Discharged

I'm sorry I haven't been the best at updates here.  Not sure if many follow the blog as I know most follow on Facebook.

Will try to fill in some gaps soon, but for now wanted to let you know Mitchell was discharged this afternoon.  We are settled at the hotel and looking forward to a good nights' sleep.

Overall, everything looks good.  He will continue with 3 diuretics for now as well as aspirin daily and pain medications as needed.  Anticipate not needing all of them long; and hopefully able to return to no need for routine diuretics long-term.  Expected the need short-term as he adjusts to more blood volume to his lungs.

Thank you again for your love and support!

❤️

Post-op Day 4

Apparently, I forgot to submit this morning's post.  I guess that's ok because things have taken a surprising turn.  

Will try to summarize-  been watching a couple things- chest tube drainage and his underlying heart rate and rhythm as he was being paced by an external pacemaker via wires attached during surgery.

Mitchell has handled everything very well, but began to get a little concerned about anyone's reason to be in his room and if it would hurt.

Yesterday they were able to discontinue 1 chest tube that wasn't draining much.  The 2nd had an output of 400 ml on post-op day 2 and 300 ml on day 3.  Because of this we anticipated a few more days to maintain fluid balance.  Too soon to say for sure, but after the 300 ml ahift end at 0700 today (130 ml of which was from night shift) Mitchell has now gone 7 hours today with only 10 ml of drainage.  Anticipate chest tube #2 it will be removed tomorrow.

Dr. Kanter rounded today around 1 p.m. & turned off his pacemaker- his rate is holding in the 90's and regular.  He is still attached to the pacemaker, but at a setting of 80 (if his rate would drop, it would pick up). 

Progressing quicker than we imagined.  He was told if everything continues the same HE CAN GO HOME TOMORROW! 🎉

So thankful for a smooth recovery this far.  

Will attach a couple photos after M received his happy news. 

Moved to Step Down

We are thankful Mitchell moved to step down 24 hours post-op.  He is doing well.  Will be working on managing pain- need to start eating and switch from Morphine to Lortab.  Also gets an anti-inflammatory every 6 hours.  Chest tube output has been about 200 ml each 12 hour shift for the last 24 hours.  That is anticipated with the Fontan.  His length of stay will be determined by how long they are needed- really can vary.  His underlying rhythm has returned to a junctional rhythm (not uncommon with this big surgery), so we will look for a return to a regular sinus rhythm and appropriate rate to discontinue the external pacer wires.

Overall, Mitchell has done wonderfully.  And we are very thankful.  Thank you for your love and support! ❤️

Surgery complete!

Surgery is done!!  Lots of scar tissue, but everything went well once started.  Pressures in lungs low (good) for passive blood flow.  We should be able to see him within an hour. ❤️

Thank you all for your prayers and support!

3rd Update

Been on bypass about an hour.  Going as expected.  Traditional Fontan not Y graft due to pulmonary stent.  

2nd Update

2nd update- still working through scar tissue.  Almost ready to go on bypass.

Specific Request- procedure

Specific Request- this surgery is the Fontan.  Short version- attachment of Inferior Vena Cava will provide more passive blood flow to the lungs= more oxygen.

Praying they can do the Y-Fontan vs. traditional Fontan that would divide the blood flow and lessen the pressure of blood flow (hopefully minimizing complications from the high pressures).

The stent in his Left Pulmonary Artery makes it more complicated for the Y procedure.  To be determined in the OR.

Thankful for Mitchell's surgeon and his ability to determine what is best.

Surgery Update

1st update-  

Went to sleep without any difficulty.

Incision made about 10 minutes ago.

Next update 1 - 1 1/2 hours.

Appreciate all of the prayers! ❤️

Mitchell is in the OR being prepped for surgery.

Anticipate hourly updates.  Thankful for sleepy meds before he had to go; and his iPod full of songs from Uncle Scott! #HeisAble ❤️

Surgery 7:30 a.m. Friday

Thank you for praying for Mitchell & his surgery! ❤️

1 Day Delay

Pre-op is now Thursday, 1/7 with surgery Friday, 1/8.

New Surgery Date for Mitchell

Mitchell's surgery is scheduled for January 7th with pre-op on January 6th.

Thankful for an excellent location for Mitchell's care.  They happen to be very busy right now.  Praying for the children in CICU at Children's Healthcare of Atlanta. ❤️

Surgery Canceled

Thinking of the staff and children at CHOA.  Right now the CICU is full, & many children are awaiting transplant.

Mitchell's surgery has been tentatively re-scheduled for 12/11/15.  Will update once confirmed.

Appreciate your continued prayers.

Surgery Scheduled 12/8/15

We will be heading to Atlanta on December 6th.  Pre-op will be Monday morning at 8 a.m. with surgery on December 8th.  Will post time once we have it- likely not until 12/7.

We are thankful for his surgeon, Dr. Kirk Kanter at Children's Healthcare of Atlanta.  He is very experienced with HLHS.  This Open Heart Surgery will be his 3rd, the Fontan, to supply more passive blood flow to his lungs.

Thank you for your prayers & support.

Will update as we have more information.

Pensacola Cardiology Appointment

Mitchell's local cardiologist will see him September 17th to follow-up from his cath & discuss plan for surgery.  

Tentatively, she said "probably within 6 months" (by February), but plan to discuss benefit/risk as his sats were 87% post cath.  Dilating the stent in his pulmonary artery seems to have improved his saturation.  The benefit of waiting would be delaying potential post-Fontan complications, but he would require another heart cath.  We will do whatever she and his Atlanta team feel is best for him.

Thank you for your thoughts & prayers! ❤️

Discharged!

Mitchell's cath went very well.  He received diagnostic clearance for the Fontan procedure, and the stent in his pulmonary artery was dilated from 8mm to 10mm.

Atlanta will correspond with Pensacola and decide on a plan of action.  Ready for surgery, but could we wait? Reasoning for waiting is complications that can develop post-Fontan because of the compromised circulation (specifically related to the increased pressures to the liver).

They have care conferences on Mondays and will discuss Mitchell after speaking to his Cardiologist at home.  Will keep you posted as we know more.

This heart Cath will serve as diagnostic for surgery for up to 6 months.

Thank you for coming, Bob & Carolyn!

Back in room and doing well!

Back in room and doing well.  Still waiting for report from his doctor.

Cath finished!

Nurse said he did well.  We left for a minute for them to bring him back and get settled.  Waiting for report from his doctor; and we should be back to his room before he is really awake.

Diagnostic Complete; Dilating Stent

Nurse update- Mitchell is doing well.  They just completed the diagnostic part of the Cath and are now ballooning the stent in his pulmonary artery.

Back to the Cath Lab 8:15 EST

Mitchell just went back to the Cath lab.  The staff here at CHOA has been amazing.  We utilized his G tube for the first time in a very long time for some pre-meds; so he went back relaxed.  He did want mommy to come with him 😪, but the nurse came back and said how great he did.  He is asleep now, and I'm guessing they have started.  He's in good hands with the Director of Interventional Cardiology.  And my sweet sister reminded me that Jesus is with him. ❤️

The plan is diagnostic in preparation for his next surgery; and they may be able to dilate the stent in his left pulmonary artery.  If there are numerous collateral vessels, they will coil those as well.

Appreciate everyone praying for Mitchell right now.

Thank you!