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 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 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 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

4:00 Update

Got to see our boy as he was being wheeled to his room.  We are so excited to see he was off the ventilator and breathing on his own (although he didn't sound good, it was very labored, and he seemed to be struggling).  The doctors said this was "normal" post operative noise some being from the pressure of the chest tubes which are HUGE.   I sure don't remember them being that big from the other 2 surgeries.  They said it would be another hour before we can see him in the room.  He was sedated so we will find out more about medications, his pain relief, and expectations in the next several hours.  We are approaching the 8 hour mark, we are tired, and emotionally drained.  We were hoping to get into the Ronald McDonald Home but sadly they didn't have an opening like they anticipated so the game plan will be to have someone stay with Caden round the clock while we rotate staying at a hotel(s). Not sure yet…..we will figure that out as the days go on.  All I know is there has been very limited sleep these last few days, and we had to leave at 4:30 am to make check-in so it's been exhausting…..and it's only 4:00pm.  I guess it's hard to complain after watching what Caden just went through today……he is one tough little boy!

2:30 Update

Dr. Tweddell came out to talk to David and I. He said surgery went great, they are wrapping up and we are hoping to see him wheel by in the next 30 minutes.  They will have to prepare the room for him before we will be able to go in and see him.

2PM Update

The repair is finished and all looks well right now. Thank GOD!.  There was limited bleeding that they addressed.  The echo looks good so they are beginning to close up Cadens chest.  Dr. Tweddell, while he was in there, addressed the tricuspid valve regurgitation by adding a stitch.  Everything seems to have gone to plan so far and we are overwhelmed with all the support and just the events of the day.

We received a really great visit from our friend Nurse Suzie.  She informed us that she has dropped her other cases to pick up Caden.  What this means is Caden will be cared for by one of the same nurses that cared for him after the Norwood and the Glenn.  Between Nurse Suzie and Dr. Nancy, Caden will be in the best hands possible.

We are now praying that Caden comes out of surgery off the ventilator.  We will update again soon.

David

1:00 Update

Dr. Tweddell has finished his surgery, they have removed him from the heart by-pass machine.  They are going to take some pictures (echo) and if all looks good and they are happy they will close his chest up.

12:00 Update

Dr. Tweddell has now started surgery.  He extended the inferior vena cava using gortex conduit tubing.  This tubing is now being connected into the Pulmonary Artery.

11:00 Update

Still working on separating the scar tissue from the sternum.

10:00 am Update

The PA successfully cut through the sternum and separated the scar tissue from the sternum. Caden will shortly be put on the heart-lung by-pass machine.   Dr. Tweddell will be starting his work soon.  All is going well so far.  Your prayers are working…..thanks!

9:00 am Surgery day

We arrived at 6:30AM to CHW as scheduled.  They took us all back to the pre-op area.  Caden, Melissa and I had some time to spend with each other while the Dr's and Nurses, that will be in the OR, came in to talk to us and ask us any questions.  The grandma's and grandpa's also got a chance to see Caden before they started sedation.

Versed (sp?) is the drug that they use first.  They call it silly juice as the kids get silly and start to fall asleep.  They said it tastes like bubble gum but by the look on Caden's, it tasted nothing like gum.  The nurses came and took Caden at 7:30 and carried him through a set of double doors…...  Handing over our boy was very difficult…

Dr. Tweddell and the PA came out to talk to us at 8:45.  This means they are ready to start working.  They will place all the lines, have the heart bypass machine ready, and start opening the chest.  This hour we are praying that the PA successfully gets through the sternum and the scar tissue without issue.  Please pray with us.

We will be getting updates from the OR nurse every hour on the hour so we will keep you posted through out the day.  Thank you for your support and Prayers.

DMC&G

Here we go...

Well it is finally here. Fontan time. Each day as we get closer, the emotional rollercoaster has more ups and downs. I honestly don’t know what to post out here as there are so many different emotions we are dealing with.. We are leaning on God and each other. We are ready and we appreciate all the support we receive. It is hard to believe that three plus years ago we started this journey. Always praying we would get to this this milestone. We have been so incredibly blessed and we ask that you continue to pray with/for Caden.


Please pray that God works through Dr. Tweddell on Thursday and that the surgery is successful. Pray Caden fights hard to have his body accept his new passive blood flow. That he comes back from surgery not on the ventilator. We pray for no Plural Effusion or PLE. Please pray for Melissa and I to be strong in the face of Caden. Pray that we get to nurse him back to the little boy we love. That Caden is able to return home to his brother Griffin who will be missing him terribly.

Your friends.

David and Melissa
p.s. the above picture was taken during some of the pre-op testing today as CHW.  Caden was a tough guy (as he says when he makes muscles) today.

The Fontan operation will complete the 3 stage palliative procedure commonly referred to as the Norwood for Caden. The surgical procedure is to disconnect the inferior vena cava from the right atrium (RA). Then using a synthetic tube the inferior vena cava is extended and attached directly to the pulmonary artery. [In the Glenn (2nd stage) the BT Shunt was removed and the superior vena cava was attached to the pulmonary artery.] Dr. Tweddell also performs a fenestration between the RA and the inferior vena cava. This fenestration will act as a release for blood that may want to back up while Cadens body figures out its new blood flow. Eventually the fenestration will be closed. The fenestration will also help reduce/eliminate the plural effusion these HLHS kids can experience. The result of this surgery, in its simplest form, should be that Caden’s O2sats should go up from their current level of 79 to the low 90 to mid 90’s (eventually) which is the goal Dr. Norwood envisioned when developing the procedure back in the 80’s. Pray we get there.