Just wanted to fill everyone in about Lilly's appointment today. When we got there (in the snow storm) she was given a drug a little stronger than Benadryl called chloral hydrate. This medication was just what we needed! It put her to sleep and gave the rest of us in the room comic relief. Lilly was in a "drunken state" and could not stand or sit and giggled a lot! I cried laughing so hard!
Under sedation, her O2 stats stayed in the low 90's (awesome) and her heart rate was normal. We got a wonderful Echo which showed us that she will be able to wait until a later time to do her final Fontan surgery. She is doing so well that starting next week we are lowing her Spironlactone to once a day, within the next month or so this will be taken off altogether. Within a few months, at her next Cardiologist appointment, we will also take her off of the Captopril and onto a medication that can be taken once per day. This means that she will be on THREE medications and it will only need to be given once a day!! Yay! Lilly has made so much progress with her heart that Paul and I joke that she is "fixing herself".
Oh yeah, her G-tube is now just a hole that will close by it self within the next few weeks. We are placing Tums with gauze over the hole where the tube had been to decrease the acid that touches her skin.
After the appointment, we ate lunch, which she scarfed down, and headed home. Lilly slept all the way home and was still woozy when we got home.
Tomorrow Dylan, Lilly and I get to go see the eye doctor here locally. I am hoping that the kids sleep in so I can get some house work done and still have at least a few hours of sleep. Thank you all for the prayers and support because they have been answered yet again. I will talk to you soon with anything else that may pop up!
We set up this blog to update about Lillyann's struggles and triumphs with Hypoplastic Left Heart Syndrome. Born March 24, 2009 ~ 1st heart surgery (Norwood) April 1, 2009 ~ 2nd heart surgery (Glenn) July 10, 2009~ G-tube placement September 22, 2009 ... 3rd heart surgey (Fontan) Sept. 11, 2012.
Monday, January 31, 2011
Thursday, January 27, 2011
A Date Has Been Set!
Monday, January 31st, Lillyann will be admitted into the Marshfield Clinic in Masrshfield. At 7:45 Am she will be sedated and the G-tube will then be removed!! They say that there will be no stiches, only Tums will be used to "suck-up" the acid until she is fully healed. An Echo will also be done along with some blood tests for her Genetic study. I am a little nervous as Lilly has not been sedated for a long time. Now that she is older, I know that this will be hard not only for the nurses, but mostly for me. I am confident that she will come out of this even more crazy that what she is going into it.
We actually opted to have her sedated to ensure that she would be in no pain and we could get a really good Echo after the G-tube is removed. I will be sure to update everyone when the time comes.
We actually opted to have her sedated to ensure that she would be in no pain and we could get a really good Echo after the G-tube is removed. I will be sure to update everyone when the time comes.
Tuesday, January 18, 2011
ER visit
Hi everyone! Last week was pretty eventful so I wanted to fill everyone in.
For all of you that know Lilly, she is a climber and loves to get into trouble...a typical 21 month old starting her terrible two's a little early. On Wednesday night, Lilly had climbed onto our dining room chair and before I was able to intervene, fell off backwards and smacked her head pretty good. I ran to pick her up because she had not cried and her eyes rolled to the back of her head. Let me just say that my heart stopped and boy did I freak out!!
She had knocked herself unconscious and the 911 call was made. Surprisingly the first responder team got here pretty quickly...so did the phone calls from our worried neighbors. Although they had stopped at the next door neighbors thinking it was them who called in, who informed them they should check to see if I was the one who made the call. I don't really blame the First responders as we have 30 some inches of snow and you can't really see the fire numbers very well. When they did arrive to our house, she was very white but was alert when they arrived but they wanted to take her in to be checked out just in case. The first responders could not have handled the situation better and both Lilly and Dylan got new stuffed bunnies from the EMTs.
Dylan was prepared to stay at the house with the first responder Rick, however Grandma and Grandpa followed Paul home and arrived just as Lilly and I were getting into the ambulance.
Lilly actually did really well on the trip to Chippewa Falls (it is an hour drive) and Rick taught her a new word, "bunny". He was really a lifesaver on keeping her still and quiet on the ride. Her O2 stats were 90 on the ride over ( I knew that was wrong!)
By the time we arrived, Her O2 stat was right where it has been, 80-85%. Lilly was back to her normal self and we could finally see the bruises from her fall. One above her ear, on her shoulder and one on her hip. Needless to say she had had some other falls that week and had fallen out of bed and played hard with Dylan. These also made "wonderful" bruises on her head; a goose egg on her forehead and one on each of her cheek bones. The ER doctor swears that Dylan is beating her up, I said "You should see my son, Lilly is the one doing the beating". This is true.... Lilly loves to be "one of the boys" and it can be funny the things she can come up with.
Anyway, all was well and she was released within an hour.
Thursdays was her Cardiologist appointment (no, we did not do an ECHO). Lilly did amazingly well and did not cry when they listened or did her blood pressure or weight, 17 pounds 14 ounces by the way!! We should be able to push back the Fontan farther.. they are now thinking around 3-5 years old. She did get approval to have the G-tube removed and we are looking into a date and I should know more by the end of the week. They will sedate her for the G-tube removal and then we can make sure that we get a really good ECHO as well, it is better for all of us. This will be done in Marshfield because our local hospitals are not equipped to handle her if something would go wrong.
Friday, we had a routine appointment where Dr. Jeremy Forster put in his two cents about her G-tube being removed. He thinks that we should get some special casts for her arms and legs, along with a helmet and make her into "Iron Baby". We all were able to get some humor out of the activity level of our dare devil.
I will let everyone know when the appointment will be scheduled for the G-tube removal. Until then stay healthy and God bless.
For all of you that know Lilly, she is a climber and loves to get into trouble...a typical 21 month old starting her terrible two's a little early. On Wednesday night, Lilly had climbed onto our dining room chair and before I was able to intervene, fell off backwards and smacked her head pretty good. I ran to pick her up because she had not cried and her eyes rolled to the back of her head. Let me just say that my heart stopped and boy did I freak out!!
She had knocked herself unconscious and the 911 call was made. Surprisingly the first responder team got here pretty quickly...so did the phone calls from our worried neighbors. Although they had stopped at the next door neighbors thinking it was them who called in, who informed them they should check to see if I was the one who made the call. I don't really blame the First responders as we have 30 some inches of snow and you can't really see the fire numbers very well. When they did arrive to our house, she was very white but was alert when they arrived but they wanted to take her in to be checked out just in case. The first responders could not have handled the situation better and both Lilly and Dylan got new stuffed bunnies from the EMTs.
Dylan was prepared to stay at the house with the first responder Rick, however Grandma and Grandpa followed Paul home and arrived just as Lilly and I were getting into the ambulance.
Lilly actually did really well on the trip to Chippewa Falls (it is an hour drive) and Rick taught her a new word, "bunny". He was really a lifesaver on keeping her still and quiet on the ride. Her O2 stats were 90 on the ride over ( I knew that was wrong!)
By the time we arrived, Her O2 stat was right where it has been, 80-85%. Lilly was back to her normal self and we could finally see the bruises from her fall. One above her ear, on her shoulder and one on her hip. Needless to say she had had some other falls that week and had fallen out of bed and played hard with Dylan. These also made "wonderful" bruises on her head; a goose egg on her forehead and one on each of her cheek bones. The ER doctor swears that Dylan is beating her up, I said "You should see my son, Lilly is the one doing the beating". This is true.... Lilly loves to be "one of the boys" and it can be funny the things she can come up with.
Anyway, all was well and she was released within an hour.
Thursdays was her Cardiologist appointment (no, we did not do an ECHO). Lilly did amazingly well and did not cry when they listened or did her blood pressure or weight, 17 pounds 14 ounces by the way!! We should be able to push back the Fontan farther.. they are now thinking around 3-5 years old. She did get approval to have the G-tube removed and we are looking into a date and I should know more by the end of the week. They will sedate her for the G-tube removal and then we can make sure that we get a really good ECHO as well, it is better for all of us. This will be done in Marshfield because our local hospitals are not equipped to handle her if something would go wrong.
Friday, we had a routine appointment where Dr. Jeremy Forster put in his two cents about her G-tube being removed. He thinks that we should get some special casts for her arms and legs, along with a helmet and make her into "Iron Baby". We all were able to get some humor out of the activity level of our dare devil.
I will let everyone know when the appointment will be scheduled for the G-tube removal. Until then stay healthy and God bless.
Wednesday, January 5, 2011
Lillys GI doctor appointment
First, let me say I am happy that the newest member of the Smith Family arrived on December 28th a Happy Baby boy, Griffin. I am so excited to be able to meet him when we get together next!
Okay, down to business. Lilly's doctors appointment yesterday went suprisingly better than expected. She is still at 17 pounds (7.72 kg) although she is eating non-stop. We have switched her off of the Lactalose ( a laxitive) and moved to a chewable Peda-Lax. So far so good and I like not needing to struggle to get her to take it! She is also in the 10% for her hight and only 3% for her weight. Once we can get her weight closer to her height, we will look into having the G-tube removed. Dr. Fish thinks theat we will change the tube out for a helmet as he witnessed her "terrible two's" fisrt hand. She climbed onto the swivel doctors chair and attempted to grab the blood pressure cuff when the chair slid out from under her and down she fell. She of course was unharmed besides her pride. I think she was more mad at the chair for moving on her...
On the 13th, we have her Cardiologist appointment along with the awaited ECHO. We will see how this goes as I really do not want to make a trip to Marshfield in the wonderful Wisconsin snow.
That is all for now, both kids are sleeping and my house is a mess!! My time to clean. Prayer to our heart families for continued health though the winter months and Congrats to the Smith Family on their newest addition!
Okay, down to business. Lilly's doctors appointment yesterday went suprisingly better than expected. She is still at 17 pounds (7.72 kg) although she is eating non-stop. We have switched her off of the Lactalose ( a laxitive) and moved to a chewable Peda-Lax. So far so good and I like not needing to struggle to get her to take it! She is also in the 10% for her hight and only 3% for her weight. Once we can get her weight closer to her height, we will look into having the G-tube removed. Dr. Fish thinks theat we will change the tube out for a helmet as he witnessed her "terrible two's" fisrt hand. She climbed onto the swivel doctors chair and attempted to grab the blood pressure cuff when the chair slid out from under her and down she fell. She of course was unharmed besides her pride. I think she was more mad at the chair for moving on her...
On the 13th, we have her Cardiologist appointment along with the awaited ECHO. We will see how this goes as I really do not want to make a trip to Marshfield in the wonderful Wisconsin snow.
That is all for now, both kids are sleeping and my house is a mess!! My time to clean. Prayer to our heart families for continued health though the winter months and Congrats to the Smith Family on their newest addition!
Saturday, January 1, 2011
Happy New Year!
I am sorry that the posts have been rare lately. It has been so crazy with Christmas and working that when i do have the time, I am just so beat down that I am unable to write or update you.
November and Thanksgiving was pretty uneventful...thankful that we have all pretty much been healthy and hospital free. It made me realize where we were a short year ago. We did manage to take some family pictures ( after two different attempts...thank you Sears) and got some really good ones. My poor Blazer broke down, of course on the coldest day of the year so far, and I missed a few days of work and then the runny nose sickness cost me a few more days off.
December was very crazy with the Holidays and family gatherings approaching. In mid-December, Lillyann had a weight check...17 pounds!! Can you believe it? I know that I couldn't! We have not even used her G-tube more than twice in the last three months. And the kicker, two days before Christmas, I lost my job. I knew that it was coming but it still does not make you feel any better.
On Christmas the kids made out like spoiled bandits.. what you would all expect! We went if for Synergist (sorry if the spelling is incorrect) which Lilly will get monthly until Spring to prevent any respiratory bugs.
As for the New Year, we have four appointments in January 2011 a few for a doctors check-up and a GI check along with the attempt to do an ECHO. They will attempt to do one without sedation here at our local office, but if she doe snot allow it, they will do a sedated ECHO in Marshfield Wisconsin. This ECHO is so important as this will give us a better idea of how her heart is working and if any medications need to be adjusted.
We pray for all of our heart kids and families daily and hope that everyone has a happy and healthy New Year to come. A big and warm wish to the Smith Family for their Baby number two!!! Hope that you enjoy the pictures!
November and Thanksgiving was pretty uneventful...thankful that we have all pretty much been healthy and hospital free. It made me realize where we were a short year ago. We did manage to take some family pictures ( after two different attempts...thank you Sears) and got some really good ones. My poor Blazer broke down, of course on the coldest day of the year so far, and I missed a few days of work and then the runny nose sickness cost me a few more days off.
December was very crazy with the Holidays and family gatherings approaching. In mid-December, Lillyann had a weight check...17 pounds!! Can you believe it? I know that I couldn't! We have not even used her G-tube more than twice in the last three months. And the kicker, two days before Christmas, I lost my job. I knew that it was coming but it still does not make you feel any better.
On Christmas the kids made out like spoiled bandits.. what you would all expect! We went if for Synergist (sorry if the spelling is incorrect) which Lilly will get monthly until Spring to prevent any respiratory bugs.
As for the New Year, we have four appointments in January 2011 a few for a doctors check-up and a GI check along with the attempt to do an ECHO. They will attempt to do one without sedation here at our local office, but if she doe snot allow it, they will do a sedated ECHO in Marshfield Wisconsin. This ECHO is so important as this will give us a better idea of how her heart is working and if any medications need to be adjusted.
We pray for all of our heart kids and families daily and hope that everyone has a happy and healthy New Year to come. A big and warm wish to the Smith Family for their Baby number two!!! Hope that you enjoy the pictures!
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| Kix works wonders for quiet kids! |
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| this picture wasn't planned. Just started snapping them |
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| Dylan being Dylan |
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| Cute as can be! |
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