I am sorry that I just stopped Blogging. I have had a difficult time dealing with our situation with
Oct 4--Sydney's heart surgery is schedule for 6am Monday morning. Keep up the wonderful prayers!
Oct 5--The anesthesiology team just took Sydney back. It will take an hour and half or so to get her "prepped," so surgery will probably begin around 9 or so. We'll update again when we hear that surgery has begun. Dr Peeler cam by, and said that Sydney should be done around 11:30am.
Sydney if off the by-pass machine and her heart is beating on its own! Surgery should be over soon
Sydney is done with surgery! Her sats are in the high 80s to low 90s and she is breathing all on her own. We should be able to see her within the hour. Thank you for the prayers!
In with Sydney now. Sydney is going great, awake and talking, asking for television, her milk, and "lipstick."
Oct 10---cuddled up with her 6 year old. I have really been missing her while Sydney had been in the hospital. Sydney doing great though!! She needs to get her O2 up some more, so getting her moving will help. Did I mention...she is no longer in the PICU!!!
Oct 12—Aubrey went apple picking with the Kurz.
Sydney is doing great. We are still working on her o2 levels (in mid to low 80's). Doc's hope for upper 80's before d/c. Maybe home in the next few days. I am ready, when she is ready to go home.
Oct 13 1230pm--In the car on our way home with Sydney.
Oct 14---is grateful for Sydney's life and the people who helped her get this far. I huge thanks to Dr Peeler for saving my baby's life.
Oct 21--is worried about Sydney's sats (low 80's)..trending down. Just hoping her meds need to be changed. Will find out tomorrow am with cardio.
She was in the low 80's before surgery. Syd was d/c'd at 85% and higher
I am trying to breath. She needs fluid to keep her o2 level up...so we are hoping the fluid meds are what is doing this to her sats down. I was just hoping the reduction at this point would have changed since this afternoon. Maybe not enough time?
Oct 22--Sydney got a good report from the cardio doc. She believes Sydney is too "dried out" from her lasix. The meds have been reduced and we should seen an improvement in a few days, Her heart function is good, but still in junctional rhythm.
Oct 27--in lysol land. Aubrey has Type A and Type B Flu. She seems to be doing well despite the 101 temp....see is playing. Trying so hard to keep my girls apart so Syd and the rest of us do not get it.
Oct 29--Aubrey has tried so hard to not spread the flu since she has been at home. Despite our efforts, Sydney now has a 101 fever. I pray this will be mild, being that Syd is only 3 weeks post-op heart surgery.
Thanks for all of the prayers!! Sydney has been started on Tamiflu, and seems to be ok this morning. The evenings seem to be when my girls go down hill and get their fevers. They are both happy to be able to be at least able to play together again.
Oct 31--We are hanging in there. Both girls have the flu, and Aubrey stared to have some asthma issues last night. Our doc was on call, so it was treated quickly and she is doing better today. Syd seems to be fine....knock on wood. I hope we are at the end of this for both of them.
Hoping the girls continue to get better. They are both very sad about missing Halloween and their friends.
Nov 1--is working on homework with Aubrey. Trying to get her caught up, so she can go back to school next week.
Nov 2--Sydney's sats at 70= no sleep for mama. Mama's tired. Sydney is happy and playing.
Syd's primary card doc was not in today, but I talked with one of her partners. He said that it is normal to have these fluctuation when recovering for the fontan. He said it can take a couple months to recover. Well, come to find out the sat decrease was more due to the ending of the flu. She started coughing, so I gave her a neb. Sats went up to 76 and later up to 83. Her sats currently have been 80 and above since coming home. I have been told this will improve with time. She got really dried out from her diuretics, then ended up with the flu....so I don't really know what is her normal yet
Nov 3--Aubrey 's neb done--Check----Sydney's neb done--Check----Steve's neb done--Check----Time to relax----ahhhhh----then I mess up the color on the TV-GRRRRR!
Steve and Sydney have Bronchitis, and Aubrey has had major asthma issues. The flu itself wasn't that bad...it
is the problems that follow it. I has been challenging.
Nov 8--Just got back from Deltaville after visiting the grandparents. Wonderful visit....and everyone came back looking so much better!!! Sydney is pink again, sats better and playing!
Nov 11--Sydney is happy, sassy and pink. She is satting at 88% tonight!! This is amazing! Keep it up Syd! Now we just need normal sinus rhythm.
Nov 13--tired. Sydney thought it would be a good idea to keep me up all night because she did not want to sleep alone
Nov 15--had fun with the kids outside today. Beautiful, sunny day! Aubrey bike riding and Sydney rolling her little car around. Wonderful drop by visits and dinner with friends. Great day!
Nov 17—I am feeling yucky today....wishing Steve would come home soon.
Nov 18--still feeling yucky....I think it's not viral...but crohn's instead...and of course Steve will be working late.
Nov 27--Happy Thanksgiving!
Tired from Black Friday shopping!! It was crazy and fun...so worth it!! Having great company made it all worth it.
Dec 3--happy!! Sydney pooped on the potty for the 2nd day in a row!!! Go Sydney!!
Dec 4— 3 years ago today, Sydney came into the world. I have stressed, laughed, cried, sang, worried, prayed, and embraced you throughout this entire journey. I feel blessed to have you and love you. I would not change a thing if it meant not having you. Happy birthday to my big girl, Sydney.
Dec 10--happy our Christmas tree is up and decorated. Thank you to the Kurz family for helping us "trim it".---On a funny note, Aubrey thought we were really "trimming" the tree, and was quite upset with this. All is good now.
Dec 18--Thinking about Sydney's Cardiology appointment today, and wondering what is next for Sydney. She is wearing a holter monitor for the next 24 hours....this info will tell us what is next. If you could say a little prayer for sinus rhythm that would be great
Dec 20--I feel blessed to be included in a wonder and perfect day!! Gingerbread houses, cookie making and decorating, sledding, the sounds of children laughing, and special friends.
Dec 22--I am asking for prayers today....for good results from Syd's holter test.
No info could be retrieved by the holter monitor test, so we will have to repeat it. So maybe next week we will have more info on Syd's rhythm.
They are not sure what happened. The doc and RN tested the monitor (the nurse wore it in the office---funny huh!) and they could not find anything wrong with the machine. Maybe Sydney bumped it? I don't know...but they are going to have me check it often the next go around. Yes, I was VERY disappointed, but Syd was getting a cold during this....so maybe the delay will be better.
Dec 24--Waiting for Santa........Merry Christmas to all and all a good night. Happy Birthday Jesus!
Dec 27--saw "Alvin and the Chipmunks... The Squeakquel" this evening. It was great!
Dec 28--No holter monitor today....Syd's sats are down b/c of a cold. Off to the peds office instead Bummer:( We all have the yucks!
Did you know my 3 year old daughter, Sydney, has a CONGENITAL HEART DEFECT. IN her short life ,she has had 3 open heart surgeries. People do not know that Heart defects are the # 1 birth defect, and they affect 40,000(1 in 100) babies born a year. Please help spread awareness and pass this along.
Jan 1, 2010--Happy New Year to all. May this year bring happiness, love, and health.
Jan 5--Syd's sats are down....78%....not profusing well....dehydrated....just got home after a visit to the ped's office again....chest x-ray done....blood work down....now we wait.
Jan 11--Sydney's hanging in there. Sats have been up and down. We are trying a few new things to see if this will help her shake this infection. Her spirits are good....but that is Sydney....a strong little girl. Momma needs a little of that right now.
Jan 13--Sydney is eating! Yeah! She needs to gain weight badly. She was 30 before surgery and now she is 27 1/2. Sats are up (85-90), which is the best I have seen---ever!! I hope things are on the up and up. Sydney is still getting nebs every 4 hours though. Baby steps.
Jan 14--Sydney had another good day. Let's pray this continues. Being optimistic has been hard lately.......because I always fear when the next ball to drop.
Jan 28--I wish my head did not hurt so bad.
Jan 30--Bring on the snow!!
Jan 31--I took Sydney, my 3 year old, sledding today. She looked at me so sweetly while I was pulling her on the sleigh and said, out of the blue,"Mommy, why did I have to have surgery?" I was dumfounded...she was asking me this months after surgery...so I answered, "because you have a booboo in your heart that the doctor needed to fix." So much for such a little girl to have to process.
Feb 7--♥ ♥ ♥ ♥ Congenital Heart Defect (CHD) Awareness Week - Feb. 7-14 ♥ ♥ ♥ ♥
My 6 year old daughter, Aubrey plans to participate in "Jump Rope of Heart" in honor of her 3 year old sister Sydney, who has had 3 heart surgeries in her short life so far. Please, help support her cause. Aubrey feels proud that SHE can do something.
Feb 8--In the words of Helen Keller,"The most beautiful things in the world cannot be seen or even touched, they must be felt with the heart." ♥ ♥CHD Awareness Week ♥ ♥
Feb 9--Sydney may have reactive airway disease...as if having a heart condition was not enough. Time will tell.
Feb 11--is waiting to hear from UVA....Sydney needs to have a heart cath done...O2 sats 79.
Feb 14--Today is Congential Heart Defect Awareness Day. Today is a day with so much emotion and power behind it. Today we celebrate "Heart Day". We love you Sydney.
Feb 16--Sydney's o2 levels up and down. She went down to 67 last night and I freaked out a bit. I woke her up, made her drink (fluid helps her) and gave her her inhaler. Waiting for a date to close
Sydney's fenestration (which is a hole that was placed in the heart during her last surgery to help with easing the pressure in her lungs).It is time.
Feb 17--When it rains...it pours. Sydney was up vomiting all night long.
Feb 18--Sydney's heart cath is scheduled for March 4. Pre-op work up on March 1. The plan is to also look are her heart rhythm status too. Heart rate dropping into low 60's upper 50's at night and O2 sats upper 60's while sleeping. We cannot seem to get her O2 sats higher then 79 most of the time.
Raced to Ped's office. Syd looked bad after her nap. Lips and tongue blue. O2 sats 69-73. Sydney chest is tight and wheezing. Spoke with UVA and if lungs cont to be an issue, they may have to cancel the cath. Nebs and oral steriods given to help Sydney open up.
Feb 19--Sydney's sats are back up with nebs...now in the 80's. Cardio, pulm and ped doc's all working to get Sydney better. I really like Sydney to be pink.
Hey Christy,
ReplyDeleteMy goodness, what a horrible few months for your family. I can't imagine the torture of the ups and downs. Please know you're in my thoughts and prayers. Hoping there are answers for Sydney soon, and that you get some rest - it's so long overdue.
I don't see you much these days, but want you to know how much I admire you. You're one heck of a strong mama!!!
xoxoxo
Kim