Lynlee had her scheduled appointment at Children's Yesterday. In general, I was not looking forward to it. If felt like we had just got home from there, and our first appointment wasn't even until 2pm.
We got there early to get her blood work done then headed to her G-Tube appointment. She does need a bigger G-Tube since she has grown so much. They didn't have them in stock so they are just mailing it to me this week. This will be my first time switching it out at home. I've done it once in the hospital.
Our second appointment in the day was Genetics. Lynlee's ammonia was 35 yesterday. I was so pleased with that!! They are extremely happy with Lynlee, her levels, and her development. They should be calling probably tomorrow with any formula change they might make. The doctor also said he would see us in 3 months.. My exact words were, Umm NO!! He then laughed and said how about 2? That will work since we went almost 7 weeks this time. I know the longer apart the appointment are the more in control they think she is, but I'm still so afraid she will get a growth spurt or something. We are going to do every other week ammonia's, and continue to do weekly weights.
We are heading to the beach next week for Lynlee's first vacation. I've been on line and found the closest hospitals and know where to go if something would happen. I also called the hospital to make sure they can check ammonia, etc.
So if nothing exciting happens this week I'll blog when we get back from the beach and post lots of pictures :)
Tuesday, September 21, 2010
Sunday, September 19, 2010
Lynlee's Ride
Lynlee's Ride for a Cure for Cycle!
We ride for Lynlee! Why? Because she is amazing. She is strong, smart, and beautiful! She is a fighter!
In the 11 short months Lynlee has been here with us she has went through 4 surgery's. That is 4 too many to us. She has been inhabited 6 times in the past 11 months. 4 of those times were for the surgery.
We ride for a cure because we have faith there will be a cure!
We ride for your future children. A UCD child is born everyday! The next one could be yours!
We ride for AWARENESS!! The best hospital (or some say) in our state didn't know what was wrong with Lynlee!
We are asking you to ride with us! Not to be pushy, but we would ride for you and your children!
If anyone has $10 extra dollars, $5 extra or just a few dollars it would be appreciated.
Join our team!! Help us find a cure!
http://curethecycle.dojiggy.com/lynleesteam
We ride for Lynlee! Why? Because she is amazing. She is strong, smart, and beautiful! She is a fighter!
In the 11 short months Lynlee has been here with us she has went through 4 surgery's. That is 4 too many to us. She has been inhabited 6 times in the past 11 months. 4 of those times were for the surgery.
We ride for a cure because we have faith there will be a cure!
We ride for your future children. A UCD child is born everyday! The next one could be yours!
We ride for AWARENESS!! The best hospital (or some say) in our state didn't know what was wrong with Lynlee!
We are asking you to ride with us! Not to be pushy, but we would ride for you and your children!
If anyone has $10 extra dollars, $5 extra or just a few dollars it would be appreciated.
Join our team!! Help us find a cure!
http://curethecycle.dojiggy.com/lynleesteam
Tuesday, September 14, 2010
Port #2
Yesterday Lynlee had her dye study done on her port. We thought it would be quick and simple. I had prepared myself that the port had probably became loose and that she would have to come back for surgery. I try to prepare myself for the worse so if it doesn't happen then I'm okay.
Well our day went a little something like this. By 1:10pm Lynlee was taken away to do the dye study. They told me it would take them 30 minutes at the latest and they would come get us to see her. As she walked down the hallway with them, she was talking away. However, I walked the opposite way with big tears in my eyes. I wanted to go with her. I was afraid she would be scared during the procedure.
About 25-30 minutes went by and the Nurse Practitioner had came out. She said that she Lynlee's port had "malfunctioned" and the catheter was just floating around in her body. That they had to do emergency surgery NOW before any damage was done. I was really in shock. I hadn't prepared myself for this kind of worse. Everything after that happened so fast. The surgeon came out talked about the procedure, I was very adamant about the fact that another port HAD to be put back in. I also had to make sure they had called genetics (which they hadn't) because Lynlee's disorder prevents us from just having day surgery.
By 2:15 Lynlee was already in surgery. She had ate at 10am, but they thought that had given her enough time and they were not taking any chances of the catheter moving. She was in surgery for around 3 hours. They had to "fish" out the catheter which they said was the hardest part, then put the new port in. She was out of surgery by 5:30, and by 6:15pm we had her on her feeds. She was in recovery and most patients were trying to wake up. Not Lynlee she was awake, and hungry, and wanted up.
Shortly after that we were taken to our room. At 8pm they were taking an ammonia. I had again prepared myself that the level might be a little elevated. After all, she had been without her feed including meds for 8 hours, and had just gone through a 3 hour surgery. The level came back at 27. I was thrilled. I knew everything was going to be okay after that point. Her midnight ammonia was 34, and her 4am was 22.. Whew such a relief.
Lynlee was amazing through it all. From the time she left recovery she was up and ready to go until 10:30 last night. She wanted out of her bed, she wanted to play. I've never seen anything like it!
We did find out afterward that they were sending Lynlee's old port back to the company to see if they could research and see why it had came apart.
We came home this afternoon and Lynlee is doing wonderful. She had a nasty cold that is going around and that is our biggest issue at the moment, not the fact that she just had surgery. You wouldn't even know it. She is still rolling down the hallway like always.
Thank you to everyone that prayed for us, that kept us in your thoughts. I don't know how we could make it without our friends and family!
Well our day went a little something like this. By 1:10pm Lynlee was taken away to do the dye study. They told me it would take them 30 minutes at the latest and they would come get us to see her. As she walked down the hallway with them, she was talking away. However, I walked the opposite way with big tears in my eyes. I wanted to go with her. I was afraid she would be scared during the procedure.
About 25-30 minutes went by and the Nurse Practitioner had came out. She said that she Lynlee's port had "malfunctioned" and the catheter was just floating around in her body. That they had to do emergency surgery NOW before any damage was done. I was really in shock. I hadn't prepared myself for this kind of worse. Everything after that happened so fast. The surgeon came out talked about the procedure, I was very adamant about the fact that another port HAD to be put back in. I also had to make sure they had called genetics (which they hadn't) because Lynlee's disorder prevents us from just having day surgery.
By 2:15 Lynlee was already in surgery. She had ate at 10am, but they thought that had given her enough time and they were not taking any chances of the catheter moving. She was in surgery for around 3 hours. They had to "fish" out the catheter which they said was the hardest part, then put the new port in. She was out of surgery by 5:30, and by 6:15pm we had her on her feeds. She was in recovery and most patients were trying to wake up. Not Lynlee she was awake, and hungry, and wanted up.
Shortly after that we were taken to our room. At 8pm they were taking an ammonia. I had again prepared myself that the level might be a little elevated. After all, she had been without her feed including meds for 8 hours, and had just gone through a 3 hour surgery. The level came back at 27. I was thrilled. I knew everything was going to be okay after that point. Her midnight ammonia was 34, and her 4am was 22.. Whew such a relief.
Lynlee was amazing through it all. From the time she left recovery she was up and ready to go until 10:30 last night. She wanted out of her bed, she wanted to play. I've never seen anything like it!
We did find out afterward that they were sending Lynlee's old port back to the company to see if they could research and see why it had came apart.
We came home this afternoon and Lynlee is doing wonderful. She had a nasty cold that is going around and that is our biggest issue at the moment, not the fact that she just had surgery. You wouldn't even know it. She is still rolling down the hallway like always.
Thank you to everyone that prayed for us, that kept us in your thoughts. I don't know how we could make it without our friends and family!
Sunday, September 12, 2010
Update
Well since my last blog Lynlee is doing all kinds of new things. She now waves Bye-Bye, Gives High Fives, and will give you kisses when you ask (by far my favorite!)
Every day I think I love her a little bit more if that's even possible.
Yesterday she was playing in her bedroom floor when I turned around and she had pulled herself up to her toy box. I was so excited!!
Ammonia wise, Lynlee has been fantastic! Last Monday it was 24! So amazing :)
She now has 4 teeth. 3 on the bottom, and 1 on top.
And or course with all of this good news I have some bad... It's seems Lynlee's medi-port is having problems. For the past two weeks it hasn't been drawing back blood. Last week I had taken her to the cancer center to get it flushed, and when they started pushing the saline in she started screaming in pain. They stopped immediately and said they were uncomfortable doing anymore. I've learned that sometimes when the line has came out of the vein, or had a whole in it can burn. However, we are praying it's just a clot and the pressure of it was hurting.
We go to Pittsburgh tomorrow to do a dye study test. They say the test is really simple. They will just put dye in her port, and follow it to see where it goes.
So after tomorrow they will be doing one of two things: 1. Putting medicine in, to be unclot the port or 2. doing surgery to put in another port.
I'm hoping, praying that it's the first one.. I know no matter what the outcome is, we will be fine. Lynlee will be fine! God will get us over this bump in the road once again.
Monday, August 23, 2010
Me and You
Two years ago today I married Ryan! I knew it then, and I know it now that we are soul mates. Somehow in this crazy life I've met the person I belong with. The person that completes me! I hope everyone finds that love someday!
I still smile when he pulls in the driveway after work. I sleep better knowing he is beside me at night. One of the many things I've learned in the past 10 months is that we can make it through anything together.
In the past years we've been blessed with both birth and deaths. Ryan is my rock! I know that I couldn't have made it without him. We were together for seven weeks straight in the hospital and not once would I have had it any other way. Every time that Lynlee has been hospitalized both of us has been there.
Ryan has seen me at my best and by far my worst. Our love is strong, and it's special. I Love you, Honey!
The song was had as our first dance still says it all!
Me And You: Kenny Chesney
Ordinary no, really don't think so
Not a love this true
Common destiny
We were meant to be
Me and you
Like a perfect scene from a movie screen
We're a dream come true
Suited perfectly for eternity
Me and you
Every day, I need you even more
And the night time too
There's no way
I could ever let you go
Even if I wanted to
Every day I live
Try my best to give
All I have to you
Thank the stars above
That we share this love Me and you
Every day, I need you even more
And the night time too
There's no way
I could ever let you go
Even if I wanted to
Ordinary no, I really don't think so
Just a precious few
Ever make it last
Get as lucky as
Me and you
Me and you
Wednesday, August 18, 2010
It feels good to help!
I don't blog about the G-Tube much. I don't really talk about it on and day to day basis unless I'm telling Lynlee "No-No" to stop pulling it. I looked on Facebook and I've never posted a picture of it. In fact, I only have one picture of it. Why? Well one it's always covered! Unless we are traveling, getting ammonia or getting a weight check she is always in a onsie!
Another reason I don't take pictures of it is because it's just normal for me. It's something we've almost always known. I don't really know what do to do with "normal" babies without G-tubes. I don't know how to really feed them or burp them or what to do when they are gassy? Lynlee has never drank more than 50cc's (1 1/2 oz) of milk from a bottle.
(I've never posted this picture because it doesn't look like anyone is standing behind her. Ryan took the picture and I was behind her, so don't turn us in to child services!)
So when Pittsburgh called me yesterday to talk to a family about living with a G-Tube I jumped on it. I wish I had a family to talk to before we had made the decision. In fact, if we would have made the decision sooner we would have probably been home 2 weeks sooner. I called the mom as soon as I hung up the phone with Pittsburgh. I was excited about helping. I've been "helped" so much along the way from other mothers with Lynlee's disorder and I hope I can be help to someone too.
As I listened to this mom talk about how she feels like she is forcing her child to eat, how she felt she was letting her child down by not being able to feed them, and the one that hit home... How can you put your child through something to make your life easier. It felt selfish! I remember feeling all of those things, but at the end of the day Lynlee HAS to get all her formula and her meds or she will be REALLY sick. The decision made sense to us
I hope that the information I have about the G-Tube both positive and negative helps this mother make the right decision. I wanted to let her know that a G-tube is not the end of the world. It was the beginning for us. ( I stole that last line from my dad!)
Another reason I don't take pictures of it is because it's just normal for me. It's something we've almost always known. I don't really know what do to do with "normal" babies without G-tubes. I don't know how to really feed them or burp them or what to do when they are gassy? Lynlee has never drank more than 50cc's (1 1/2 oz) of milk from a bottle.
(I've never posted this picture because it doesn't look like anyone is standing behind her. Ryan took the picture and I was behind her, so don't turn us in to child services!)
So when Pittsburgh called me yesterday to talk to a family about living with a G-Tube I jumped on it. I wish I had a family to talk to before we had made the decision. In fact, if we would have made the decision sooner we would have probably been home 2 weeks sooner. I called the mom as soon as I hung up the phone with Pittsburgh. I was excited about helping. I've been "helped" so much along the way from other mothers with Lynlee's disorder and I hope I can be help to someone too.
As I listened to this mom talk about how she feels like she is forcing her child to eat, how she felt she was letting her child down by not being able to feed them, and the one that hit home... How can you put your child through something to make your life easier. It felt selfish! I remember feeling all of those things, but at the end of the day Lynlee HAS to get all her formula and her meds or she will be REALLY sick. The decision made sense to us
I hope that the information I have about the G-Tube both positive and negative helps this mother make the right decision. I wanted to let her know that a G-tube is not the end of the world. It was the beginning for us. ( I stole that last line from my dad!)
Tuesday, August 17, 2010
A weekend away
Lynlee had her first vacation away this past weekend. We went to Beckley to stay at Aunt Pat's & Uncle Jim's lake house! It was a much needed weekend away!
We decided to get an ammonia checked on our way down. We pretty much pass the hospital, and it makes me sleep better. Ammonia... 28.. YAY!
This is only the second time I've been to a lake, and it is the most relaxing place I've found. It's so calm and quiet. Everyone even Lynlee just seems at ease and relaxed. The drive to and from the lake is about 3 hours. Lynlee never complains. I think she is used to traveling, she had her pappaw back there, and watched lots of Baby Einstein.
Lynlee went on her first boat ride and she loved it. She loved looking at the waves the boat made.
She had her first touch of sand. Of course I called our pediatric team in Pittsburgh to see what we needed to do about the sand getting around her G-Tube. We simply covered it with a bandage and away we went.
All and all the weekend was amazing, lots of relaxation and with only a pinch of unwanted excitement. We were doing a group picture when 1/4 of the family including me, Lynlee, and Ryan were on top of the boat house. A bees nest that was under the step got extremely upset with us and started attacking. Luckily the three of us was not touched but Lynlee had to be taken off the boat house by a ladder. She did great as her pappaw lowered her to the ground. Me on the other hand? Standing at the top crying like a baby. I couldn't even watch.
We had lots of laughs, lots of food, and lots of relaxation.. One of the best weekends yet!
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