Fontan Day 9: June 8 10:30 am (sodium too low)

Caden is beyond DONE having people poke him, wake him out of a dead sleep for blood draws, and simple things like replacing his leads.  Just DONE.  Now he doesn't even let us touch him.  We went down for the Echo and EKG yesterday and we were determined to get through these without being sedated.  He did ok with the Echo, but freaked on the EKG (the simplest test) of everything he has had to endure so far.  Again, HE IS DONE.!!! Caden wouldn't let anyone touch him so we left with 14 leads still stuck to his skin.  He continues to get stronger, is walking more, but unfortunately not really eating.  He manages to get a little nutrition through a vanilla boost in the morning and we nurse spaghettio's through the day, but the options on the menu are so limited.  We have grilled chicken (negative), veggie burger (negative), roast turkey (negative), turkey meatballs (negative), waffles, egg beater eggs….he just isn't a fan.  I think some kiddo's might like these foods but we were so focused on having him gain weight for the fontan he got used to some pretty high fat foods (per doctor's orders), now we take them away (so cruel….poor guy).  Today the blood draw indicated his sodium levels are too low to send him home.  All these diuretics to keep the fluids off the chest are also throwing off other things including his sodium.  He is at 122 and it isn't safe to send him home at this level. Dr. Neibler told us seizures could occur so we still try to find the right balance of sodium through these awful big sodium tablets that they are giving him, with his limited food intake, and fluid intake. It is indeed a balancing act.  Dr. Peter Frommelt came in and told us his Echo looked great, his oxygen sats are around 89 % (nice to see the high 80's) vs. the mid seventies.   I'm working on getting baked lays on the menu for him……under 3 grams of fat….more sodium…he might just be on his way to having a steady diet of baked chips for breakfast, lunch and dinner.  (C.Q…….new avenue for sales….insert smiley face here).  We pray for a good level of sodium on the next blood draw and for Caden to progress with his strength, endurance, and food intake.

Love to you all - Melissa and David

Fontan Day 7: June 6th 7:45 pm (Walking)

 Caden is still improving and getting stronger.  He still isn't keeping food down, and isn't taking in many liquids so we pray for more intake that stays in!  It took a good portion of the day to get him off all the sedation medications but by late afternoon he got up, and we went for 2 great walks to the playroom passing a few friends along the way including Nurse Shelly in the yellow who took care of Caden when he was a baby.

Gosh…..we love seeing him walk..  I especially love it with no tubes.  Boy, what a difference.  The first thing I noticed when he woke up from his tube removal was that he rolled onto his stomach/incision and he seemed to like it.  Ahhhhh………what a great sight.  Not sure how they don't find that uncomfortable but it sure was great to see him curled up in a ball, on his side, then rolling on the bed.  Magical!

Below is a little clip of todays walk.  We just pray for more strength, to eat and keep food down, and minimal chyllous that his body can process and eliminate by itself.

Have a great night everyone - Love Melissa and David

Fontan Day 6: June 5, 9:30 am (IV troubles)

Caden had a hard night.  Around midnight the IV they put in his hand went bad.  They weren't able to flush it, and it caused pain to Caden so they had to remove it.  They had difficulty again trying to find a vessel so they called the Transport Team who normally are very good at finding and placing IV lines.  Still no luck.  So, today in rounds they decided they are going to hold off one day (not to place a line) and do everything they can not to replace it at all (YEAH).  Caden is just exhausted from all the pokes throughout the night in addition, now that the central line is gone anytime blood needs to be drawn for labs they have to prick him vs. the central they could just pull blood (no pain) straight from the line.  Caden's chest tubes need to stay in another day too.  We got Caden up to walk and made it to to the playroom.  During the walk he drained another 20cc so they want to wait another day with more walking today to continue to move the fluids out.  It is great to see him up and getting a little stronger each day. Caden made it to the playroom but we had to ride back in the wagon.  I look forward to the day he can walk there and back.  In addition, Dr. Russell changed some of Caden's medications to solid that we can crush and attempt to put into food seeing the liquids are so challenging for him right now.  His heart rate continues to be on the high side around 90-112 at rest but this isn't concerning to them as he is really "dry.    


Thanks again for the prayers……Love Melissa and David

Fontan Day 5: June 4 5:30 pm

Today Caden had another good day.  He got his central line taken out (in his neck),  but unfortunately they had to put another line in to administer meds as his left wrist IV was going bad so they had to pull that one out too.  This process is just awful to watch.  For all the heart families out there ask for J-Tips.  This needle is something that pops on the end and shoots lidicane into the area where the needle is inserted within seconds.  High tech, scary, and cool wrapped into one.  Although any needle = BAD in my opinion, this by far makes it easier to get into those little arms.  Caden had PT this afternoon and it went ok.  Caden just struggles with having enough strength and energy to stand up, sit up, etc.  I asked Dr. Cava tonight during rounds when are we going to get our boy back.  Dr. Cava's response was he is going to feel pretty crappy while he is on all these direutics.  His sodium/electrolytes are off, and unfortunately we need him "dry" so those pleural drainage tubes will dry up and we can remove them.  I know this is just par for the course.  I think the worst thing about all of this is when we ask Caden how do you feel he responds…..."I feel sad"……………gulp………….he just has such sad eyes, no smiles, it just breaks my heart.  This is when my strength starts to diminish.   You can only be strong so long….then I think it's ok to just realize we are human and life is hard.  I know……baby steps.  Each day will get better, he will get stronger.  We have so many things to be thankful for and we do thank God for that.  I pray for a little smile tomorrow.  A little glimpse that Caden is rebounding.

 CHW heart families going into the Fontan……take advantage of the family resource center (by the fishtank).  This wasn't around for the Norwood (and/or didn't need it), but they have all sorts of movies to check out for the kids to watch while they laying in bed recovering.  Amazing!  They think of everything.
Love always - Melissa and David

Libby the Therapy dog 

Fontan Day 5: June 4 10:00 AM

Hey all.  Just a quick post to let you know that Caden had a pretty good night.  He was up a couple of times but not in real pain.  He was an active boy before the surgery so I feel he is just getting restless.  I slept next to him most of the night in the recliner.  It wasn't the most comfortable for me but when he said "Daddy, i want to hold your hand" who am i to refuse?!?  I am sure that I was more comfortable than Caden is right now anyway.

Speaking of discomfort, Caden will need to keep the plural drain tubes in one more day.  Melissa and I are fine being conservative with the decision.  This helps take all the fluid out and helps with any developing plural effusions.  Caden O2 sats have been 86 and 87 on room air which is great.  During rounds this morning the Dr's commented that this is really good.  His blood pressure and pulse rate have been a bit high but they are not concerned about it.  The Dr's indicate it is to be expected since they are keeping him dry.

Cadens CVP's that were originally a bit more frequent then the Dr's would like to see have now been controlled through the addition of some potassium intravenously.  Caden has been drinking water and for the first time, he had some actual food today.  Does 3 grapes, a bite of pancake, and a graham cracker count as food?  I believe it does.

Caden has been lethargic and we will work with him to sit up more today and do some reaching exercises (OT orders) to get him more active.  I can imaging that when the chest tubes come out tomorrow he will feel more like moving more. All in all Caden is doing okay and we believe he is on a good positive path.

Thank you for your continued support and all your prayers.  They are working!

A special happy birthday to my mom who is at our house looking after Griffin and turns 39 today.  Thank you mom.  We appreciate you and draw a lot of strength from you and your unwavering faith.

Thanks

DMC&G