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!

Post fontan day 7

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

Post Fontan Day 6

Today was a good day! The nurses drained 150 ml of fluid from Daylens chest cavity. Thats 3 oz less than yesterday so im crossing my fingers tomorrow will look even better tomorrow!

Still on oxygen and still on all same meds!

Only other thing I can report is that Daylen went and played in the play room today :)

Day 5 post-fontan

Daylen was able to get out of bed again today and sit in mommy n daddys lap :) we colored a ton n even got a sponge bath from one of our fav nurses!

Daylen barely ate much but it was enough to give him a little energy.

We are still on lasix and aldactone for the fluid, taking lortab for pain, and taking aspirin for blood thinning. 

Fluid set us back a bit and so is oxygen. The nurses drained 230 ml of fluid out of Daylens chest cavitity. He was able to get his oxygen lowered to .5L and maintaining his SATs in mid to high 80's. Right now they want it above 85.

Depending on drainage tomorrow maybe we can go home tuesday or wed!

Step down! :)

And we are in the step down unit :) that means we are days away from going home :))

Last IV has been pulled.  Less than 3 oz have been drained so far from the chest tube. Fluid is starting to look clearer!

And look who got to see eachother :)

Post-Fontan Day 4

ICU doctor put in our transfer order to move to the step down unit :) she said they were a bit full on that floor yesterday so hopefully they have room for us!

Daylen drained a total of 247 ml of fluid yesterday which is a little over 8 oz! Thats quite a bit but hes healed up a lot better today! So far we only collected 20 ml of fluid for the morning.

Daylen is being switched to lasix orally instead of IV and is still taking lortab every 6 hours for pain. Hes made 3 bowel movements since we been here which is awesome!

Doctors orders are to eat more protein for the sternum to heal and to drink a bit more fluids.

Daylen also made the nurses a few drawings :)

Post Fontan Day 3

On day three we got the new chest tube put in and this one is so much better! The first few hours, Daylens nurse has drained almost 7 oz of fluid from around his lungs! That's a lot! She just tried draining him again and she barely got anything out so thats a good sign its drying up :)

Daylens cough is getting better now that most of the fluid is out.

The chest bandage is off and the site is looking fabulous.

Daylen has tossed and turned some but still doesnt want to get up and play. He finally ate some gold fishies (not a lot but its a start). The doctor put in his food order so now we can try and get him to eat!

The IV fluid is about out so the nurse will disconnect him from that soon and this will allow him more freedom!

And check those numbers and rhythms out :)))

Extra chest tube

Daylen is having his 2nd chest tube put in as I type this. The surgeon came by and said the fluid isnt alot but enough to need extra drainage and then we will be leaving the PICU. :)

1 step closer to going home!!

Post-Fontan day 2

Daylen was able to get his art line out as well as his cath for urination and his cath in his chest that had been numbing his chest. His stomach seems to be a bit swollen possibly from gas build up and the extra fluids so they changed up his dietetics and decreased them a bit to see if that'll helo. Hes not peeing as much as theyd like but I know how my child. He likes to hold it as long as he can.

His chest xray from earlier did show some fluid build up on the right side so they are going to watch it for a bit. If that happens to get worse, they will alleviate it by putting in another tube for drainage.

He went from having 3L of oxygen to 1L and his SATs are mid 80's.

He also managed to pull one of his IV's out so hopefully they will just use the central line if needed rather than putting another one.

Still agitated a bit but I think its his poor little tummy.

And the only other thing I have left to say is that I got to HOLD Daylen today :)) we mainly did it to see if we could relieve some pressure.