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.  

Not much change

I dont have much to update with except the dopamine has been stopped. Daylens heart rhythm has been irregular since yesterday so they stopped the sedation meds to see if it would help and so far it has! The art line is still in and word has it they may remove it today but I wont get my hopes up! His urine cath is still in place and thats one of his biggest nuisance.

Dr Kumar (one of the cardios i saw while pregnant w D) had made his visit n said hes pleased w how he looks. 

Will update later

Fontan update

Daylen had a great night recovery wise aside from his stubborn self screaming and crying from being scared and not wanting all those IVs on him. Everything went as well as they could have with no major concerns!

He received some blood last night in hopes to help his sat levels increase (which they did but kept dropping bc he was so upset last night)

Hes still receiving oxygen thru a nose canula and thats also helping his sat levels for now (when hes not ripping it out of his nose)

At about 4am the nurse finally decided to do something about his agitation and tried lortab to put him into a deep sleep. Go figure when it didnt work. An hr later I was back up trying to roll him back over and keep him from pulling everything off.

He has to be monitored closely until he calms down since he has some major lines in him right now that could make him bleed everywhere if those were to come out.

Hes still getting fentanyl, dopamine, and some hepapine. He was given aspirin last night for blood thinning for his stent.

He also was given some fluids from dehydration thru IV and had some gatorade by mouth.

Ventilation and medication

In the middle of updating the blog about him being asleep and ventilated still he ended up waking up and they took the vent right out! They stopped his dopamine to see if he will wake up some since he shortly fell asleep again after getting extubated. 

Hes in an out of consciousness so hopefully the little guy wakes up soon! Breaks my heart to see him miserable and scared :(

Other than that hes on lasix and prevacid for stomach acid control and blood pressure control. His BP dropped a few times but quickly picked right back up! His SATs are 90 and his color looks great :)

Post Fontan!

I have been waiting for this moment for 3 years and now I can finally say it!

WE ARE POST-FONTAN!!!!

The journey doesnt end here but atleast our little fighter has made it this far and I dont see anything stopping him yet!

Now its time to tackle recovery!

We are waiting for a chest xray to be completed and then we will be able to go back :)

Still on bypass

Daylen is currently still on bypass as we speak. Everything is going as planned. His procedure is a little lengthier because of the stent that Dr Parikh is placing into his pulmonary artery that had narrowed once again. After the stent placement, Dr Abraham is to perform the heart repair.

Thank you everyonr for the continued thoughts and prayers. We definitely can feel the power that prayer has brought to us.

Surgery time

They officially took my baby back to the OR. At this point they are putting in all lines needed for surgery and putting him on a ventilator and then breaking thru his chest which may take some time given the amount of scar tissue he has. His ultrasound yesterday showed that he did have some obstruction on the right side of his groin area probably from previous surgeries and procedures. No biggie, they will just the other side.

I was able to give Daylen his versed so he was calm going into surgery. This resulted in him hiding under his blankets, laughing and being silly. He also took teddy back (the same teddy that went back with him for his hemi) so hopefully he makes it back into his PICU room. Will update as soon as I hear anything!

For those that are unaware of whata goinh on. Daylen is having his final scheduled open heart surgery which will complete his reconstruction of his heart. This time around they are having his lower half of his body pumping blood into his lungs rather than his upper body. This makes it possible for him to grow into an adult with decent SAT Levels. :)

Pre-op

Today was Daylens pre-op prep. We were able to meet with Sarah, the surgeons nurse, Dr Abraham himself and his cardiologist Dr Parikh. His cardio looked over Daylen one last time and asked if we wanted to go further with the surgery or wait til his SAT's drop a little in spring. I told him we are mentally prepared now so tomorrow is for sure happening!

Daylen had an ekg done for his prep chart, 2 chest xrays, a blood draw, and a final ultrasound done on his groin area to make sure there was no blockage in any of the veins for the central line that will be placed there tomorrow.

Surgery will begin between 7 and 730 tomorrow morning. I will update via fbook and blog. Please keeo my little one in your prayers!

T-2 days

Tomorrow is Daylens pre-op appointment at peyton manning childrens. There we will have his ekg done, a final echo done, and blood drawn. We will also meet with his surgeon for any questions and to go over everything that will be done.

Tuesday will be Daylens fontan surgery, we will arrive at 630 and shortly after 8, his surgery will begin. They will also be repairing his left airway that has narrowed once again.

Will update tomorrow :) please keep my little guy in your prayers!

T-8 days

In a few short days I will be stopping Daylens blood thinners in preparation for his final completion of what his heart will finally be working like to be able to bring him into adulthood.  The final step..its bitter sweet but still scary. One chapter will close and only god knows what other chapters will open.  I never thought the time would come soon enough when we can finally say our child did it! He will be post fontan. :) please feel free to add Daylen to any and prayer lists and chains you are in reach of :) our family def needs the prayer power!

ENT visit

Forgot to post about the appointment that Dsylen had with the audiologist. I confronted the ped about getting Daylen tested gor his hearing because I felt as though he isnt hearing sounds correctly. He speaks plenty but his words come out soubding like he has some sort of impediment. Ive been getting asked a lot lately if my son is behind and no mom likes to hear this. Especially when the neuro pointed out that my child is indeed ahead.

The audiologist tested him for hearing and made sure the ear drums were fine and he passed every test.  There was 1 distinctive sound that Daylen wouldn't respond to but she wasnt worried about it.

So where to go from here? After Daylen has his fontan in august, we will be having a speech evaluation done.

Recovery day 2

Today we heard a lot of "owey" and no no's when it came to trying to eat. He haf no part in most of the food we tried feeding him. He also discovered today that his tooth went "bye bye". When he smiles, I no longer see an innocent set of pearly baby teeth. It looks like my child could audition for the next rap video with the amount of silver he has in his mouth :/ poor child.  Im prayimg as his face grows, those molars will be less and less visible when he smiles.

Recovery day 1

After receiving 6 crowns, 2 sealants, several cativites filled, and a tooth pulled....its no wonder we have had one of the worst days of our toddler years. Daylen was so upset all day and cried non stop :( poor guy is curled up next to me in bed sound asleep as im typing this. He refuses to take his medicine... all it is, is tylenol. Nothing hes never had b4 but id rather not traumatize him by forcing it down his throat. Not with another surgery coming up :/

His sats were hanging in the 60's most of the day but they finally climbed back up to 80's. No fever! :)

Also want to add that everyone that is on Daylens team medically...from heart team to pediatrics to dentistry...they have all proven to me that Daylen's life is top priority and im so glad ive chosen them to be a part of daylens jouney. They are all so wonderful to him, and they communicate so well amongst eachother when it comes to his needs and their concerns.

Lets hope for a better day tomorrow!

Dental rehabilitation

Daylen was scheduled in the OR today upon request by his cardiologist with his recommended anesthesiologist for some basic dental work. He had lots of decay on his molars and several cavities that need filled and also needed a tooth pulled that had chipped and broken enamel on it. All of this was due to having weak enamel from when he had all those surgeries and medication while his teeth were forming as a baby :/ if only we had used flouride instead of toddler toothe paste then im sure most of the work done today could have been avoided!

I swear, having a hypoplast takes a lot of trial and error. :/

I will update blog when we see Dr. Stockton!

Growth troubles

Aside from Daylen being a picky eater and barely gaining weight these days like I need, his health is being affected in other areas as well. His height. We took a trip to the ped's office for a regular check up and she noticed on his growth charts that his height curve is starting to take a turn. He's barely growing taller and she thinks its stunting bc of his lack of oxygen :/ 

His oxygen hangs out in the 80's still at 2.5 years old and 27.8 lbs, has anyone else ran into this issue?!