Long overdue update!

We have been so busy we have failed to keep up with our blog so we apologize for that. In the last few years we have had no new complications from Daylens last surgery. He graduated from kindergarten and is now a big first grader! We celebrated his 7th birthday this past weekend and cannot begin to thank everyone for their support and keeping up with his story! He is our little angel although he sometimes is a handfull we couldnt be more thankful to have had the last 7 years with him. He has been a great big brother to his now 5 year old brother. Keep a look out for updated pictures and we will try to get back on top of posting.

Much love,

Dad

Sats are lowering

Daylen is officially 2 years post fontan and everything has looked beautiful from his color to his oxygen and his echos. However, the last 2 months he has been looking purple in the hands and feet so I had his pediatrician check his oxygen sat for me and he was hanging out at 81-83%. This alarmed us a little because 9 months ago at his cardio visit he was 94 which is usually where he hangs out at. I haven't noticed any decreased activity or other symptoms with these lower numbers. 

During Daylens fontan, they decided to fenestrate him along with fixing his stenosis problem in his pulmonary arteries. They were previously widened and patched but that failed to work so the next option was to run conduit for the extra oxygen flow. 

We have an echo scheduled for the 21st so hopefully that will give us answers on why he has dropped. Since his last surgery he was only gained 8 lbs and has grown 4 inches which isn't a huge growth spurt considering his fontan has to take him into adulthood. 

No fluid either from what the ped said when she listened to him. <3

Tball for Daylen

Last year we tried out soccer and Daylen did great with keeping up but he didn't seem interested in chasing the ball during both seasons he played so this year we are doing baseball! :) 

He's playing for the school that mommy and daddy both graduated from so that's really exciting! My big 4 year old heart baby is doing big things these days! 😊 

Oh and here is Daylen's little brother Greyson. Had to post an updated picture of him as well! 

Yearly check up

Daylens yearly check up went awesome. He did really well with all the machines surprisingly. His weight is 35 lbs (still on the small side for a 4 year old but we'll take it). He goes back in August for an ultrasound on his heart so I will post results from that but we don't anticipate anything less than perfect :) doctors words! 

My little soccer stud

Never thought I'd see the day where I'd get to watch Daylen play sports. I had little hope. But here he is 3 years later and showing the world he can in fact run around with the rest of the kids <3

Eczema update

Forgot to post about the boys having bad outbreaks! 

Blood test for daylen came back negative so a few days later we scheduled an appointment with an allergist and they tested him for 20 most common allergies and he tested negative for all of them. Including dog dander. We had already sold the puppy 2 days prior when daylens little brother became swollen in his eyes. They were both put on steroids and antibiotics and a week after medications and no puppy around, they had clear skin! It's been a few weeks since medication cleared outta their systems and no rashes! My only answer is the puppy had everything to do with it! I just can't figure out why tests would show negative :/

First practice

Daylen had his first practice for soccer and it's safe to say I can see his delays compared to the rest of the kids. My little guy was the shortest on the team and also had a hard time following direction. He depended on his coach, (who was very attentive to Daylen),  a little too much. He had fun though and laughed most of the time as the kids chased the ball. I'm proud of him for even being able to be where he's at in life. We dreamt of this day to happen and we aren't stopping til he says so! :) 

BIG milestone!

Going back in time when I was pregnant with Daylen, I remember asking if Daylen will ever be able to play sports. I was told most likely not, but that each kid is different. It's physically hard on them, and they tend to run out of breathe easier than most kids. I was told he won't go far with sports. My heart was broken, I cried over the fact that I was going to have a son who can't experience football or motocross. I cried over the fact that I was giving Daylen's father a son who he can't enjoy teaching the same sports he did so well in. I was upset, but then reality set in and I figured we will push him to do whatever it is he wants. Golf, drums, academics, he names and we will be right behind him telling him "yes son, you can do it" :) so this brings me to share that Daylen will be starting soccer soon!! I know he's just three and all they do is run around and enjoy kicking the ball but this is a BIG deal for us because this marks the beginning of his athletic capabilities and takes his HLHS journey to a whole new level!! 

My heart is bursting with joy!

Eczema nightmare

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.

Picking up quick

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!

Cardiologist visit

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!

Just being mushy

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. :)

Cardio follow up

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)

Discharge day

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!

Day 13

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 :)

Day 12

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! 

Day 11 post fontan

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

Post Fontan Day 10

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. :(

9 days and counting

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!

Day 8 has come n gone

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!