Hi Friends,
Well this morning didn't go as smoothly as planned... Evie had an upper GI scheduled for 8am, and after we got started her pulse and respirations dropped suddenly and they called a code four... otherwise known as a code blue... otherwise known as everybody get your butts down here and help. She was blue and unresponsive, it was pretty darn scary.
We were in the ICU all day today for observation but thankfully got to move back to the normal floor a few hours ago.
If you will please pray for Evie's strength, and my strength as she undergos more tests tomorrow I would deeply appreciate it. This morning should have been a routine test and tomorrow will be the same, she is just so fragile at this point.
Thanks for caring about us. Love you.
Sunday, January 17, 2010
Saturday, January 16, 2010
Saturday...
Hi Friends (:
We are still at the hospital, but got to see a few doctors today.
The pulmonologist had some interesting things to say... basically we need to figure out if Evie's episode last night is an isolated event, or if she has breathing trouble frequently. We are going to have an upper GI done tomorrow to check for reflux; a pH test, an echocardiogram, and a swallow study on Monday; and a sleep study Monday night. Then they think they will have a good handle on her breathing issues and what steps we need to take. Hopefully we can leave from here Tuesday and get her injection at UNMC that we should have had Monday.
The docs are thinking that the spots on her lungs aren't pneumonia, but rather little areas where her lungs have collapsed because of gunk, strain, or other reasons. This can heal itself thank goodness!
Please keep praying for Evie, she is doing well, but we have been sucking quite a bit of junk out of her nose. I would love to take her home, but don't want to take the risk either... I am glad we are in such good hands!
I got to have a quick pizza dinner at Zios with Kirst - it was great to breathe "normal people" air and laugh laugh laugh for a while! Aren't sisters the greatest? I'm so glad Ly and Eve will have each other.
I'll update tomorrow if we know anything.
Love you friends!
We are still at the hospital, but got to see a few doctors today.
The pulmonologist had some interesting things to say... basically we need to figure out if Evie's episode last night is an isolated event, or if she has breathing trouble frequently. We are going to have an upper GI done tomorrow to check for reflux; a pH test, an echocardiogram, and a swallow study on Monday; and a sleep study Monday night. Then they think they will have a good handle on her breathing issues and what steps we need to take. Hopefully we can leave from here Tuesday and get her injection at UNMC that we should have had Monday.
The docs are thinking that the spots on her lungs aren't pneumonia, but rather little areas where her lungs have collapsed because of gunk, strain, or other reasons. This can heal itself thank goodness!
Please keep praying for Evie, she is doing well, but we have been sucking quite a bit of junk out of her nose. I would love to take her home, but don't want to take the risk either... I am glad we are in such good hands!
I got to have a quick pizza dinner at Zios with Kirst - it was great to breathe "normal people" air and laugh laugh laugh for a while! Aren't sisters the greatest? I'm so glad Ly and Eve will have each other.
I'll update tomorrow if we know anything.
Love you friends!
Friday, January 15, 2010
at Childrens...
Hi Friends (:
What do I get for not posting all week??? An ambulance ride to the hospital! I'll backtrack a little... Evie's eye appointment went great - thank you for praying. No obvious signs of pressure, Praise God. Thursday we went to the pediatrician, Eve was up all night coughing, and her congestion was just unbearable. They put her on amoxicillin because she probably had a sinus infection.
Today we went to UNMC for her routine treatment injection... shot went fine, vitals went fine... left at about 5:15 (just in time for rush hour), and she suddenly got really upset about 5 minutes into the drive, it sounded like SCREAMING, SCREAMING, SCREAMING, SILENCE............... so I pulled into the nearest business, took a look at her and she wasn't purple, and not breathing.
After I called 911, got her inside and gave her a few breaths, the fire and rescue squad was there to take her to the hospital. After they got her breathing again she has been doing okay.
Long story short, they think she may have aspirated some of her nasal congestion into her lungs... or possibly vomited a little and aspirated it. For now they are calling it pneumonia and have her on some heavy duty IV antibiotics and IV fluids. She is going to see a pulmonologist tomorrow to check out her lungs and belly and see what they think.
We will probably be here for a few days. Thank you for praying friends, our God is so good and I thank him for every blessed day with my Evie Jayne and my Lyla. I have had to retell our "history" every time a new doctor comes into see her, and it is a good reminder of how incredibly BLESSED we are to have this precious girl in our lives. It's always interesting when they say "did you have a normal pregnancy?" ... I don't even know where to start besides to say that she is the definition of answered prayer.
Well I better get some sleep!
LOVE you!
Lindsey
What do I get for not posting all week??? An ambulance ride to the hospital! I'll backtrack a little... Evie's eye appointment went great - thank you for praying. No obvious signs of pressure, Praise God. Thursday we went to the pediatrician, Eve was up all night coughing, and her congestion was just unbearable. They put her on amoxicillin because she probably had a sinus infection.
Today we went to UNMC for her routine treatment injection... shot went fine, vitals went fine... left at about 5:15 (just in time for rush hour), and she suddenly got really upset about 5 minutes into the drive, it sounded like SCREAMING, SCREAMING, SCREAMING, SILENCE............... so I pulled into the nearest business, took a look at her and she wasn't purple, and not breathing.
After I called 911, got her inside and gave her a few breaths, the fire and rescue squad was there to take her to the hospital. After they got her breathing again she has been doing okay.
Long story short, they think she may have aspirated some of her nasal congestion into her lungs... or possibly vomited a little and aspirated it. For now they are calling it pneumonia and have her on some heavy duty IV antibiotics and IV fluids. She is going to see a pulmonologist tomorrow to check out her lungs and belly and see what they think.
We will probably be here for a few days. Thank you for praying friends, our God is so good and I thank him for every blessed day with my Evie Jayne and my Lyla. I have had to retell our "history" every time a new doctor comes into see her, and it is a good reminder of how incredibly BLESSED we are to have this precious girl in our lives. It's always interesting when they say "did you have a normal pregnancy?" ... I don't even know where to start besides to say that she is the definition of answered prayer.
Well I better get some sleep!
LOVE you!
Lindsey
Tuesday, January 12, 2010
Tomorrow
Quick Update:
We are taking Evie to see a pediatric eye doctor tomorrow... to see if she has any intercranial pressure going on (pressure in her head, brain swelling, etc.) and if that is why her soft spot is bulging. Will you pray that the doctor has a keen eye and can see anything that may be going on? We haven't had any reasoning for this bulging, and it's a little worrysome for us.
Thanks friends, i'll let you know how it goes.
Love!
We are taking Evie to see a pediatric eye doctor tomorrow... to see if she has any intercranial pressure going on (pressure in her head, brain swelling, etc.) and if that is why her soft spot is bulging. Will you pray that the doctor has a keen eye and can see anything that may be going on? We haven't had any reasoning for this bulging, and it's a little worrysome for us.
Thanks friends, i'll let you know how it goes.
Love!
Wednesday, January 6, 2010
Friday
Evie's story got bumped to Friday, and will still be on KETV at 6:45ish (: School is cancelled again tomorrow, for those of you who are out of town, it is crazy snowy here!!!
Did I say this was going to be an easy week??? I think I'll stop saying those things until the END of the week! (: On Monday we went into the pediatrician because Evie has had a cold, and I noticed in the morning that her soft spot is bulging a little. Our pediatrician noticed it too, and when we got to the Med Center for her treatment we had a brain ultrasound before she got her shot... therefore we were at the doctors office/hospital from 1pm until 7pm! Fortunately there wasn't anything remarkably concerning on her ultrasound, so we are going to have an MRI, probably another EEG, and maybe see a neurosurgeon in the near future.
Dr. Lutz is putting together a letter to send out to some specialists so they are all up to date on Evie's condition, and to see if they will examine her. Hopefully soon she will see a pulmonologist (since she is still requiring oxygen), a pediatric opthomologist (to look in her eyes and make sure there isn't more pressure than there should be) and a physical therapist, so I know what types of exercises I can do with her to help her fine/gross motor skills.
GOOD NEWS: she has gained weight!!! At the pediatrician she weighed in at a whopping 9 pounds 2 ounces! I am so relieved to have passed the 9 pound mark. In my eyes that means she is out of the 'leveling off' stage that she was in, and is growing. She was also longer. (: I'm so proud of her!
MORE GOOD NEWS: we are getting her central line (port, catheter, whatever you want to call it) taken out tomorrow!!! woo hoo!!! She is through the 4 weeks of lots of blood draws, so we are going to get it removed, I can't wait (:
Thank you for praying for us, Evie is sleeping on my belly right now, and I couldn't feel more blessed. Even with all of the appointments, scares, and delayed milestones, I wouldn't trade my Evie Jayne for a different healthy kid anyday. My prayer is that she will be as healthy as she can be, and stay her sweet little self.
Lyla is still cracking me up every step of the way... this morning she dropped a toy on the floor, looked at me, shook her head and said "oh crap." Do I want my 2 year old saying "crap" frequently? No... but at the time it was exactly the laugh I needed. She is the joy in my every day.
Love you friends! Hope you can tune in on Friday, if not it should be on the website www.kmtv.com. (:
Lindsey
Did I say this was going to be an easy week??? I think I'll stop saying those things until the END of the week! (: On Monday we went into the pediatrician because Evie has had a cold, and I noticed in the morning that her soft spot is bulging a little. Our pediatrician noticed it too, and when we got to the Med Center for her treatment we had a brain ultrasound before she got her shot... therefore we were at the doctors office/hospital from 1pm until 7pm! Fortunately there wasn't anything remarkably concerning on her ultrasound, so we are going to have an MRI, probably another EEG, and maybe see a neurosurgeon in the near future.
Dr. Lutz is putting together a letter to send out to some specialists so they are all up to date on Evie's condition, and to see if they will examine her. Hopefully soon she will see a pulmonologist (since she is still requiring oxygen), a pediatric opthomologist (to look in her eyes and make sure there isn't more pressure than there should be) and a physical therapist, so I know what types of exercises I can do with her to help her fine/gross motor skills.
GOOD NEWS: she has gained weight!!! At the pediatrician she weighed in at a whopping 9 pounds 2 ounces! I am so relieved to have passed the 9 pound mark. In my eyes that means she is out of the 'leveling off' stage that she was in, and is growing. She was also longer. (: I'm so proud of her!
MORE GOOD NEWS: we are getting her central line (port, catheter, whatever you want to call it) taken out tomorrow!!! woo hoo!!! She is through the 4 weeks of lots of blood draws, so we are going to get it removed, I can't wait (:
Thank you for praying for us, Evie is sleeping on my belly right now, and I couldn't feel more blessed. Even with all of the appointments, scares, and delayed milestones, I wouldn't trade my Evie Jayne for a different healthy kid anyday. My prayer is that she will be as healthy as she can be, and stay her sweet little self.
Lyla is still cracking me up every step of the way... this morning she dropped a toy on the floor, looked at me, shook her head and said "oh crap." Do I want my 2 year old saying "crap" frequently? No... but at the time it was exactly the laugh I needed. She is the joy in my every day.
Love you friends! Hope you can tune in on Friday, if not it should be on the website www.kmtv.com. (:
Lindsey
Tuesday, January 5, 2010
Evie on the News!
Hi Friends,
Evie will be on the morning KETV news tomorrow, with a preview at about 5:40, and the story around 6:45! If you are out of town, you can look later in the morning on www.ketv.com If there are school closings they may move it to later in the week (:
Love you friends! Be back soon.
Evie will be on the morning KETV news tomorrow, with a preview at about 5:40, and the story around 6:45! If you are out of town, you can look later in the morning on www.ketv.com If there are school closings they may move it to later in the week (:
Love you friends! Be back soon.
Sunday, January 3, 2010
WEEK 5...
Hi Friends and Fam,
My google calendar just "reminded me" that it is now officially the start of week 5 of Evie's treatment. Hallelujah!
Week 5 isn't just any week, it is the first week on Evie's treatment schedule that is non-existant, meaning that we still go in for her shots three times a week... but no blood draws, no urine samples, no physicals, nothing! We have a sheet of paper with little "x"s all over it indicating what tests are to be run, and there is nothing on week 5. Woo hoo!!!
Now we are looking at "landmark" weeks. The big weeks being Week 8, Week 12, Week 16, and Week 24. These first 4 weeks were intense monitoring and baseline information, which is why we had so much going on.
THANK YOU for praying for us last week. I haven't gotten a call yet about her EEG, but her skeletal survey went fine, no big improvements, but also no demineralization. That is good news. Treatment went fine Wednesday, physical exam went well Thursday, and treatment was also good Friday. I am a little dissapointed to say that Evie hasn't gained any weight, but she has grown longer, so that is good. She is still on oxygen, and has been eating and sleeping much better since that started. I can definitely tell she has grown, so hopefully she will start gaining weight also.
I celebrated the end of the week with an Apple Fritter and enormous Diet Coke on the way home... it was heavenly (: Oh, the little things.
I am going to post pictures on my next post - just realized how far behind I am on that!
Going to bed for now - thanks for checking in!
Love you friends, thanks again for your prayers, comments, and emails - they mean the world to me.
My google calendar just "reminded me" that it is now officially the start of week 5 of Evie's treatment. Hallelujah!
Week 5 isn't just any week, it is the first week on Evie's treatment schedule that is non-existant, meaning that we still go in for her shots three times a week... but no blood draws, no urine samples, no physicals, nothing! We have a sheet of paper with little "x"s all over it indicating what tests are to be run, and there is nothing on week 5. Woo hoo!!!
Now we are looking at "landmark" weeks. The big weeks being Week 8, Week 12, Week 16, and Week 24. These first 4 weeks were intense monitoring and baseline information, which is why we had so much going on.
THANK YOU for praying for us last week. I haven't gotten a call yet about her EEG, but her skeletal survey went fine, no big improvements, but also no demineralization. That is good news. Treatment went fine Wednesday, physical exam went well Thursday, and treatment was also good Friday. I am a little dissapointed to say that Evie hasn't gained any weight, but she has grown longer, so that is good. She is still on oxygen, and has been eating and sleeping much better since that started. I can definitely tell she has grown, so hopefully she will start gaining weight also.
I celebrated the end of the week with an Apple Fritter and enormous Diet Coke on the way home... it was heavenly (: Oh, the little things.
I am going to post pictures on my next post - just realized how far behind I am on that!
Going to bed for now - thanks for checking in!
Love you friends, thanks again for your prayers, comments, and emails - they mean the world to me.
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