Tuesday, September 15, 2015
Saturday, April 11, 2015
Thursday, May 8, 2014
Tuesday, March 18, 2014
Monday, March 10, 2014
Tuesday, February 25, 2014
My poor little Daylen and his brother both have had eczema since they were 6 weeks old. Daylen and Greyson both have recently had a bad outbreak (Greyson is more from teething and getting his molars) and Daylen was recently given a blood draw to get tested for dog dander allergies. His entire body is broken out and he has scratched every where mostly at night when we are sleeping so now he has scratches and scabs everywhere that have bled. No big open spots, just all small. I started both kids back on oatmeal baths and I just started using pure refined coconut oil on their skin to help it heal and soften since they dry up so fast.
I will post as soon as I hear what the verdict is.
Tuesday, January 28, 2014
In the last 3 years prior to Daylens last surgery, he barely spoke, maybe 25 words at most. We tried really hard to get him to speak but he mostly just mumbled everything together. I was told by several mom's that their boys speech took off after the fontan so I patiently waited. Sure enough after his surgery, even in those 2 weeks he started speaking more.
For the first time today, Daylen counted to 10 all by himself :) this makes me so happy!
Wednesday, January 8, 2014
We are 5 months post fontan and just had a routine check up with the cardiologist. Daylen had sat levels up to 88 which wasn't exactly what I wanted to see. I assumed his oxygen would be close to 100 but I guess I'll be happy with it if the cardio saw no issue. He had an echo done and they saw zero fluid around his heart. Dr Parikh stopped his lasix and has his aspirin as 5-6 days a week.
Daylen also got the thumbs up to fly overseas to visit family in Germany and meet them for the first time ever. We just may need a prescription for oxygen b4 we fly out but that'll be a later discussion.
Daylen doesn't have to be seen for another year :)) woohoo!
Tuesday, October 15, 2013
Cant believe my little HLHS warrior is about to turn 3 years old in less than a month. He is post fontan and doing so well...never once have I doubted how awesome my child is but if I could go back in time and tell the pregnant me that my baby will be fine, id save myself so many tears. These 3 years have put me in so many situations I never imagined being in but I wouldnt change any part of the journey. Im so thankful for this little guy in my life and I hope he continues to inspire others as time goes on <3
I wanted to share this updated picture if my son bc I feel this picture is worth a thousand words plus more. :)
Monday, September 9, 2013
Took daylen to see his cardio today and everything looked really good. His sats were 94, they said he had no symptoms of fluid build up but checked anyway on echo. During his echo, the cardio came in and showed me Daylens conduit fenestration which was hard to locate but looked really cool.
We will go back this winter for another check up :)
Lasix were decreased to once a day instead of twice at 1.3 ml ..aspirin kept the same (81 mg daily)
Wednesday, September 4, 2013
We got to go home on day 14 of being post fontan! Our day started at 8 am when the surgeon came in to remove daylens chest tube. Poor guy. We then had an echo done on daylens heart which looked amazing. After that, we got sent down for an xray! At about 330pm we were given the ok to go home! Of course we already had most of our stuff packed so we booked out of there as soon as we could!
Daylen went home on lasix, aldactone, and aspirin. He also has a script for lortab but we prob wont fill that.
I think the biggest thing Daylen was excited about was the fact that he was wearing shoes again :) he needed to show everyone!
We are so glad to be home and finally have our youngest back :)
Thanks everyone for following our story so far and praying for my sweer boy!
Ill update again after our follow up appointment in a week!
Monday, September 2, 2013
Daylen had a great day today :) fluid today was at a total if 67 ml ..thats barely over 2 oz for the day which is awesome!
Oxygen canula came off today - major step!
Daylen was able to go to the playroom several times and also went outside to the playground :)
Word on the street has it that chest tube will come out tomorrow along with a final chest xray! Will keep everyone posted :)
Sunday, September 1, 2013
We are currently off of oxygen as of 3pm and even with fluid build up, Daylen has maintained good SAT levels so far unless he gets angry.
Fluid drainage today was 107 ml which means we will not be going home tomorrow for labor day.
Daylen did get to meet thr other 2 boys here with hlhs that also had their fontans. Their names are Hunter and Carter and both are adorably cute and 2 years old!
Saturday, August 31, 2013
Still in the hospital. I can start to see the light at the end of the tunnel tho.
Today Daylen drained 99 ml total...thats almost an oz less than yesterday. The last few drains barely had much in them so lets pray its drying up!
Im gonna guess if it goes well tomorrow then we may go home monday or tuesday. Ill save my happy dance til I actually hear the words tho!
This is def Daylens longest recovery stay. Hes been so great tho and hes keeping a smile on his face :)
Todays sats got up to 94!! How awesome is that :D
Friday, August 30, 2013
Boy did I not expect to be here this long! This is Daylens longest surgery recovery. And the hardest part to grasp is the fact that his heart is fine, recovery went well in that department. Its just the common fluid drainage that the fontan brings to most patients. If it wasnt for that we would already have been home earlier this week!
Todays drainage was 120 ml which is more than yesterday. At this rate I dont see us going home any time soon. This makes me sad. I miss my baby Greyson and I miss my family life at home.
Daylen is still on oxygen, mostly due to the fact that his lungs still have fluid around them.
He barely takes pain meds and his chest is healing fabulously! Barely any scabs left!
His personality is once again shining thru like usual and hes been busy charming all the nurses. Its not fair that he cant go home when hes feeling normal. :(
Thursday, August 29, 2013
Doing the happy dance!! Daylen only drained a total of 3 oz today compared to the 5 oz yesterday! Pretty spectacular!
He also ate soooo much today! He also walked to the playroom by himself and back to his room. You could tell that kinda wore the kid out. But atleast we are making great progress. Now lets hope we can get home saturday!
Wednesday, August 28, 2013
Today we attempted to get Daylen off of oxygen and that worked for a few hours but then he fell below 85 so they turned it back up to .25L :/ I believe once the fluid is gone his oxygen issue will be better.
Daylen has been pain med free since yesterday! What a champ :)
We've had 4 stinky diapers today so I think his insides are catching up and I noticed his appetite woke up today with all that movement!
Today's fluid stands at 140 ml drained. A little better than yesterday but at least its progress!
Tuesday, August 27, 2013
We are so ready to get outta here :( too bad we cant!
Daylen drained about 180 ml of fluid today which is 6 oz :/ hopefully its less tomorrow so that we can at least be home by the weekend!
Daylens oxygen was decreased to .25L and he occasionally reaches the 90's.
We were able to go to the playroom but you can tell Daylen barely had any energy :( he took a 3 hr nap after. Poor thing