Many parents that have gone through something like we have (or worse) will tell you they celebrate their child's heart surgery anniversary. I never understood why until this week. It just hit me. 5 months ago today, I was sitting in the CVICU at the Levine's Children's Hospital watching all the monitors tick away. Madelynn had come out of surgery about 4 to 5 hours earlier. I was getting over my state of shock and trying to educate myself about everything that was going on with her. It was easier to educate myself than it was to feel anything, and safer. I think the only way I made it through was to ask questions.
The day before when we found out I had so many calls to make. I knew it would get more real the more I explained it so I called my job first. I know that sounds cold but I knew I could only get through it one time without losing my mind and if I told my job first I would have to worry about anyone calling over and over again. Then I could just be with family and worry about my two precious gems at home.
I wrote letters this week to the CVICU staff and thanked the stunning nurses. They truly are a special group of people I don't know many people that could do what they do. I also thanked the incredible staff at the pediatricians office. They have been very concerned about Madelynn and her recovery. Anytime I called they just jumped to help us and fit us in whenever necessary. They prayed when Madelynn was struggling and cheered when she reached certain goals in her recovery. They have been great.
Although I have not really met everyone yet, the other parents with the Levine Cardiac Kids are just like us. This is the group that has helped me the most and they don't even know it. While Madelynn was recovering from surgery Phil and I went down to our first meeting (in November). They were very gracious and very concerned, very inviting. We were unable to go to the Christmas event because Madelynn was back in the hospital. It was all I could do to keep it together for Kaitlynn's birthday. Lucky for me I was all ready for Kaitlynn's birthday (presents wrapped and all).
During the days and weeks that passed I thought I was going to lose it. Madelynn was still having trouble eating, she was losing weight or just barely maintaining the weight she had. In early January I had a very unhappy visit with one of Madelynn's doctors. No one was listening to me. I thought I was at an end and did not know where to turn. I went to the LCK meeting. That night the guest speaker was a therapist who was talking about the stresses of have a child with special needs medical or otherwise.
I had made arrangements for someone to watch the kids. Phil had to work so I went by myself. I actually learned a lot and felt a little better when I left the meeting. I am not sure what came over me but as I made my 45 min drive home I just started crying and could not stop. I almost had to pull over. This was the first time I REALLY cried ( 2 months later). I actually felt better by the time I was getting closer to home. I had to get it together because the last time Kaitlynn and Jackson saw me cry was the day the urgent care doctor called and told us something was wrong with Madelynn's heart.
This was not a call I was expecting. As the Doctor was explaining I listened and tears just streamed down my face. The kids were stunned and scared that mommy was crying. Jackson was so worried asked me what was wrong. I couldn't and promised myself a long time ago I would never lie to him. S0 I told him that Madelynn's heart was not shaped like his and that we needed to go see a special doctor to see if he could fix it. Little did I know what that one sentence entailed.
Since that night driving home, I found a new burst of energy and a new voice for Madelynn. I finally got the doctor's HEARING me. I found help with a nutritionist who is great and we love the physical therapist. They are both thrilled at her progress. The last time we saw the cardiologist he was elated. Madelynn still has a long way to go but she is definitely on a road I have not been on with her before and I am very much enjoying the ride.
We have a weight check tomorrow. Hopefully we can continue down the road we are on.
TTFN
Monday, March 30, 2009
Sunday, March 29, 2009
The Cat in the Hat
At Katie and Jack's pre-school they celebrate some of the REALLY important things. Recently, the celebrated Elmo's birthday and everyone was allowed to bring their Elmo from home. They also celebrated Dr. Seuss' birthday. It was a whole week celebration and the kids took in there favorite Dr. Seuss book. Katie had the opportunity to make her own Cat in the Hat. I thought I would share her artistry.
TTFN
Saturday, March 28, 2009
North Carolina
One of the things I love most about North Carolina is the Spring time. Before I had children, I spent a lot more time out in the back yard. I hope as the kids age I will be able to spend more time out in my yard again. All of these photos were taken on my property. I actually planned it so I have something blooming in my yard year round. Not to mention Phil and I planted them all. There is actually a shrub that will only bloom these beautiful red flowers in the winter time. Just thought I would share.
TTFN
Tuesday, March 24, 2009
WHEW!!!!!!!!!
There are very few days I have ever wished this on but I am so glad today is just about over. My day started at 5:30am when Phil woke Maddie as he was getting ready for work. I fed her and then Jack woke up and shortly after, Katie was awake. I dropped Katie and Jack off at school and my day just picked up speed from there.
Maddie had her therapy and it went REALLY well. The therapist was really please that Maddie had worked so hard. Maddie work so hard in fact less that 5 minutes after therapy Maddie fell asleep on the floor. I made a few calls. One in which was to the Women's Institute asking for all of my medical records from my ultrasound when I was carrying Maddie. I am going to turn them over to the Pediatric Cardiologist to see if they will help in the research of heart babies like Maddie.
There is a part of me that thinks the ultrasound tech new something was wrong with Maddie's heart and she was over ruled but the doctor. The tech spent a lot of time on Maddie's heart during the ultrasound. I questioned the tech. But something tells me she saw something. I want to turn the info over to the heart research so that maybe it can help the next heart baby.
We then had to get ready to leave. We went to the pediatrician. Maddie had a weight check 14lbs 2oz and she got probably her last RSV shot. Then we had to trek some days what seems like cross country to the pulmonologist. This was a very frustrating visit due to what seems like laziness on the part of the nurse. I knew we were going to this visit and that the Dr would want an x ray of Maddie's chest. Trying to be the pro active parent, last Thursday I called the Dr.'s office asking for a referral to get the x ray done at the Urgent Care by my home. Since it is through the same Hospital System the pulmonologist can see all of Maddie's x rays from the first one showing the Corartation to the one taken today.
The nurse incorrectly gave the info to the Dr and he said no need. When we got to the appointment (36 miles one way) the Dr wanted the x ray. I almost exploded. It was almost time for Maddie to eat, Katie and Jack would need to eat dinner soon and it was almost rush hour traffic. The radiology department we had to go to was for the whole hospital. After losing my cool back in the pulmonologist office I told them it was all through the same hospital system make it so I can go home and get the x ray done near the house since they didn't feel it necessary to do what I asked 6 days ago.
By the time I got home from the other hospital, getting the x ray, picking up Katie and Jack it was almost time for Maddie's breathing treatment. Needles to say about 8pm I sat down to eat. The Dr did call me back about 5:30pm and apologize for all the chaos created and told me he would call me again this evening to tell what he thought of the x ray. When he called the second time he said things are looking really good. He said we could stop one of the meds but continue with the maintenance drug. This ultimately was good news.
So, here is the day in a nutshell......I travelled over 100 miles today for Maddie's medical needs, lost my cool with a nurse for laziness.......and oh yeah I almost forgot the best part of my day......I discovered that I accidentally sewed my bedspread to my electric blanket (yes read that last line again).....A few days ago I sewed a hole in a patchwork quilt that had accidentally been torn by the kids. I figured the best way to fix it was to lay it out on the bed and repair it. However, I did not realize that I went too far with the needle and now my electric blanket is attached to my quilt. At least now I don't have to worry about Phil taking too many covers when he rolls over.
It made me laugh anyway.......Have a good Hump day tomorrow!!!!!
TTFN
Maddie had her therapy and it went REALLY well. The therapist was really please that Maddie had worked so hard. Maddie work so hard in fact less that 5 minutes after therapy Maddie fell asleep on the floor. I made a few calls. One in which was to the Women's Institute asking for all of my medical records from my ultrasound when I was carrying Maddie. I am going to turn them over to the Pediatric Cardiologist to see if they will help in the research of heart babies like Maddie.
There is a part of me that thinks the ultrasound tech new something was wrong with Maddie's heart and she was over ruled but the doctor. The tech spent a lot of time on Maddie's heart during the ultrasound. I questioned the tech. But something tells me she saw something. I want to turn the info over to the heart research so that maybe it can help the next heart baby.
We then had to get ready to leave. We went to the pediatrician. Maddie had a weight check 14lbs 2oz and she got probably her last RSV shot. Then we had to trek some days what seems like cross country to the pulmonologist. This was a very frustrating visit due to what seems like laziness on the part of the nurse. I knew we were going to this visit and that the Dr would want an x ray of Maddie's chest. Trying to be the pro active parent, last Thursday I called the Dr.'s office asking for a referral to get the x ray done at the Urgent Care by my home. Since it is through the same Hospital System the pulmonologist can see all of Maddie's x rays from the first one showing the Corartation to the one taken today.
The nurse incorrectly gave the info to the Dr and he said no need. When we got to the appointment (36 miles one way) the Dr wanted the x ray. I almost exploded. It was almost time for Maddie to eat, Katie and Jack would need to eat dinner soon and it was almost rush hour traffic. The radiology department we had to go to was for the whole hospital. After losing my cool back in the pulmonologist office I told them it was all through the same hospital system make it so I can go home and get the x ray done near the house since they didn't feel it necessary to do what I asked 6 days ago.
By the time I got home from the other hospital, getting the x ray, picking up Katie and Jack it was almost time for Maddie's breathing treatment. Needles to say about 8pm I sat down to eat. The Dr did call me back about 5:30pm and apologize for all the chaos created and told me he would call me again this evening to tell what he thought of the x ray. When he called the second time he said things are looking really good. He said we could stop one of the meds but continue with the maintenance drug. This ultimately was good news.
So, here is the day in a nutshell......I travelled over 100 miles today for Maddie's medical needs, lost my cool with a nurse for laziness.......and oh yeah I almost forgot the best part of my day......I discovered that I accidentally sewed my bedspread to my electric blanket (yes read that last line again).....A few days ago I sewed a hole in a patchwork quilt that had accidentally been torn by the kids. I figured the best way to fix it was to lay it out on the bed and repair it. However, I did not realize that I went too far with the needle and now my electric blanket is attached to my quilt. At least now I don't have to worry about Phil taking too many covers when he rolls over.
It made me laugh anyway.......Have a good Hump day tomorrow!!!!!
TTFN
Saturday, March 21, 2009
Pretty close.....
Whenever Jack first gets his hair cut I always said he looks like Dennis the Menace. The teachers at his school always laugh because they agree. However I think some days they think he is more like Dennis the Menace because of how creative he is when he causes trouble. I'll never know because they will never tell.
TTFN
Friday, March 20, 2009
What to do.....
In the March 11th post I talked a lot about the LCK and CHD's and what we have been through. I received an email in the last few days about Senator Dick Durbin who presented legislation about CHD's that I think would be very helpful and should have been done much sooner. It is called the "Congenital Heart Futures Act". Basically they want to set up a national registry for CHD and disease to help in the research and care of heart patients. It will also issue grants for research and funding.
When Phil and I were informed of Madelynn's heart condition the very first thing the cardiologist told me was, "This is not your fault" they do not know what causes heart defects of any kind in children. My first thought was in the information age we live in today THEY DON'T KNOW????? WHY NOT????
What parent do you know in their right mind would allow their child to be used in a test case to see what works. They are not lab rats, they are children. So this looks like a best case scenerio. I didn't understand until later why a few hours after Madelynn was diagnosed there were 20 people in her hospital room. In preping her for surgery and the very extensive echo they did, it was the best way for the doctor's to learn. Not to mention the fact Madelynn has a rare build to her heart like no one else.
Madelynn's CHD is very common and most of the time it can be repaired by going through the armpit. It is so common in fact that there are three main kinds that are already drawn on a peice of paper, the doctor just checks one off to put in the chart. Madelynn had to have open heart surgery where her rib cage was wired back together until the bone fuses over it. The surgeon had to draw what her heart looks like so that if another doctor looked in her chart they would know her heart is different. Her heart can still function normally and they see no reason why her life can not be lived to the fullest.
One other thing I learned is that there are now more adults living with CHD's than children. That is a superb fact because it says that the pediactric heart doctors have learned more than ever before and children are living longer with these defects or the repairs are working as they should.
Here is the kitch in the git along (as a friend of mine always says) the doctors who only went to school for adult heart patients are not educated in the care of some of the CHD's. So you now have a growing number of adults needing a heart doctor who does not know how to care for them. One of the ways our local hospital does it is that as an adult you see a pediatric and adult heart doctor in the same visit. They see patients together so that eventally the pediatric heart doctors just see the kids and the adult heart doctor can take over as they age. In some cases it means the adult heart doctors are going back to school.
This registry is a great idea. It is still governed with HIPPA laws and an oversite comittee. I am not sure why this senator chose to do this, maybe a personal experience. It doesn't matter, if you go out to the Congenital Heart Information Network (see link to the right) there is a link to the the act and how to contact your senate and house leaders. I have never been one to push my political views on anyone but it would be a great thing if you took the time to contact your congressman/woman and shared your support.
I will be writing our house and senate leaders and sharing our story to help get this passed. It is something I can do for a family in the future so that maybe they do not have to go through what we did or something worse.
I am finished with my soap box. Hope you all have a Great Weekend!! We are to have great spring weather.
TTFN
When Phil and I were informed of Madelynn's heart condition the very first thing the cardiologist told me was, "This is not your fault" they do not know what causes heart defects of any kind in children. My first thought was in the information age we live in today THEY DON'T KNOW????? WHY NOT????
What parent do you know in their right mind would allow their child to be used in a test case to see what works. They are not lab rats, they are children. So this looks like a best case scenerio. I didn't understand until later why a few hours after Madelynn was diagnosed there were 20 people in her hospital room. In preping her for surgery and the very extensive echo they did, it was the best way for the doctor's to learn. Not to mention the fact Madelynn has a rare build to her heart like no one else.
Madelynn's CHD is very common and most of the time it can be repaired by going through the armpit. It is so common in fact that there are three main kinds that are already drawn on a peice of paper, the doctor just checks one off to put in the chart. Madelynn had to have open heart surgery where her rib cage was wired back together until the bone fuses over it. The surgeon had to draw what her heart looks like so that if another doctor looked in her chart they would know her heart is different. Her heart can still function normally and they see no reason why her life can not be lived to the fullest.
One other thing I learned is that there are now more adults living with CHD's than children. That is a superb fact because it says that the pediactric heart doctors have learned more than ever before and children are living longer with these defects or the repairs are working as they should.
Here is the kitch in the git along (as a friend of mine always says) the doctors who only went to school for adult heart patients are not educated in the care of some of the CHD's. So you now have a growing number of adults needing a heart doctor who does not know how to care for them. One of the ways our local hospital does it is that as an adult you see a pediatric and adult heart doctor in the same visit. They see patients together so that eventally the pediatric heart doctors just see the kids and the adult heart doctor can take over as they age. In some cases it means the adult heart doctors are going back to school.
This registry is a great idea. It is still governed with HIPPA laws and an oversite comittee. I am not sure why this senator chose to do this, maybe a personal experience. It doesn't matter, if you go out to the Congenital Heart Information Network (see link to the right) there is a link to the the act and how to contact your senate and house leaders. I have never been one to push my political views on anyone but it would be a great thing if you took the time to contact your congressman/woman and shared your support.
I will be writing our house and senate leaders and sharing our story to help get this passed. It is something I can do for a family in the future so that maybe they do not have to go through what we did or something worse.
I am finished with my soap box. Hope you all have a Great Weekend!! We are to have great spring weather.
TTFN
Monday, March 16, 2009
Sunday Funnies
Sunday afternoon was filled with interesting things and it took me most of the evening to stop laughing. To start I learned a phrase called "crop-dusting". We were walking through Lowes and we passed a couple. One of them had the worst gas. We walked right through the cloud of smell. Phil says I hate running into crop dusters. The worst part was we forgot something and had to go back the couples way. Phil looks at me and says Are you really going to make me walk through that funk again. I feel sorry for which ever member of that couple that was not crop dusting.
So then we are at home an hour or so later, I usually spend most of Sunday afternoon doing laundry so I am up and down the stairs more times that I care to know. I was upstairs putting clothes away and left the laundry baskets in the hall as I emptied them. This was logical to me so that when I went back down stairs to get more laundry I could grab them. That was until I heard, "HOLD ON TIGHT!!!". I went runnung to the hall, Phil is yelling "NO" from the bedroom. I found Jack in the laundry basket gripping the sides waiting for Katie to give him a big shove. All I can say is that I will NEVER leave the laundry baskets in the hall EVER again.
An hour or so later I am walking up the stairs and I hear, "Peanut what the ......(gasp for air)." Phil was changing Maddie's diaper and was not prepared for what he found inside. I had to take that diaper straight outside. Do not pass go do not collect $100.
There are a lot of times when Katie and Jack are playing I stand off in the distance and just listen. Sometimes I hear them scolding each other with the comments Phil and I make to them. Other times it is really funny little conversations.
Needless to say, being a fly an the wall at my house yesterday would have probably left you laughing. I am just glad that the five days of rain has ended and I will be able to let them go outside and play instead of being so creative inside.
TTFN
So then we are at home an hour or so later, I usually spend most of Sunday afternoon doing laundry so I am up and down the stairs more times that I care to know. I was upstairs putting clothes away and left the laundry baskets in the hall as I emptied them. This was logical to me so that when I went back down stairs to get more laundry I could grab them. That was until I heard, "HOLD ON TIGHT!!!". I went runnung to the hall, Phil is yelling "NO" from the bedroom. I found Jack in the laundry basket gripping the sides waiting for Katie to give him a big shove. All I can say is that I will NEVER leave the laundry baskets in the hall EVER again.
An hour or so later I am walking up the stairs and I hear, "Peanut what the ......(gasp for air)." Phil was changing Maddie's diaper and was not prepared for what he found inside. I had to take that diaper straight outside. Do not pass go do not collect $100.
There are a lot of times when Katie and Jack are playing I stand off in the distance and just listen. Sometimes I hear them scolding each other with the comments Phil and I make to them. Other times it is really funny little conversations.
Needless to say, being a fly an the wall at my house yesterday would have probably left you laughing. I am just glad that the five days of rain has ended and I will be able to let them go outside and play instead of being so creative inside.
TTFN
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