3 appointments at Children's Hospital. In addition, she now has to be admitted to the hospital next week even when she isn't truly sick because her 7 year old brother has to have brain surgery and the only way she can be taken care of is by a nurse which the State of NH won't let us have because I don't "work"...so she has to be in the hospital when really she doesn't need to be. So, how is Brigitte doing? "Ummm, she's doing ok. Thanks for asking."
Picture Perfect.
What you don't see on the inside of the house is the mom with tears streaming down her face and the 4year old asking "Mama, why you crying?" She cries because the picture on the outside looks so perfect and oh how she longs so badly for it to be so true.....even just for a day. She will go back up the stairs to start saline and heparin flushes, give GTube boluses to one sweet little girl and begin to prepare for major brain surgery for another sweet little boy. You also don't see that the dad hasn't been home in 3 days because he has worked 3 16hr shifts straight and stays at a relatives house close to his work so he can at least get an extra hours sleep each night rather than wasting that precious time sitting in traffic on a long commute to work. He will likely be to tired all weekend to be the dad or husband he really wants to be. His tears flow each day as well because he isn't able to tuck the kids in at night and can only text them each day to see how their day was or hear about the back handspring someone landed at practice last night.
This is just a small glimpse.
The mom and dads pain in this picture is so deep but they live in survival mode. There is no crashing because there isn't anyone to pick up the pieces. If they stop for a second and really take in the reality of their situation, surely it would break just about anyone. How can you break though when you have a family to love and care for? There are still bills that need to be paid and life has to go on. But that's just it...all this family does is exist. Existing in a world that from the outside looking in, looks as pretty as a picture. Nobody will ever understand what really goes on behind closed doors. Nor do I hope that you are ever in a position to truly understand.
All I want to do is cry and cry and cry. I can't. I do not write these things because I want your sympathy. Sympathy is the last thing I need. I write because it makes me feel better. What I really want to do is crawl under the covers and not come out for a few days...better yet, a few weeks. I do not have that luxury. I have snacks to pack, baths to give, homework to help with. I have appointments to go to, doctors to deal with, bill collectors to fight with. No matter how badly I want to break, I can't. Even if I did, then what would that say about me or my family. Then we would be the family with the two sick kids and the mother that went crazy. Its just not that easy.....and hard would be a major understatement.
I don't know what the answer is. I try to hope for the future to be better, but it truly is hard to dance through the storm when you never see any sunshine. I have to laugh at our reality sometimes, because I just don't know what to do anymore and honestly I am sick of pretending everything is great when it isn't. People ask me everyday "How is Brigitte?" My typical response is "Ummm, she's doing ok. Thanks for asking." What I would really like to say goes something like this: Actually, she's a 4 year old little girl who has spent more days in the hospital than she has in her own bed. She is not physically able to eat because her intestines are not working, so an IV in her heart is keeping her alive. Without it she would be dead. Yes, she is home from the hospital and yes, I let her go to school. That is so she can sort of be like a little girl. But most 4 year old little girls aren't eating with a Gtube in their belly or an IV in their heart. They aren't talking to surgeons about possibly needing a colostomy bag. They are running around splashing in puddles or going on playdates when mine only gets to go to PT, OT or Speech. She didn't get to got to the "friend party" at McDonalds today because the germs there could kill her. Instead she spent the day in the house driving her mother crazy because she can't do the things little girls do. She had to have two needles stuck in her legs and blood drawn from her arms twice this week along with having 3 appointments at Children's Hospital. In addition, she now has to be admitted to the hospital next week even when she isn't truly sick because her 7 year old brother has to have brain surgery and the only way she can be taken care of is by a nurse which the State of NH won't let us have because I don't "work"...so she has to be in the hospital when really she doesn't need to be. So, how is Brigitte doing? "Ummm, she's doing ok. Thanks for asking."
Wednesday, October 13, 2010
Here we go again....
I have been blogging alot about Brigitte lately and haven't updated all of you on Sean. Things have been very difficult for him since his surgery. He is having alot of pain in his neck, many headaches and still tingling in his arms and feet.
We have been back to see the neuro-surgeon over the last few weeks quite a few times. He has had a post-op MRI as well. Things just aren't any better than they were before the first surgery. He is waking up multiple times in the middle of the night crying and asking for his valium and oxycodone...this coming from a kid I have to chase around the house to give him medication on a regular basis. He is struggling quite a bit at school as well. I was at North School twice within an hour yesterday. Once to pick up Brenna as she wasn't feeling well, and then again to get Sean who just couldn't make it through the day.
We met with Sean's surgeon again on Monday and have decided that it is time to bite the bullet and go ahead and do a second surgery. This time he will actually have to do a duraplasty, which means his brain will be open and exposed while the doctor sews in a synthetic patch to help brain expand. It may not be as long a surgery since most of the bone has already been removed, but it will be more complex and there is more risk involved anytime the brain is manipulated. I got the call this morning and his surgery will be next Friday, October 22. His Pre-Op is scheduled for the day before.
I am so sick of all of this. Brain surgery twice in 8 weeks for one child and then almost losing another? Is this really happening? I know that it is. I think the thing that is hitting me the hardest is that I feel completely numb. I have shut off so many feelings so that nothing can hurt anymore. It is the oddest feeling in the world.
I am now trying to figure out how to manage having Sean in the hospital and be there 100% for him because he so deserves it, but also manage Brigitte's care....which nobody except me can do. On top of that Jake has his Mity Mite Superbowl the next day on the 23rd. It's just not fair. I cannot be in three places at once and so need to be. Actually, four places because Brenna needs her mommy too. How do you do this? I think there should be an unwritten rule somewhere that if you are blessed enough to be given the gift of an unhealthy child/children that you shouldn't have to worry about all the other stuff and it will just be taken care of! Yes, that was not a misprint, I do feel very blessed to have been given Brigitte and Sean. They are amazing children that have taught me what life is all about. They are MY teachers....not the other way around. I do not pretend to think this is an easy life, and there are many, many people who couldn't handle 1/10th of what we do. BUT, I really do know what matters.
My children are bringing together a community and teaching them what life is all about too. The Londonderry Wildcats,Kim Payson, and so many others have stepped forward and are helping to fill the void and take care of things that Bryan and I can't physically and financially. My children are leaving their footprints on so many people's hearts, it is truly heartwarming.
So although medically things are always in a tailspin in this house, we are getting through it with the love of family, friends and an entire community that is rallying around us. Sunday, Shory's Mexican Roadhouse in Manchester and Salem dontated $1000.00 from a fair share event to help defray some costs associated with the mini-makeover being done at the house. On Monday, Lenny and Lisa Santosuosso of Santosuosso and Son's Construction had a crew out to begin work to separate the master bedroom into two rooms that will now be for Brenna and Brigitte. Brigitte slept in her own room for the very first time in 4 years. It was bittersweet for me, but truly amazing for her. She thinks she is such a big girl now. Yesterday, Derek Wagner of Wagner Electric came out to do some electrical work in the rooms and hallway. He had read about our family and donated all of his time yesterday and completed all the work for free. Bill Mower a local plumber and friend of a friend has been over to evaluate some plumbing work that has been needed got all of his supplies donated and is going to start soon as well. Eric Buck of Pollock Land Planning was also out yesterday and has a grand plan of constructing a new deck and patio area that is safe for Brigitte to finally be able to play outside. I also found out that Steve Babine from Landscape FX will be starting a fall cleanup next week. From what I am hearing there are many other people that have stepped up to help and are committed to getting this project completed. I would urge anyone in the Londonderry area that needs to have anything done in their house, yard, etc. to use these companies. There is something to be said of people who donate their own time and materials to do good for others. I know that none of them want or expect any thanks and are doing what they feel is right in their hearts, but wouldn't it be nice to reward them with patronage for a job well done!!
I am headed to Boston with Brigitte this afternoon for a few appointments. She is seeing her GI doctor and the nutritionist. We are still having major issues with her intestines and has lost about a pound in the last week. Back to Boston again tomorrow for her follow-up with her General Surgeon as well.
I will continue to keep you all posted with news on Sean, Brigitte, and of course the house. Thank you as always for keeping our family in your thoughts and prayers. We feel it and appreciate it.
If you are looking for more information as to how you can help with the makeover, please feel free to contact Kim Payson at bkpayson@hotmail.com My understanding is that the need is for materials right now. If you know anyone who can help, it is much appreciated!!
It takes a village to raise a child~~~~African Proverb
Much Love Always,
We have been back to see the neuro-surgeon over the last few weeks quite a few times. He has had a post-op MRI as well. Things just aren't any better than they were before the first surgery. He is waking up multiple times in the middle of the night crying and asking for his valium and oxycodone...this coming from a kid I have to chase around the house to give him medication on a regular basis. He is struggling quite a bit at school as well. I was at North School twice within an hour yesterday. Once to pick up Brenna as she wasn't feeling well, and then again to get Sean who just couldn't make it through the day.
We met with Sean's surgeon again on Monday and have decided that it is time to bite the bullet and go ahead and do a second surgery. This time he will actually have to do a duraplasty, which means his brain will be open and exposed while the doctor sews in a synthetic patch to help brain expand. It may not be as long a surgery since most of the bone has already been removed, but it will be more complex and there is more risk involved anytime the brain is manipulated. I got the call this morning and his surgery will be next Friday, October 22. His Pre-Op is scheduled for the day before.
I am so sick of all of this. Brain surgery twice in 8 weeks for one child and then almost losing another? Is this really happening? I know that it is. I think the thing that is hitting me the hardest is that I feel completely numb. I have shut off so many feelings so that nothing can hurt anymore. It is the oddest feeling in the world.
I am now trying to figure out how to manage having Sean in the hospital and be there 100% for him because he so deserves it, but also manage Brigitte's care....which nobody except me can do. On top of that Jake has his Mity Mite Superbowl the next day on the 23rd. It's just not fair. I cannot be in three places at once and so need to be. Actually, four places because Brenna needs her mommy too. How do you do this? I think there should be an unwritten rule somewhere that if you are blessed enough to be given the gift of an unhealthy child/children that you shouldn't have to worry about all the other stuff and it will just be taken care of! Yes, that was not a misprint, I do feel very blessed to have been given Brigitte and Sean. They are amazing children that have taught me what life is all about. They are MY teachers....not the other way around. I do not pretend to think this is an easy life, and there are many, many people who couldn't handle 1/10th of what we do. BUT, I really do know what matters.
My children are bringing together a community and teaching them what life is all about too. The Londonderry Wildcats,Kim Payson, and so many others have stepped forward and are helping to fill the void and take care of things that Bryan and I can't physically and financially. My children are leaving their footprints on so many people's hearts, it is truly heartwarming.
So although medically things are always in a tailspin in this house, we are getting through it with the love of family, friends and an entire community that is rallying around us. Sunday, Shory's Mexican Roadhouse in Manchester and Salem dontated $1000.00 from a fair share event to help defray some costs associated with the mini-makeover being done at the house. On Monday, Lenny and Lisa Santosuosso of Santosuosso and Son's Construction had a crew out to begin work to separate the master bedroom into two rooms that will now be for Brenna and Brigitte. Brigitte slept in her own room for the very first time in 4 years. It was bittersweet for me, but truly amazing for her. She thinks she is such a big girl now. Yesterday, Derek Wagner of Wagner Electric came out to do some electrical work in the rooms and hallway. He had read about our family and donated all of his time yesterday and completed all the work for free. Bill Mower a local plumber and friend of a friend has been over to evaluate some plumbing work that has been needed got all of his supplies donated and is going to start soon as well. Eric Buck of Pollock Land Planning was also out yesterday and has a grand plan of constructing a new deck and patio area that is safe for Brigitte to finally be able to play outside. I also found out that Steve Babine from Landscape FX will be starting a fall cleanup next week. From what I am hearing there are many other people that have stepped up to help and are committed to getting this project completed. I would urge anyone in the Londonderry area that needs to have anything done in their house, yard, etc. to use these companies. There is something to be said of people who donate their own time and materials to do good for others. I know that none of them want or expect any thanks and are doing what they feel is right in their hearts, but wouldn't it be nice to reward them with patronage for a job well done!!
I am headed to Boston with Brigitte this afternoon for a few appointments. She is seeing her GI doctor and the nutritionist. We are still having major issues with her intestines and has lost about a pound in the last week. Back to Boston again tomorrow for her follow-up with her General Surgeon as well.
I will continue to keep you all posted with news on Sean, Brigitte, and of course the house. Thank you as always for keeping our family in your thoughts and prayers. We feel it and appreciate it.
If you are looking for more information as to how you can help with the makeover, please feel free to contact Kim Payson at bkpayson@hotmail.com My understanding is that the need is for materials right now. If you know anyone who can help, it is much appreciated!!
It takes a village to raise a child~~~~African Proverb
Much Love Always,
Tuesday, October 5, 2010
Trust....
Is trust a good thing or a bad thing??
I used to believe 100% that it was an amazing thing!! Today, I'm not so sure. Tonight, its bittersweet.
I am in a rocking chair beside Brigitte's bed with a tiny little light so I can see what I am writing. The monitors are all on. Beep, Beep, Beep....the slow, steady hum of her heart. She's stable right now. Lets hope it stays that way.
Today marked day 14 of Brigitte not having a bowel movement. Keep in mind she takes a double dose of adult Miralax, gets an ex-lax square every other day, and also got a few doses of Milk of Mag. We got NOTHING!! Today her doctor decided it was time for a cleanout. Typically this is done inpatient over a few days in the hospital. This time, its being done at home.
This is the email I got today:
We also don’t typically do this at home. But I know you will be with her and know B very well and we are trying to avoid hospitalization more so for B than for your typical patient. Look out for distension, pain, vomiting, in which case we can ‘t do this at home.
I think this makes sense:
(1) Golytely st at 50ml/hour for 2 hours, then 75ml/hour for two hours, and if doing well, go to 100ml/hour. If seems she is barely holding on but not looking worrisome, stay at 75ml/hour. Max is 2L.
(2) chemistry check tomorrow (chem10) to make sure electrolytes are not altered with the treatment
(3) she can have clear fluids by mouth during this time, but best not to have solids or full liquids. She will certainly loose some weight...but that is to be expected.
(3) Hydration 250ml NS three times per week IV.
What does this have to do with trust you say? Well, I am flattered that her doctors trust me so much. It is by far one of the greatest compliments I ever get....aside from those from other parents. I have learned how to do ALL of her care as well, if not better than some of the nurses we have encountered. I know lab values, I can read an EKG, I can deliver meds and suction, I can put her on oxygen, I can give her shots, and infusions. You name it, I can do it. All I have is a HS diploma. I have learned my daughter's conditions and can recite her entire 4 year history much like I can my own social security number.
This is a letter I wrote to a cardiac surgeon in Miami:
Dear Dr. Burke,
My name is Shannon Kaiser. I have a 3year old daughter, Brigitte 8/18/06, who is currently a patient at Children's Hospital Boston. Brigitte's primary diagnosis is Noonan Syndrome, amongst a very long list of other issues. In 11/06 she had pulmonary valve dilation in the cath lab and only had mild relief of the RVOT. On 12/08/06 she had extensive pulmonary valvuloplasty whereby they opened the RVOT and reconstructed the valve with pericardial patches. She also had her main proximal pulmonary artery dilated. After surgery she had a residual gradient with no pulmonary regurgitation in the setting of a very thickened and restrictive right ventricle. This surgery was performed by Dr. Emile Bacha.
Present day she has severe pulmonary regurgitation. The right ventricular function is normal with a moderately dilated right ventricular chamber. She also has an ASD.
Brigitte has had a very extensive medical course. She has MAJOR feeding issues and has had a LADD's procedure for intestinal malrotation 03/07, she has a Gtube 03/07, and has also had a fundoplication 11/07. All of these were performed by Dr. Jay Wilson. As of 09/09 she has had a Broviac CVL placed to initiate TPN due to failure to thrive. Despite being on TPN 3x a week in addition to a very complicated feeding regimen which also consists of 5 60cc bolus' of Enlive Apple Juice daily, and 12 hour continuous overnight feeds of Boost Kids Essentials 1.5 at a rate of 40cc/hr....Brigitte continues to lose weight. In fact, she saw her GI doctor for follow up on 12/18 and was 12.3k and was also seen on 12/30, weighed on the same scale and was down to 11.3k. There is no explanation for this. Her labwork is totally normal. She has been worked up for metabolic issues, thyroid issues, and diabetes. Dr. K(GI) did order a CXR and it was noted that there was change since her previous CXR and was found to have some significant prominence in her pulmonary vasculature.
The reason that I am writing to you is I believe that Brigitte's weight issues are directly being impacted by the insufficiency in her heart. Her respiration's have increased over the last few weeks. Previously she has been in the low-mid 20's and she has been consistent in the mid 30's lately. She is acting pretty normal though. She seems a bit more dusky around her mouth and does get a bit tired after she has been moving around for a bit. She is not losing fluids through diarrhea, nor is she vomiting. Her reflux is completely under control at this point.
I understand that historically children with isolated PS usually do not need intervention until well into their adult years, if at all, but Brigitte has never played by the rules. We have done everything we possibly can to explain away her weight issues. I should add that at this time she doesn't have any oral aversions and will eat by mouth often throughout the day. Every time I consult with another specialist, they all say it "sounds cardiac related." We are on the verge of adding in more TPN to her regimen and I feel as if we are trading one set of problems for another. It doesn't make sense to me to pump her up with nutrition if her heart could be forcing her to burn it all off. Brigitte has enough medical issues, that I don't want to add liver damage to the list due to longterm PN use. My husband and I are well aware of the risks involved in possibly replacing her pulmonary valve and/or closing her ASD. We feel at this time, given the situation, it may be an option that is needed to help take the strain off her heart and allow her to grow.
We have spent well over 300 nights at Children's in the last 3 years. She has had over 25 major surgical procedures, and countless other studies including, triple scopes, MRI's (never a cardiac). She has been worked up for pulmonary lymphangiectasia, celiac disease, hirschprungs disease, amongst other things. She has been severely truamatized and needs to have her ECHO's done typically with Ketamine/Versed. She is extremely fearful of even a simple examination. I share this just so you are aware of how complicated her sweet little life has been, mostly all related to her inability to gain any weight. I also have 3 other children. Brenna is 8, Jake is 7, and Sean is 6. They are all healthy. You may also be interested to know that my father has Hypertrophic Cardiomyopathy and I have Restrictive Cardiomyopathy and Mild Pulmonary Hypertension.
I am hoping that you may be able to help us,or at least give me peace of mind that I have explored every avenue for Brigitte and we are or have done everything possible regarding her cardiac issues. We are very willing to travel to Miami to see you.
Thank you in advance for taking the time to read this. I look forward to hearing from you.
Regards,
Shannon Kaiser
Here is part of his response:
Dear Shannon,
Thanks for the email, I'm sorry to hear Brigitte has had such a difficult course. Your summary is excellent, you may have missed your calling in medicine. I can imagine how traumatic this has been for you and your family. We have three little girls, and it would break my heart to watch one of them go through what you described. If I may, I would like to show your letter to my CICU director, he has a good feel for babies who fail to thrive after heart surgery, and I value his opinion.
Sincerely,
Redmond Burke
While of course it is very flattering to hear things like this from doctors......it puts an unbeliveable amount of pressure on me as well. Kind of like when she was rushed by ambulance a few weeks ago....and I thought she was constipated and dehydrated. Of course as that morning went on, I realized quickly that things were not as simple as I may have thought.....but nonetheless, I should have brought her to the ED that Tuesday night, not Wednesday morning.
I am not blaming myself at all. Looking back, I know I would have done things the same way. But, you can bet your butt the next time she is vomitting up green bile, we will be going in for an eval instead of waiting it out. You just learn to do things differently.
Tonight, I am learning how to do things differently. I am learning how to do a hospital procedure in my house, by myself, with 3 other children who still have to go to football, get homework done, take baths, make lunches for field trips, run to the pharmacy to get medications.......and, maybe eat!! Bryan is working overtime again!!!
It is becoming more and more apparent that her doctors are valuing my need to be at home with my other children, but are also entrusting her life to me as well. That may sound like a no-brainer......but, the pressure is indescribable. At least in the hospital I have nurses checking on her every hour. So if something happens, its not my fault. Tonight, if something happens, it is my fault. How do you live with that for the rest of your life. Again, you try to make quality of life decisions for 3 older children, but put another's at risk....or you make one childs needs more important and sacrifice 3 others. I can't win.
So today just reinforces why I hate Tuesdays. I have a feeling there are going to end up being a few more days of the week I come to despise as well.
“Trust yourself. You know more than you think you do.” Dr. Spock
I used to believe 100% that it was an amazing thing!! Today, I'm not so sure. Tonight, its bittersweet.
I am in a rocking chair beside Brigitte's bed with a tiny little light so I can see what I am writing. The monitors are all on. Beep, Beep, Beep....the slow, steady hum of her heart. She's stable right now. Lets hope it stays that way.
Today marked day 14 of Brigitte not having a bowel movement. Keep in mind she takes a double dose of adult Miralax, gets an ex-lax square every other day, and also got a few doses of Milk of Mag. We got NOTHING!! Today her doctor decided it was time for a cleanout. Typically this is done inpatient over a few days in the hospital. This time, its being done at home.
This is the email I got today:
We also don’t typically do this at home. But I know you will be with her and know B very well and we are trying to avoid hospitalization more so for B than for your typical patient. Look out for distension, pain, vomiting, in which case we can ‘t do this at home.
I think this makes sense:
(1) Golytely st at 50ml/hour for 2 hours, then 75ml/hour for two hours, and if doing well, go to 100ml/hour. If seems she is barely holding on but not looking worrisome, stay at 75ml/hour. Max is 2L.
(2) chemistry check tomorrow (chem10) to make sure electrolytes are not altered with the treatment
(3) she can have clear fluids by mouth during this time, but best not to have solids or full liquids. She will certainly loose some weight...but that is to be expected.
(3) Hydration 250ml NS three times per week IV.
What does this have to do with trust you say? Well, I am flattered that her doctors trust me so much. It is by far one of the greatest compliments I ever get....aside from those from other parents. I have learned how to do ALL of her care as well, if not better than some of the nurses we have encountered. I know lab values, I can read an EKG, I can deliver meds and suction, I can put her on oxygen, I can give her shots, and infusions. You name it, I can do it. All I have is a HS diploma. I have learned my daughter's conditions and can recite her entire 4 year history much like I can my own social security number.
This is a letter I wrote to a cardiac surgeon in Miami:
Dear Dr. Burke,
My name is Shannon Kaiser. I have a 3year old daughter, Brigitte 8/18/06, who is currently a patient at Children's Hospital Boston. Brigitte's primary diagnosis is Noonan Syndrome, amongst a very long list of other issues. In 11/06 she had pulmonary valve dilation in the cath lab and only had mild relief of the RVOT. On 12/08/06 she had extensive pulmonary valvuloplasty whereby they opened the RVOT and reconstructed the valve with pericardial patches. She also had her main proximal pulmonary artery dilated. After surgery she had a residual gradient with no pulmonary regurgitation in the setting of a very thickened and restrictive right ventricle. This surgery was performed by Dr. Emile Bacha.
Present day she has severe pulmonary regurgitation. The right ventricular function is normal with a moderately dilated right ventricular chamber. She also has an ASD.
Brigitte has had a very extensive medical course. She has MAJOR feeding issues and has had a LADD's procedure for intestinal malrotation 03/07, she has a Gtube 03/07, and has also had a fundoplication 11/07. All of these were performed by Dr. Jay Wilson. As of 09/09 she has had a Broviac CVL placed to initiate TPN due to failure to thrive. Despite being on TPN 3x a week in addition to a very complicated feeding regimen which also consists of 5 60cc bolus' of Enlive Apple Juice daily, and 12 hour continuous overnight feeds of Boost Kids Essentials 1.5 at a rate of 40cc/hr....Brigitte continues to lose weight. In fact, she saw her GI doctor for follow up on 12/18 and was 12.3k and was also seen on 12/30, weighed on the same scale and was down to 11.3k. There is no explanation for this. Her labwork is totally normal. She has been worked up for metabolic issues, thyroid issues, and diabetes. Dr. K(GI) did order a CXR and it was noted that there was change since her previous CXR and was found to have some significant prominence in her pulmonary vasculature.
The reason that I am writing to you is I believe that Brigitte's weight issues are directly being impacted by the insufficiency in her heart. Her respiration's have increased over the last few weeks. Previously she has been in the low-mid 20's and she has been consistent in the mid 30's lately. She is acting pretty normal though. She seems a bit more dusky around her mouth and does get a bit tired after she has been moving around for a bit. She is not losing fluids through diarrhea, nor is she vomiting. Her reflux is completely under control at this point.
I understand that historically children with isolated PS usually do not need intervention until well into their adult years, if at all, but Brigitte has never played by the rules. We have done everything we possibly can to explain away her weight issues. I should add that at this time she doesn't have any oral aversions and will eat by mouth often throughout the day. Every time I consult with another specialist, they all say it "sounds cardiac related." We are on the verge of adding in more TPN to her regimen and I feel as if we are trading one set of problems for another. It doesn't make sense to me to pump her up with nutrition if her heart could be forcing her to burn it all off. Brigitte has enough medical issues, that I don't want to add liver damage to the list due to longterm PN use. My husband and I are well aware of the risks involved in possibly replacing her pulmonary valve and/or closing her ASD. We feel at this time, given the situation, it may be an option that is needed to help take the strain off her heart and allow her to grow.
We have spent well over 300 nights at Children's in the last 3 years. She has had over 25 major surgical procedures, and countless other studies including, triple scopes, MRI's (never a cardiac). She has been worked up for pulmonary lymphangiectasia, celiac disease, hirschprungs disease, amongst other things. She has been severely truamatized and needs to have her ECHO's done typically with Ketamine/Versed. She is extremely fearful of even a simple examination. I share this just so you are aware of how complicated her sweet little life has been, mostly all related to her inability to gain any weight. I also have 3 other children. Brenna is 8, Jake is 7, and Sean is 6. They are all healthy. You may also be interested to know that my father has Hypertrophic Cardiomyopathy and I have Restrictive Cardiomyopathy and Mild Pulmonary Hypertension.
I am hoping that you may be able to help us,or at least give me peace of mind that I have explored every avenue for Brigitte and we are or have done everything possible regarding her cardiac issues. We are very willing to travel to Miami to see you.
Thank you in advance for taking the time to read this. I look forward to hearing from you.
Regards,
Shannon Kaiser
Here is part of his response:
Dear Shannon,
Thanks for the email, I'm sorry to hear Brigitte has had such a difficult course. Your summary is excellent, you may have missed your calling in medicine. I can imagine how traumatic this has been for you and your family. We have three little girls, and it would break my heart to watch one of them go through what you described. If I may, I would like to show your letter to my CICU director, he has a good feel for babies who fail to thrive after heart surgery, and I value his opinion.
Sincerely,
Redmond Burke
While of course it is very flattering to hear things like this from doctors......it puts an unbeliveable amount of pressure on me as well. Kind of like when she was rushed by ambulance a few weeks ago....and I thought she was constipated and dehydrated. Of course as that morning went on, I realized quickly that things were not as simple as I may have thought.....but nonetheless, I should have brought her to the ED that Tuesday night, not Wednesday morning.
I am not blaming myself at all. Looking back, I know I would have done things the same way. But, you can bet your butt the next time she is vomitting up green bile, we will be going in for an eval instead of waiting it out. You just learn to do things differently.
Tonight, I am learning how to do things differently. I am learning how to do a hospital procedure in my house, by myself, with 3 other children who still have to go to football, get homework done, take baths, make lunches for field trips, run to the pharmacy to get medications.......and, maybe eat!! Bryan is working overtime again!!!
It is becoming more and more apparent that her doctors are valuing my need to be at home with my other children, but are also entrusting her life to me as well. That may sound like a no-brainer......but, the pressure is indescribable. At least in the hospital I have nurses checking on her every hour. So if something happens, its not my fault. Tonight, if something happens, it is my fault. How do you live with that for the rest of your life. Again, you try to make quality of life decisions for 3 older children, but put another's at risk....or you make one childs needs more important and sacrifice 3 others. I can't win.
So today just reinforces why I hate Tuesdays. I have a feeling there are going to end up being a few more days of the week I come to despise as well.
“Trust yourself. You know more than you think you do.” Dr. Spock
Monday, October 4, 2010
I hate Tuesday's......
Screaming. It happens alot in this house.
Brigitte's anxiety is at an all-time high right now. Its not about to get any better. Every morning when she wakes up, I have to disconnect her TPN and gtube. The procedure for anything that involves her central line has to be sterile. Which makes everything a production. Getting her out of bed in the morning starts with screaming. Can you imagine if you had to start each and everyday already being afraid? Brigitte does.
Tuesday's are usually the worst days of the week. Tomorrow I will wake her up. Disconnect the TPN. Disconnect the GTube. Then I have to scrub the end of her line with alcohol for the length of time it takes me to sing the ABC's in my head. I don't sing to Brigitte, because distraction makes it worse. After I am done with that I have to flush her line with 5cc's of Normal Saline. Then I have to scrub the cap again. This time I sing Itsy Bitsy Spider in my head. Then I can flush her with 5cc's of Heparin. She screams bloody murder the entire time. No word of a lie. She is so sick of people touching her.
We will go downstairs and I have to take her temperature. She hates this. I do it under the arm. I have to track her temp twice a day to watch for any signs and symptoms of a line infection. Then we eat breakfast....or I do, because she doesn't eat. We get Brenna, Jake and Sean on the bus....and then the screaming again. She only can bathe on Tuesdays; just to her waist because she can't get the covering to the central line wet; and we change her dressing on Tuesdays.
I tell her that Pam or Rhonda are coming, and she starts to cry again. She knows if they're coming, its not for a visit. It's for business. I time her getting out of the tub so that as soon as they get here, we change the dressing. Changing the dressing requires a sterile procedure. I have to hold her down and push her face away from her chest. She wears a mask (tries too), I wear a mask, and the nurse wears a mask. Her chest is scrubbed with chlorohexadine and skin prep. Gloves are a must!! This is extremely difficult to do. In the hospital it takes about 4 of us to hold her down. She is so strong. You can imagine how hard it is with only me holding her down. I don't put her on the cardiac monitor anymore during dressing changes because her HR is through the roof and that just scares everyone!! After a few minutes the dressing is changed, we apply a special giant band-aid to keep the line from hanging in her diaper area...a big, big No No!!
After that is done, I get to hold her down again while she gets her IVIG infusion every Tuesday as well. This involves sticking her with a needle in each one of her thighs and keeping her on the couch and still for 1h 48minutes...the time it takes for a blood product to infuse into her little legs, which will hopefully keep her from catching anything during the week....even though she rarely leaves the house anymore. Without the IVIG on board, she would be in the hospital every month for weeks at a time due to common viruses that just give you and I a cold....they are deadly to her.
On a normal day, we would be bolusing her high calorie formula through her gtube every hour on the hour. We give her a break on Tuesday's. I figure it is the least I can do for her.
Normally, we would distract her and talk to her about school and who she is going to play with when she gets there. That can't happen anymore either. That's a story for another day as well.
This may sound pretty boring....it is. Why am I writing about it? Because I hate Tuesdays...and its Monday night. I won't sleep all night, thinking about tomorrow. She won't sleep much because I have to wake her every few hours to give her medicine and change her diaper......before the torture starts for the day.
Do you know how hard it is to sit and listen to your child scream for hours and hours and know that there isn't a damn thing you can do about it. I don't lie to Brigitte. I don't tell her that it doesn't hurt. It hurts like hell. It hurts her and it hurts me. I am supposed to be the one protecting her.....and rationally I am. You can't explain to a developmentally challenged child that holding her down and stabbing her with needles daily is the best thing for her. She just looks into my eyes and screams "Don't touch me"...."Don't touch me."
Those are the saddest, and hardest words any parent wants to hear. I hear them all day long. It breaks my heart. It's not fair.
Brigitte's anxiety is at an all-time high right now. Its not about to get any better. Every morning when she wakes up, I have to disconnect her TPN and gtube. The procedure for anything that involves her central line has to be sterile. Which makes everything a production. Getting her out of bed in the morning starts with screaming. Can you imagine if you had to start each and everyday already being afraid? Brigitte does.
Tuesday's are usually the worst days of the week. Tomorrow I will wake her up. Disconnect the TPN. Disconnect the GTube. Then I have to scrub the end of her line with alcohol for the length of time it takes me to sing the ABC's in my head. I don't sing to Brigitte, because distraction makes it worse. After I am done with that I have to flush her line with 5cc's of Normal Saline. Then I have to scrub the cap again. This time I sing Itsy Bitsy Spider in my head. Then I can flush her with 5cc's of Heparin. She screams bloody murder the entire time. No word of a lie. She is so sick of people touching her.
We will go downstairs and I have to take her temperature. She hates this. I do it under the arm. I have to track her temp twice a day to watch for any signs and symptoms of a line infection. Then we eat breakfast....or I do, because she doesn't eat. We get Brenna, Jake and Sean on the bus....and then the screaming again. She only can bathe on Tuesdays; just to her waist because she can't get the covering to the central line wet; and we change her dressing on Tuesdays.
I tell her that Pam or Rhonda are coming, and she starts to cry again. She knows if they're coming, its not for a visit. It's for business. I time her getting out of the tub so that as soon as they get here, we change the dressing. Changing the dressing requires a sterile procedure. I have to hold her down and push her face away from her chest. She wears a mask (tries too), I wear a mask, and the nurse wears a mask. Her chest is scrubbed with chlorohexadine and skin prep. Gloves are a must!! This is extremely difficult to do. In the hospital it takes about 4 of us to hold her down. She is so strong. You can imagine how hard it is with only me holding her down. I don't put her on the cardiac monitor anymore during dressing changes because her HR is through the roof and that just scares everyone!! After a few minutes the dressing is changed, we apply a special giant band-aid to keep the line from hanging in her diaper area...a big, big No No!!
After that is done, I get to hold her down again while she gets her IVIG infusion every Tuesday as well. This involves sticking her with a needle in each one of her thighs and keeping her on the couch and still for 1h 48minutes...the time it takes for a blood product to infuse into her little legs, which will hopefully keep her from catching anything during the week....even though she rarely leaves the house anymore. Without the IVIG on board, she would be in the hospital every month for weeks at a time due to common viruses that just give you and I a cold....they are deadly to her.
On a normal day, we would be bolusing her high calorie formula through her gtube every hour on the hour. We give her a break on Tuesday's. I figure it is the least I can do for her.
Normally, we would distract her and talk to her about school and who she is going to play with when she gets there. That can't happen anymore either. That's a story for another day as well.
This may sound pretty boring....it is. Why am I writing about it? Because I hate Tuesdays...and its Monday night. I won't sleep all night, thinking about tomorrow. She won't sleep much because I have to wake her every few hours to give her medicine and change her diaper......before the torture starts for the day.
Do you know how hard it is to sit and listen to your child scream for hours and hours and know that there isn't a damn thing you can do about it. I don't lie to Brigitte. I don't tell her that it doesn't hurt. It hurts like hell. It hurts her and it hurts me. I am supposed to be the one protecting her.....and rationally I am. You can't explain to a developmentally challenged child that holding her down and stabbing her with needles daily is the best thing for her. She just looks into my eyes and screams "Don't touch me"...."Don't touch me."
Those are the saddest, and hardest words any parent wants to hear. I hear them all day long. It breaks my heart. It's not fair.
Friday, October 1, 2010
Years 2 and 3
Brigitte's second and third year brought much of the same as the first year. She was admitted countless times for mostly respiratory infections and failure to thrive. We spent countless days heading in for clinic appointments and testing. The second and third years brought many, many diagnosis for Brigitte.
There were many more surgeries and procedures done to her little body. Her current diagnosis list is long!!
Noonan Syndrome
Mild Cerebral Palsy
Autism
Failure to Thrive
Type 1 Laryngeal Cleft
Pulmonary Stenosis
Hypertrophic Cardiomyopathy
Constipation
Hypogammaglobulinemia (supressed immune system)
Hypotonia
Lung Disease
Asthma
Gastroparesis
Small Bowel Obstruction
Poor Gastro-Motility
Global Developmenatal Delays
and the list goes on........
Her big surgeries of those two years included an attempt to repair a Type 1 laryngeal cleft, which is basically a hole in her larynx that allows food/liquids to flow into the trachea vs. the esophagus. This was to be a very complicated surgery. Brigitte had other plans. She had a laryngospasm on the OR table and the case was subsequently cancelled. We can't find a surgeon willing to touch it now....so she still has a cleft. We have learned along the way, the Brigitte does things in her own way. As much as this drives me crazy and makes for some very scary situations.....it also shows me that she is her own little hot mess!! She dances to her own beat and will never be ordinary!!
The other big surgery was another cardiac catheterization. Brigitte still gets very tired easily. Her lips turn blue and she sometimes has trouble breathing. Add in to that the inability to gain any weight, and it was time for another cath. It's funny when you get to a point where it's "just a cath", no big deal!! She did well for the procedure, had a little trouble with anesthesia and regulating her temperature, but otherwise did ok. We did get some very alarming news afterwards. Brigitte is now missing her entire right coronary artery and all the vasculature that goes with it. The theory is that she must have had a stroke at some point and the artery clotted off. Her left side has made up for the right but this puts increased pressure on her heart.
The problem with having alot of problems is they all make the body work a bit harder, which in turn means the body burns more calories than it should. Brigitte also has ADD so she is on the go non-stop! For those of you who know her, you know what I mean. She does not stop talking all day long! The decision was finally made after multiple hospitalizations and the lack of really good answers or solutions to place a central line in Brigitte and start TPN nutrition. She got her first line in September of 2009. In six weeks, Brigitte gained almost 2 kilos (almost 4 pounds). It was our miracle. Then the first line infection hit. She was a sick little girl and we spent another 14 days inpatient trying to clear infections from her line. It didn't work, and she was emergently sent to the OR to have the line removed. She lost all the weight we worked so hard for and was worse off than when we began. We came home for a few weeks, and then went back in December to have a second CVL placed. This time she came home on TPN 4 days a week and 3 days of IV hydration. The next line infection struck in February. This time it landed her in ICU. She was septic and not responding to antibiotics to treat the line infection. Another emergent trip to the OR to have the line removed. No more lines for Brigitte. She is immunodeficient, so bacteria just proliferates in her system once it gets there.
All of this back and forth is difficult on everyone. If you go on medical message boards people often refer to their healthy kids as UA (unaffected). This is so far from the truth and it is one thing that gets my blood boiling. My other three children are anything but unaffected. They may not go through the physical pain that Brigitte (and now Sean) go through, but the emotional toll is just as devastating...if not more so. There are many days that I feel as if I am sacrificing the lives of 3 other children to save the life of one. Brigitte has spent 373 nights at Children's Hospital Boston. She is only 4 years old. That means I have not been with my other 3 children for 373 days. Thats alot to miss out on. For me and for them. I don't doubt that I am doing what I have to do for Brigitte. I am not strong. I am not brave. There is no choice. She is my daughter. End of story. Having said that, each and every time Brigitte is sick, I leave three kids home without their mom. My kids ask me everyday "Mom, your going to get us off the bus, right?" Everyday I answer "Yes." BUT....there have been so many days, when that just isn't true. They come home and someone is getting them off the bus and they will spend days sleeping over someones house, or having multiple people stay overnight with them here at home. Not only that, but last year was almost unbearable. Hospitals had severely restricted their visiting policy to parents/guardians and grandparents ONLY!! No children under 18 were allowed in due to H1N1. My kids get extremely nervous when they can't see Brigitte. In their mind if they see her and she is on the floor not the unit, then they know she is sick, but she'll be fixed and will come home. When they can't see her for themselves, all hell breaks loose. They really suffer. Tremendously. My kids know what all of her diagnosis mean. They know how to flush a gtube and give her meds. The biggest thing they know is compassion. There has been so much good that has come from Brigitte and her life. It makes my heart smile everytime I see my kids showing empathy and understanding to children with special needs. So with the bad, there certainly comes alot of good.
I hope that this little history lesson has given you some insight into why we fight so hard "Saving Brigitte." I do have to add that these are just some of the highlights. She has so many other issues, has had so many other surgeries. If I tried to list them all, you would be reading FOREVER. I think you get the point. Yes, of course we have suffered alot of heartache. She has endured more than most. My next post will be of all she has accomplished. Thats quite a list as well considering half her doctors told us she isn't going to live....and the other half tell us "She won't do this, she won't do that".....and she has, and she will!!!
There were many more surgeries and procedures done to her little body. Her current diagnosis list is long!!
Noonan Syndrome
Mild Cerebral Palsy
Autism
Failure to Thrive
Type 1 Laryngeal Cleft
Pulmonary Stenosis
Hypertrophic Cardiomyopathy
Constipation
Hypogammaglobulinemia (supressed immune system)
Hypotonia
Lung Disease
Asthma
Gastroparesis
Small Bowel Obstruction
Poor Gastro-Motility
Global Developmenatal Delays
and the list goes on........
Her big surgeries of those two years included an attempt to repair a Type 1 laryngeal cleft, which is basically a hole in her larynx that allows food/liquids to flow into the trachea vs. the esophagus. This was to be a very complicated surgery. Brigitte had other plans. She had a laryngospasm on the OR table and the case was subsequently cancelled. We can't find a surgeon willing to touch it now....so she still has a cleft. We have learned along the way, the Brigitte does things in her own way. As much as this drives me crazy and makes for some very scary situations.....it also shows me that she is her own little hot mess!! She dances to her own beat and will never be ordinary!!
The other big surgery was another cardiac catheterization. Brigitte still gets very tired easily. Her lips turn blue and she sometimes has trouble breathing. Add in to that the inability to gain any weight, and it was time for another cath. It's funny when you get to a point where it's "just a cath", no big deal!! She did well for the procedure, had a little trouble with anesthesia and regulating her temperature, but otherwise did ok. We did get some very alarming news afterwards. Brigitte is now missing her entire right coronary artery and all the vasculature that goes with it. The theory is that she must have had a stroke at some point and the artery clotted off. Her left side has made up for the right but this puts increased pressure on her heart.
The problem with having alot of problems is they all make the body work a bit harder, which in turn means the body burns more calories than it should. Brigitte also has ADD so she is on the go non-stop! For those of you who know her, you know what I mean. She does not stop talking all day long!
All of this back and forth is difficult on everyone. If you go on medical message boards people often refer to their healthy kids as UA (unaffected). This is so far from the truth and it is one thing that gets my blood boiling. My other three children are anything but unaffected. They may not go through the physical pain that Brigitte (and now Sean) go through, but the emotional toll is just as devastating...if not more so. There are many days that I feel as if I am sacrificing the lives of 3 other children to save the life of one. Brigitte has spent 373 nights at Children's Hospital Boston. She is only 4 years old. That means I have not been with my other 3 children for 373 days. Thats alot to miss out on. For me and for them. I don't doubt that I am doing what I have to do for Brigitte. I am not strong. I am not brave. There is no choice. She is my daughter. End of story. Having said that, each and every time Brigitte is sick, I leave three kids home without their mom. My kids ask me everyday "Mom, your going to get us off the bus, right?" Everyday I answer "Yes." BUT....there have been so many days, when that just isn't true. They come home and someone is getting them off the bus and they will spend days sleeping over someones house, or having multiple people stay overnight with them here at home. Not only that, but last year was almost unbearable. Hospitals had severely restricted their visiting policy to parents/guardians and grandparents ONLY!! No children under 18 were allowed in due to H1N1. My kids get extremely nervous when they can't see Brigitte. In their mind if they see her and she is on the floor not the unit, then they know she is sick, but she'll be fixed and will come home. When they can't see her for themselves, all hell breaks loose. They really suffer. Tremendously. My kids know what all of her diagnosis mean. They know how to flush a gtube and give her meds. The biggest thing they know is compassion. There has been so much good that has come from Brigitte and her life. It makes my heart smile everytime I see my kids showing empathy and understanding to children with special needs. So with the bad, there certainly comes alot of good.
I hope that this little history lesson has given you some insight into why we fight so hard "Saving Brigitte." I do have to add that these are just some of the highlights. She has so many other issues, has had so many other surgeries. If I tried to list them all, you would be reading FOREVER. I think you get the point. Yes, of course we have suffered alot of heartache. She has endured more than most. My next post will be of all she has accomplished. Thats quite a list as well considering half her doctors told us she isn't going to live....and the other half tell us "She won't do this, she won't do that".....and she has, and she will!!!
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