Irregular Heartbeats - March 9, 2013

Caden had a regularly scheduled cardiology appointment. We are almost 10 months post Fontan Surgery and at today’s cardiology appointment Caden did awesome.  He took x-rays like a champ, sat still for all the listening to his heart and did great with the unexpected EKG.  Even pulling off the stickers from the EKG, which we know is painful he stayed tough.  We think Caden now understands that x-rays, blood draws, EKG’s and the like are part of his normal and he knows crying or complaining wont make it stop.  He is a tough guy.

The chest x-ray “looked great” and was clear.  His saturation level is at a great 95 % which we were happy to hear.  Dr Peter indicated as long as his sats are in the 90’s he will  not push to have the fenestration closed.  They ran the BNP (B-type Natriuretic Peptide) number which is how they track if the heart is approaching failure.  While the BNP number was 18 back in November and it came in at 79 this time, Dr Peter indicated that heart is not considered in any type of failure until the BNP number reaches 100.  We discussed these numbers quite a bit and Dr. Peter indicated that the number can fluxuate and if we ran it in two weeks time it could be back to 16.  We will see.

Now the news we weren’t counting on.… Dr. Peter Frommelt heard some irregular heartbeats.  Through listening he heard one out of every ten beats was irregular so they ordered and EKG on the spot to learn more.  The EKG showed no irregular heartbeats however we need to learn more. 

Caden was sent home with holter monitor to wear for 24 hours .  This monitor is hooked up to 5 leads on his chest and will monitor every beat of his heart for 24 hours.  Caden does not mind wearing it and even woke up last night afraid he lost his “computer:.  The results from this monitoring will give them a better idea what is going on.  Dr. Peter said sometimes this occurs after surgeries due to scar tissues on the heart.  At this point a new medication digoxin is being added to his Enalapril, Warfarin, and Aspirin to help his heart function.  We will know more information in a couple of weeks after they analyze data.  Then in June another Echo of the heart will be done.    Please pray the irregularity it is nothing and can be controlled by medications.  Also, please pray for a low BNP number.

Caden has been otherwise been very healthy, doing great and now up to 32 pounds.   He absolutely loves playing in the snow and would stay out there all day if we let him.  He has been doing lots of sledding as of late. We have had some wonderful snowfalls that he has been able to play in.  He finally got to build the snowman he had been talking about since winter started. Monday 3-11 we will celebrate Caden’s 4^th birthday.   We have been blessed.

His brother Griffin is now 30 pounds catching up quickly.  We have a scheduled surgery on Tuesday 3/12 for Griffin to remove a dermoid cyst in his nasal bridge (that he was born with) by the same ENT that placed his ear tubes.  He had an MRI months ago to ensure this cyst was not connected to brain tissue (which it is not) .  Apparently these types of cysts can become infected and the younger he is when we do this the less likely it will scar.  Unfortunaetely,  Griffin has gotten sick (another ear infection since tubes have fallen out) and we aren’t sure if it’s the Rx  for the  ear infection is causing him to get sick or he has a stomach virus.  Really hoping he feels better so we can proceed with surgery. 

Love always -
Melissa

Happy Thanksgiving to all.


We just wanted to drop in a quick post letting you know that everything is great in the Smith house and that we have so very much to be thankful for. I won’t go on and on about what we are thankful for however if you want to know you can read my thanksgiving post from 2009. Everything I had written then still holds true today. My family, my wife, my friends, Dr Tweddell, Dr Nancy, Nurse Susie, and our Faith in God. We continue to be thankful daily for all of these.

One thing I wanted to call out this year is how thankful we are to have successfully completed the palliative HLHS procedure for Caden. As you know Caden’s HLHS condition was going to require a three stage palliative procedure to sustain his life and give him the best chance at having one into the future. Here we are 3.5 years later and Caden has successfully come through all with flying colors.

All three surgeries are behind us and we pray that Caden will have nothing serious happen for a long, long time. His risk of mortality has gone down again with the successful completion of the Fontan. For Melissa and I we have come so far in such a relatively short time.

When Caden had his first surgery, he was a mere baby without words or expressions. Also, Caden was our only child so all of our attention was on him. Fast forward 3 years and here is this kid that knows his ABC’s, colors, shapes and has quite the personality. Funny, silly, smart and beautiful. Tender and rough all at the right times. Also, Caden is the big brother to Griffin now. The two are buddies and Griffin follows Caden around emulates him. When Caden gets up in the morning he wants to get Griffin, and when Griffin gets up in the morning, or from a nap, the first thing he wants to do is find Caden. Our boys collectively is what we are most thankful for. That they are happy and together.

For this surgery, just like the last two, our families rallied around us. They came up to sit with us while the surgery took place which was great. My mom was able to stay at our house and care for Griffin while we were at CHW. We are so thankful for all this support and we would have had a very difficult time if we had to go through this without each of you. Thank you and we love you.

I have decided to attach a video clip to this post. It is one that has not been shared with anyone outside of the Smith house. I watch it probably more often then I should but it really captures what Melissa and I are thankful for. This is a video clip taken the day we brought Caden home from the hospital. It is a moment in time where two brothers, who had spent most of their waking hours together, are reunited after 12 days of separation. Melissa and I had not seen Griffin over that time period either however his eyes are locked on Caden and their embrace is precious.

I will leave you with this and stop by saying. Happy Thanksgiving and thank you for being part of our lives and riding this coaster with us. We are at the station for now. Doing well and very thankful.



David, Melissa, Caden and Griffin

June 26, 2012 - Doing fantastic! 3 weeks post Fontan

Life is good.  We have successfully made it through #3 surgery and he is doing great.  We have the meds down, he is managing with his new low fat foods,  and the only thing I feel we have to work on is just letting him heal (his chest incision looks good, his chest tube sites (4) are still scabbing up).  He  still is having some troubles sleeping not sure if it's nightmares or what, hoping to work through this as time goes on.  We are in the process of getting paperwork started for an INR finger-stick to measure coumidin levels instead of regular blood draws to make this weekly process easier.  His last INR (coumidin) level was were it needed to be so they will have us now hold off until our next appointment back in Milwaukee in July.  What have I noticed since surgery - his appetite has increased.  Caden wakes up asking for hot dogs and mustard, or chicken nuggets (his soy ones) hours after a big meal…..and insists on bedtime snacks which seem to be more like meals.  He never did any of this before surgery and although I'm not sure why that is….perhaps the increased oxygen levels help with appetite? Who knows...  I'm also noticing he is starting to talk more in sentences and putting more words together.  I'm sure this has happened gradually but it sure seems like in the last couple of weeks his vocab, sentences, and phrases have increased dramatically.  No matter what the case, we are celebrating  that God is Good, prayer works, and that each day is a gift.

Love,
Melissa

                                   
 Taken 6/26/12 Just hanging out together Griffin (~18 mo) and Caden (3yr)….best buddies.

June 17, 2012: Post surgery appointment

Resilient.  It is amazing to us that just 2 weeks ago Caden had open heart surgery and now he is running.  Truly amazing.  He had his follow-up appointment yesterday and everything went GREAT! His chest x-ray indicated no fluids in the chest cavity, his sodium was up to 136, and his heart function sounded good to Dr. Frommelt.  His oxygen saturation's are now in the low 90's.  Wow…what great numbers to see.  Caden's sats were in the mid-upper 70's before surgery.  Now that his red blood and blue blood are no longer mixing we see a rise in his oxygen sat numbers as well as Caden feeling better (not as fatigued, better color, etc…)

Caden had some redness around his entire incision site it seems it was just a reaction to the steri-strips as it was confined to the space like a ruler down his chest that was bright red.  Unfortunately you can't put anything on it so then he started scratching it so bad a few spots started to break open and bleed.  In time this will get better and look better I'm sure.  His stitches were taken out as well.  

We go back for weekly checks for his coumidin levels but now can resort to a finger prick test instead a blood draw in his arm.  We went to a outpatient clinic near our house last week (after I called to confirm they do pediatric blood draws)  after we got there the gentleman told me he didn't feel confident with his small veins and they didn't carry butterfly needles (which are smaller).  So for those heart families about to embark on this…….ask if they have butterfly needles, and small tubes, and someone trained to do pediatric, hard to find veins. What I was happy about what his honesty.  He didn't attempt, just sent us up to Good Shepard Hospital in Barrington where we had a great experience (as good as it can go) with 3 adults holding him down.  

The other thing we are adjusting to is his diet.  So far we have found some foods he will eat……

Chesse quesadillas with low fat cheese (that doesn't melt)- ekkk, and turkey crumbles that we brown up with taco seasoning.  

Low-fat baked lays chips

Pretzels

Fruit

Grilled cheese with low-fat cheese and Pam cooking spray no butter

Skinny Cow ice cream

Soy Chicken Nuggets 

We are only a few days into this, trying and experimenting, so far we are doing ok.  With an already picker eater we are happy we have had success with these so far.  We have found that "dipping" stuff also helps….BBQ sauce, Ketchup, and Mustard have also become some favorites for him.  After this six week period his body should be able to handle fat easier.  This diet is something that Children's in Wisconsin is doing as they have found it cuts down on the amount of kiddo's developing chyllous post surgery.

Today we celebrate fathers day to my husband, my friend, my rock, and to the best father to our boys Caden and Griffin.  I look forward to the day when I can see David's hard work,  attitude,  values, loyalty, and kind heart in our own boys are they grow older.  Thanks David for all you do!  To all the fathers out there……..thanks for being who you are, what you sacrifice for your families, and how you make a difference in our world today.  Enjoy the day.  You deserve it.

Lots of love - Melissa

 

 Doing great post surgery -Caden 6/17/12 

  

Happy Father's Day (picture taken at hospital before our discharge)

 

  Griffin 16 mo. loving having his brother home.  Playing with dad in the trees.

June 12, 2012 - Home life after Fontan (Doing great!))

Hi everyone…..I thought I would send out a post saying we are doing great, adjusting to being home with Caden and his needs, and just praising God for us to be able to be under one roof again together.   Probably the most challenging things now for us is remembering not to pick Caden up under his arms (to allow the sternum to heal), to keep Griffin off of him (he is prone to jumping all over Caden), and not allow him to eat anything with more than 3 grams of fat (so we have to watch what we also eat in front of Caden).  We will be going for regular blood draws for several weeks to monitor his comidin levels and sodium to make sure these diuretics aren't pushing too much sodium out of his system which is necessary for important body/neurological  functions.  We also have an appointment back up in Milwaukee to get Caden's stitches out of his sternum (very top and bottom), and all the chest tube incision sites as well as listen to his heart function this Friday at 1:00pm

We came home on 5 medications

Aspirin…they just increased his dose
Enalapril (new heart medication) similar to Captipril his old medication but this is only given 2x day
Coumadin (blood thinner)
Spironolact (diuretic)
Lasix (diuretic)

The challenge now is Caden developed a little oral aversion in the hospital as everything he consumed had hidden medication in it for the first several days so meds are a bit more challenging than before and the quantity (even crushed) is a lot even when mixed with food (normally we crush and mix with pears or applesauce).  This hopefully will get easier as time goes on….once he understands we aren't going to ruin his food, like we had to do in the hospital.

I took off the steri strips off his chest today (all except the very top ones).  Caden is definitely red under the strips but it appears to be almost a rash more than an infection.  He has such sensitive skin I'm just going to see what it looks like in the morning.  The chest tube sites are healing, and now everything is just "itchy" to him.  He can't take a bath for 6 weeks, so we just take a quick wash/rinse off/pat dry the incision.

Caden has been monitoring his own activity.  He has been keeping up with Griffin for the most part but last night asked to go to bed at 6:30 and awaits his naps (which he normally dreads) so he is taking it easy.  We were told to lay low, keep him healthy away from anyone sick during these 6-8 weeks post.  Just like the other 2 surgeries.  I'm assuming if you saw him, you wouldn't even notice he has had surgery as he looks great!

Although the surgery is behind us, there are other complications that can occur post Fontan (with his new circulation).  These don't happen immediately so we pray to keep Caden healthy in every way possible.

We want to thank everyone once again for all your prayers, hugs, words of encouragement, big and little things you did for our family. This is how we remain so strong!

Love always - Melissa and David

Fontan Day 11: June 10th 10:45 am

WE ARE GOING HOME!  Yeah……thank you all so much for all your prayers!
Love - The Smiths :-)

Fontan Day 10: June 9th 10:00 am

124.  That was his sodium level this morning after blood draw.  Caden was at 122 yesterday so we are thankful for the small increase but it's not enough to stabilize him for us to go home.  At rounds this morning the doctor's discussed his diuretics/fluid intake/food intake finding a balance etc.  It seems so simple, but yet it's so complex and complicated to find the right combination to help his sodium levels but keep the fluid off his chest.  So we pray for more of an increase in his sodium levels tomorrow so doctor's can see a trend and Caden is stable enough for us to go home soon.

Since we don't have much to report today I wanted to tell everyone about the Beads of Courage.  A program that was started in 2004  by a pediatric nurse who wanted to honor and recognize the journey children go through while battling a serious illness.  The program allows children to tell their story through colorful bead, each recognizing acts of courage, milestones, and achievments along their path.  Now this program is in over 100 children's hospitals.    The beads allow kids to record, tell, and own their own stories of courage.    This program was just started this year thanks to the Wings of Angels Endowment.  We thank Chris and Michelle Buchmann for starting this program.

The beads are beautiful, hand-crafted, and each bead represents something so it is like a journal on a string.  Caden enjoys his beads….thanks again Chris and Michelle for starting this at CHW on 3West.

Love you all - Melissa and David.

The larger glass beads are discharge beads.  The 3 times Caden was discharged from the hospital (a huge milestone)

Wings of Angels Bead, his name, the heart (heart patient), and CICU bead (Cardiac Intensive Care Unit)

                                                 Caden wearing his courage beads.

Fontan Day 9: June 8th 11:30 am (dr. approved)

I just can't help but laugh at this……but as they did rounds this morning the doctors said bring it on…….baked lays…..less than 3 grams of fat, let him dip them in mustard.   Hey….whatever works.  Doctor approved and kid approved.  It's a great day!

Going in for the dip…….

The dip = more sodium = better

 

Less than 3 grams of fat = perfect!

Going in for the mustard/chip bite…..

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 8: June 7 - 1:45pm (more progress)

Caden is having another great day so far.  He had a great x-ray, we went on a couple of walks (in which he is walking farther), and is set to get an EKG and Echo of his heart at 2:30pm.  So far he has kept down a boost drink and some spaghettios.  We are all doing great, having a fantastic day, and we thank all of you for your prayers!

Love to you - 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 7: June 6th 11:30 am(chest tubes out)

Great news.  The team decided to pull the rest of Caden's chest tubes and wires.   This is a great thing as now he will not only feel better, but it should make for easier walking, moving, and pretty much everything.  As many of you commented…..yes, chyllous does stink.  He did still have chyllous but the rationale was that he body will absorb the rest.  Doctor Russell said chyllous can just happen because of the difference in pressures in his body from this Fontan surgery.  Doctor's said if for some reason x-ray tomorrow morning looks cloudy that means his body isn't absorbing it, or it is too much they will have to put another tube in to drain the fluid out of his chest cavity.  However, that tube would be much smaller, and more flexible than the ones that were in before.  So we pray to stay on this path of great news……minimal chyllous that his body can control.  Caden is still sleeping from the versed/codeine/ketamine.  He wasn't asleep enough with versed so they had to give ketamine shots in both legs to put him out since he didn't have a line to administer the drugs.  Bummer, but the good news is when he wakes up he should feel so much better with his new tube-free body.  On another happy note….my mother-in-law Sue skyped us today to we were able to see our boy Griffin.  So good to see you little boy!  I miss you.  We will be home soon.

Love always - Melissa and David

Sleeping off the Sedation from taking the tubes out

Fontan Day 6: June 5, 9:30 pm (Chyllous)

Caden continues to get a little stronger each day.  He is talking a bit more and itching his hands and feet asking for cream (for his eczema) now I know our boy is starting to return!!  He went on a couple of great walks which also included one of our favorite nurses Suzie. We even took the wagon outside to enjoy the beautiful sunshine.  Caden still needs frequent breaks where he leans on daddy and supports himself to regain his strength.  I watch him and it really is amazing how strong he is and far he has come in just a few days.  I love how determined he is at playing hide and seek with farm animals up and down the halls with nurse Suzie.  Turning this into a fun little way to encourage him to walk.  Caden's appetite hasn't really returned yet, just consuming a vanilla boost (since we can no longer give pediasure because it has too much fat), and a small serving of spagettios which he didn't keep down.  The dietician met with us today to go over Caden's new diet for 6 weeks.  All I can say is feeding a toddler 3 grams or less of fat really stinks.   Physical Therapy also came to work with Caden to again help get him out of bed and encourage movement which at times Caden is resistant against saying he wants to just lay in bed.  So, all in all we have had a good day.  I realize David is exhausted as he is the one staying in the hospital with Caden at his bedside.  Since last night consisted of multiple people entering the room trying to find a line, lots of crying, consoling etc it makes for even longer days for him.  Anyone who has experienecd hospital life realizes there isn't such a thing as sleep in the hospital no matter what they provide for comfort for family members.  I am so blessed to have a wonderful husband who looks after our boy at night while I can sleep so I can try to be there for him during the day. I love him so much - Thanks David.  Each day emotionally is so draining too.   We witness some really hard things each day that really make us stop and think about our life, our boy, and our blessings.  We have families on our floor waiting for hearts, families who have lost their child, and families going down the same path we are.  I'm fortunate to have David to lean on. He provides that hug, the right words, or the comic relief, to get me to a better place mentally.   I am also very thankful we saw a few smiles today (thanks to all our prayers they are working).  It really is amazing how a smile can make your day.  The only prayer request is to pray for now for Caden is good news for Caden's drainage tubes at rounds tomorrow morning.  This afternoon Caden started to show a milky, white, creamy color out of his tubes indicating chyllous.  I just ask for prayers for good news to continue with Caden's progress so far, and the chyllous is under control so we are able to take the tubes out.  The doctor plans on checking Caden around 2am for  his chyllous status to see what the next course of action will be.

Again, thanks to all of you for your love and support.
Love Melissa and David

  Going for a litte walk to get stronger…..

  Fresh air and sunshine

  Wonderful Nurse Suzie and our boy!

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

Fontan Day 4: June 3, 6:00 pm (Took a few steps)

So I feel we have gotten rid of the awful steroid medication out of his little body, Caden is calm, back to himself minus talking, eating, and being active.  Caden is very tired.  I can't imagine what it would feel like to have open heart, start recovery, open the chest again for more surgery, recover, hallucinations for almost a day, then recover.  So I think I will chalk this up as DAY 1 recovery for the Fontan for Caden.  He deserves a day to not want to talk, lay around, and just chill out.  He has had a good day all day.  Physical Therapy came by around noon and they had Caden sit at the edge of the bed.  After he seemed to have his balance we lifted him down to the ground to allowed him to try and take a few steps.  This is a difficult task as he is connected to drainage tubes, IV's, oxygen etc…….but he did it!  After seeing Caden yesterday this is a HUGE victory for us and we couldn't be more proud.  Later in the afternoon he sat on dad's lap and watched the movie Cars (see picture).  It was so great to see him like this.  The biggest challenge is remembering he can not be lifted under the arms (or the chest stitches will come apart) so we scoop him up, but while scooping we also have to also watch the tubes coming out of his stomach.  Caden is sleeping right now.  He seems comfortable, isn't taking anything but tylenol, ibuprofen, lasix (to help those drainage tubes dry up), and his afterload medication for his heart.  We are praying to get out his central line soon (in his neck), and hope for the pleural tubes to be removed Monday or Tuesday (these from what I have heard from nurses taking care of adult cardiac patients are the most painful as every breath and step you take affect these tubes.

We are so thankful for today.  We are thankful for all of you who pray for not only Caden, but for us to   stay strong for him.  We are also thankful for our wonderful family and friends who are helping us in so many ways.  You know who you are and what you are doing - thanks!  We are so lucky to have you.

Love to you - Melissa and David

  Dad enjoying holding his brave boy 

  Caden's room 323

Fontan Day 4: June 3, 9:30 am (Medial Tubes out)

Yeah…..good news.  Caden got two medial tubes pulled out.  The tubes right in the middle. He now only has his pleural tubes in (the two tubes farthest from the incision site). Dr. Russell administered profonol as we did not want to give any more narcotic drugs seeing what has happened in the last couple of days.  Profonol works quick, and isn't a narcotic drug.  David and I stayed in the room and watched P.A. Mike take the tubes out, stitch him closed, and put new dressing on his pleural tubes.  Caden is sleeping right now and we are hoping now he can sleep (not drug induced sleep).  Dr. Russell felt the throat steroids might have been causing the hallucinations, erratic behavior but was masked by all the narcotics given from this 2 surgeries.  So once the narcotics were weaned (yesterday) that is why the erratic behavior/hallucinations came out in full force by mid afternoon.  He needed that steroid to help his airway after surgery because he  struggling breathing after surgery from a combination of being extabated during surgery (breathing tube), in conjuntion with his vocal cord issues.  We will remember next time IV steroids = the devil!

Fontan Day 4: June 3 8:00 am

Caden is making a little progress.  He seems more calm, however we will evaluate this more as the day goes on.  He threw up bile last night several times so they did an x-ray of this bowels.  They put him on anti-naseua medication to help Caden out.  P.A Mike is looking to take out a tube(s) after they evaluate Caden.   Your prayers are working. Thanks so much. We will post more later.

Love,
Melissa and David

Fontan Day 3: June 2, 7:15 pm

All Caden's blog readers…..if we could ask for one special prayer request.  Please pray for Caden to return to his normal self.  He is experiencing something doctors suspect could be steroid psychosis or something triggered by a combination of medications.   Caden is having hallucinations, erratic behavior, and is very confused.

Much love - Melissa and David

Fontan Day 3: June 2 3:30 pm

The rollercoaster continues……as other heart families are reading this they know all too well for every two steps forward you take, there seems to be another one back.  Caden had a great morning and although he was still out of it, we thought with time he would get all these pain drugs out of his system.  He threw up (which is normal), and around 2:30pm he started to really not act himself.  Screaming, confused, out of it, not really understanding what was going on.  They ordered a CT scan and to check for stroke, or other complications.  Although Dr. Russell and Dr. Nancy believe what is going on is just adverse reactions of all the meds from the surgeries and post-care.  So, they had to give another dose of versed to take the edge off so he wouldn't pull all his tubes out.  It was taking two people to hold him down and was not fun to watch him like this.  So we wait again….for his eyes to open, or him to be off these nasty meds.   We are just giving Tylenol and Ibuprofen (since early this AM) so we are hoping by Sunday morning he will be himself, back to wanting popsicles, and opening those eyes again.

Sidenote:  The RMH is still wonderful as ever. We don't spend much time there and I am the  only one staying there as hospital sleeping is near impossible for me.  David is sleeping (or trying to) at the hospital each night.  I take the RMH van back to the RMH house each night so I don't have to walk late at night back by myself  and so  David can be with Caden.  One of us are always here with him, and often it take two to of us to comfort him.  This house is the most amazing thing ever!  Although I don't wish anyone to have to be there, I wished more people knew about the kindness they offer so many families.   Especially when you need to wash throw up off your clothes.  It truly is a home away from home.

We pray for these drugs to be completely cleared from his body so he can get back to himself.

Love always - Melissa

Fontan Day 3: June 2 11:00 am

Rounds just finished.  Good news.  Caden's foley (catheter) has been removed, his aterial line was removed, turned off the milranone and lasix and now we are giving Enalapril (by mouth) which is like captipril but only given 2x a day instead of captipril which is given 3x a day, and Spironolactone (sp) which is a drug similar to lasix.  They are discontinuing his steroid for his throat, they now have him on a reduced liquid diet (this helps dry up the pleural spaces in his chest).  He has now eaten 3 popsicles (which he loves), and has had about 30 cc's (one ounce) of ice chips.  Making great progress this morning.

We now pray to get out his Central line out (in his neck) that his antibiotics are going through leftover from surgery to prevent infection for 48 hours and we pray to be able to remove his medial tubes (2 tubes in the middle).  We also pray to have normal PVC's (ventricle is contracting before it should).  Doctor's don't seem too concerned at this point (as the PVC's aren't back to back), but it is just something they are monitoring.

Thanks again for all your thoughts and prayers. God is good!
Love Melissa and David

Fontan Day 3: June 2nd 8:30 am

Caden had a better night last night.  He was up every 2-3 hours or so but I can tell you it was much better than the night before.    He is still on a steady administration of morphine and versed so when he is up it is not for that long.  I hold his hand and rub his head and he zonks out again..  When he gets up he wants to sit up and pull off his oxygen mask which we all worked together to not allow him to do. For someone who is still a bit out of it he moves pretty quickly!

This morning they allowed me to feed him ice chips which he really enjoyed.  I actually could not get them in fast enough and it was kind of a game trying to make the ice chips fit in through the holes of the penguin oxygen mask.  This morning was the first time where he looked at me and said Daddy.  He was so out of it in the past I don't think he knew who I was.  I was also able to get a kiss from Caden this morning which absolutely kicked the day off to a great start.  Mommy was able to get kiss this morning as well which I captured on video and will try and post. At one point in the clip Caden looks directly at the camera so we call can see his beautiful eyes.  I was so happy to see Caden kiss Melissa this morning.  Both of them have been through so much the last couple of days (longer for Melissa).... They are both so strong and I continue to be impressed by Melissa's focus and strength in the face of adversity.

Yesterday the doctors removed the LA line.  Also, the chest xray from 4 am this morning looks good.  There doesn't appear to be any more gathering of fluid.  The chest tubes are working well with the anticipated amount of draining yet we don't anticipate removing any of them till Monday.  Today he may have his Foley removed which is good sign because he is urinating with enough regularity (meaning processing fluids) to where they do not need to track it anymore. His Central Venus Pressure (CVP) is a bit higher than they would like to see but it could reduce itself over the next couple of days (pray).

Today Caden may get to try a Popsicle.  I know he will enjoy it.  The only question is, will he share with Dad?.  His poor little throat has to be so sore from the two intubations in the last two days the icy flavor will feel good!

Melissa and I are humbled by the support we are receiving from all of you.  Your willingness to pray with us means the world to us.  I believe we are turning the corner to recovery with Caden because of God hearing our collective prayers.  Please keep them coming.

Your friends.

DMC&G

Fontan Day 2: June 1st 8:30 pm

Hi everyone ~ thanks for checking on Caden, praying for Caden, and being there supporting us.  This again was a rough day knowing they had to do more surgery, go back through the sternal incision to collect that blood mass, but hopefully now we are on our road to recovery.  He is on a steady dose of morphine and versed which now isn't allowing him to really "feel" his pain; however,  I like that he is off ketamine and his dex drip which again I feel made him sorta crazy, out of sorts, confused etc.  It is a fine balance with these pain meds.  You don't want him so out of it, but yet you don't want to see him in pain. At least these last few hours he seems to be more content, he is opening his eyes (at times), and I actually heard him say "momma".  This might have been prompted by the fact I was trying to pull strings of dried saliva out of his mouth before applying some chapstick to his poor chapped lips which I'm sure he did not like.  Nonetheless, I'm happy I heard him speak a word.  Caden is NOT a fan of the oxygen mask.  He pulls it off along with many of the other things taped to his skin, forehead, and arms. Let's also pray for a decrease of drainage in his tubes.  This will allow nurses to pull the tubes out which is very uncomfortable for Caden.  Let's pray for a comfortable night's sleep with the right combination of medication to take the pain away.  Let's pray for easier breathing.  He is still getting steriods for his throat and is on 7 liters of 100% oxygen. 

As I am typing….sitting by Caden's bedside, he just sat up. Obviously in pain, confused, probably wondering where he is at, and what is wrong with him, but the nurses told him to lay back down.  

One day at a time…….slow recovery to get our boy back home to his brother.  

Love - Melissa and David

Fontan Day 3: June 1 3:50 PM

Caden is out of surgery (again).  Melissa, myself and g-pa Fred stood in the hallway waiting for him to go by.  He looks "good" and he sounds great.  They removed 20+ cc's of a hematoma.  Melissa and I just talked with Dr. Tweddell and our PA Mike (happy birthday Mike) and they said it went great and they feel like the made a great decision in going back in versus waiting to see if it would take care of itself.

I pray that Caden stays restful the rest of the day and throughout the night.  I pray i see more smiles from his mother than tears.  I pray that we turn the corner and hope beats out fear.  I pray for a speedy recovery.  Please join me.

Day 2 Fontan: June 1st 2pm

The nurses took Caden to surgery at around 1PM.  It was very difficult handing over Caden yesterday and then just as much so today. The bright side of today is that even though they re-open the chest it is not considered open heart surgery as they will not be disturbing any of the vessels of the heart.  Dr. Tweddell will explore around but wont spend to much time and has no inclination of finding anything else.  They plan to get him in and get him out as quickly as appropriate.  Pray there are no complications please.

One bit of good news is that we received a call from Ronald McDonald house that a room has come available.  God works in funny ways….  Melissa and I walked over for another orientation.  We were very happy to see that Melissa and Caden's picture is still hanging on the wall there.  When things settle down a bit I will share some of our thoughts around being in the CICU again and what it feels like to be at RMH again.

We will update you soon.  Please keep the prayers coming.

DMC&G

Day 2 Fontan: June 1st 10:45 AM

Dr Tweddell and team are getting ready to go back in to clear out the blood.  This will also give them a chance to look around and see how the work they have done has started to heal.  While this is a set back we are confident that God will bring us through this next hurdle on the road to recovery.    Our boy is in so much pain at times and we struggle to keep him comfortable.  I cant wait to see his beautiful eyes again.
 Pray with us that they are able to get through the sternum (again) without issue and find the blood collection, safely remove it, and close again without issue.  Thank you in advance…

Day 2 Fontan: June 1st 10AM

As Melissa indicated Caden had a rough night.  He was up ever half hour to an hour and is unfortunately receiving a lot of morphine to stay controlled.
This morning they saw some shading on the left side of his chest which isnt good. One of the PA's just came in to replace the chest tube and do some irrigation while he was in there.  Changing a chest tube is a process that is very violent.  I dont recommend watching it being done.  The goal of the irrigation is to clean out the hematoma (collection of blood).  His blood count is good so that could mean he is not still bleeding inside.  Problem is he has that collection of blood inside of the chest that we need out.  We are awaiting another chest x-ray to see if the PA was successful.  If not, Dr. Tweddell and team may have to go back in there which means we will start from scratch on the healing and more risk..

Please pray for Caden and that the PA was successful able to clear out the blood clotting.  Please God!

Day 2 Fontan : June 1st 8:30 am Abnormal X-ray

Caden had a rough night, was given morphine to comfort him.  At the 4:30am x-ray they noticed something that looked like a blood clot on the left lung area.  They came in and took another x-ray at 8:00 am and they believe it is a hematoma (blood clot).  Caden is also running a fever.  The purpose of the drain tubes is to remove the fluids from the lung/ heart area.  They are going to administer profonol and  P.A Mike is going to push the drain tube up farther in his chest to see if more of the liquid drains out.  They are giving lasix to get rid of the extra fluid (which has worked for the right side of the lung),  and has worked for some areas on the left, but not everything like they would like.  The profonol will sedate him entirely so he won't feel the pain, he will go to sleep, Mike will move the tubes hoping for drainage.  They removed him from the ketamine and dex drip.  Dr. Russell said after a period of time its good to get him off these meds and it can make Caden confused and scared so they now are using versed and morphine for pain.  We will update more after the procedure.  They are about to begin.

Here is our strong little boy.  You can see the sternal scar bandaged up, he has 4 drainage tubes, and in this picture (from last night) he was getting red blood cells (leftover from the by-pass machine during surgery.  That is the tube on the right going into his IV into his hand. They had to use blood because he was under 30 pounds and they needed extra fluid while he was on the by-pass machine.

These are Caden's Drainage Tubes.  On the left are the pleural tubes which in the picture are the outside two (very left, and very right), the right collection container are his media stinal tubes.  These collect/pull blood away from  his heart cavity. 

Caden has 2 pacer wires inserted right under the skin (blue lines with yellow caps).  These help regulate his heart should there be a rhythm issue with his heart.

6:30 Update

Hi everyone…..well we are settled into our room #323.  Caden struggled with breathing, laboring hard and is pretty uncomfortable so they are going to keep him sedated all night.  Dr. Nancy gave us strict instructions not to love on him, talk to him etc……and just let him be (insert sad tear here).  He looks good considering, and his drainage tube output is normal at this time.  Right now he is on a Helium/oxygen mix (I was told lighter than room air so it's easier for breathing), Milranone (afterload reducer….makes the heart work better), Epinepherine (weaned off, makes heart beat stronger), Dex (for sedation/anxiety), Ketamine (for sedation/pain), IV fluids, and they are going to give a steroid to open his throat/airways to also help with his breathing. David is going to stay overnight with Caden tonight and I'm heading to a hotel to try and get some sleep.  The days ahead are going to be really rough (as we got a tiny glimpse of this before they sedated him again).  Again, David and I are so appreciative of all of you who joined us today.  Your prayers, thoughts, emails, messages mean the world to us.

Love you all - Melissa and David