Cooper's 5

Happy 5th Birthday to Cooper!  He's a whole hand now!!!  I'm so proud of what a big boy he has been this summer.  He's gone from my child that always pushed my buttons to an easy- going, helper.  I've received many compliments about his behavior and that makes me one proud mommy.  He still, and always will be, my child that wears the same outfit day in and day out (Red Sox shirt that is 2 sizes too small, faded, and stretched at the neck; one pair of socks that have baseballs on them) and doesn't care a bit about brushing his wild bed hair.  He is very athletic and can play just as good as the big boys... but at the end of the day, little at heart, sleeping with 4 blankies.
The nurses came to me yesterday evening, knowing today is his birthday, and tried to talk me into staying at home all day to celebrate him.  They reassured me that Caleb would be fine, that they love taking care of him and getting snuggle time, and would let him go on field trips to the nurse's station.  I was hesitant, but after I told Cooper, he was elated and started planning his day.
We had the best day being "normal".  We went to the park with friends, had cupcakes, and watched the kids enjoy playing together.  These are the days I get sad that school is about to restart.  I miss watching them all play, chasing each other up and down the slides, and push each other on the swing.  We left there and went to a snowcone food truck to cool down.  The rest of the day we just enjoyed being together.  We read lots of books, practiced math facts (probably should've done this all summer!), celebrated another friend's birthday, and ate brownies after dinner!

Adjusting to being off Meds can be Rough

Caleb has been having tremors that started Saturday night.  He's also spit up a couple of times.  The suspect is that he is having withdrawal from the sedation meds that he was on post surgery.   He is at an increased risk because he was on them for a longer time because of the longer length of time he was on the ventilator, as well as he was on them multiple times due to two surgeries so close together.  They are treating this by giving him meds Adavan and Methadone and will slowly taper them off.  He had his last chest tube pulled this morning.  Yippea!  He feels much better and is moving that side of his body more than he did while it was in.  He did have a set back today.  He had blood in his stools.  We had this issue a couple of times interstage and it is no fun.  They have to hold feeds for 24 hours and run all sorts of tests.  The Occupational and Physical Therapists came and assessed him and said he looks almost the same as before surgery which is great.  He still has work on his neck muscles which goes along with his head shape.  He's also needing to work on using both hands.  We suspect both will develop quickly now that the chest tube is out and able to move around.  He will continue on sternal precautions until 6 weeks post surgery (meaning he can't have any form of tummy time).  Dr. Mettler came by and was very pleased with how he looks and progressed since the surgery.

God has given Caleb's surgeon such a miraculous talent.  We are so thankful for him.  I pray my children use the gifts they were blessed with, to glorify God, like he has.

Back to the Floor

Whirlwind couple of days.  Caleb was extubated yesterday morning around 2 am.  Mid morning, when I was holding his hand and talking to him, he opened his eyes for me for the first time and smiled.  I couldn't, and didn't try, to hold back the tears.  It was his little way of telling me he was going to get through this.  He was put on VapoTherm after extubation, but was weaned off that to oxygen via nasal canula by midday.  They pulled one of his two chest tubes yesterday afternoon.  His feeds were started yesterday, continuously, and over the pump, but not at the calorie he was at pre- surgery.  He has a tremendous headache all of the time due to the way the blood is pushed to his head.  He is his typically easygoing self unless agitated and then he becomes a spitfire!  Due to the extra blood flow to his head, when he gets mad, he turns every bold color and has actually popped capillaries on his forehead.  He looks great and has lost a lot of fluid, but still has a good bit of edema which causes his profusion of blood to be somewhat poor.  This will get better as he continues to lose the fluid.  His weight the day of surgery was 5.77 kilos and today it is 6.417.  He had an unexplainable eye crossing episode yesterday.  Neuro came and witnessed, while trying to rule out seizure activity.  They are continuing to monitor. His pacer wires and RA line were pulled this morning.  We were pleasantly surprised during rounds when they bed boarded him!  We were moved up to the floor this afternoon and he's rested since.

Successful C Papps

Today was another day in the right direction.  He successfully came off the nitric oxide overnight.  He was very negative in fluid loss yesterday and today.  He still has a lot more to go, but his nose and ears are at least visible now!  His abdominal area is still very large.  His blood pressure went up so they added nipride which successfully stabilized it. He did c Papp trials and was successful in all.  These are exercises that get him ready, and test if he's ready, for extubation from the ventilator.  Goal is to get him off it in the morning.  Glenn babies really need to get off it soon because their passive blood flow does better.  Prayers for successful extubation.

I think he should be earning points / dollars towards school tuition through all of this (kind of like "Hilton points")!  

Zack sent me this pic of the kids entertaining themselves by forming a rock band.

Day 3 Post Op

Today was a steady day.  Caleb is still extremely swollen and needs to get the fluid off.  The lasix is working on that; however, he can't be pushed too fast, or it throws off his stats.  Right now, they are weaning him off the nitric oxide and he is tolerating it.  Plans for overnight are to slowly wean his rate on the ventilator with possibly of Cpap trials tomorrow.  He needs to get off the vent as soon as he can; however, it would be hard for him to breathe with all the fluid on him.  He is taking breaths on his own (over the vent), so that is a great sign.  The line in his neck was taken out today.  The cardiologist said, "He is not in the clear by any means, but today is better than yesterday."  We'll take that!

2nd Day Post Op- Rocky

Caleb required a lot of fluid resuscitation overnight in order to keep his pressures up.  This morning he was unbelievably huge from swelling- actually more so than they typically see post surgery.  Today he settled out and they were trying to get some of the extra fluids off with lasix.  This evening, actually not long after Daddy left- of course- he started dropping his oxygen satts and stayed in the low 60's.  His body temperature dropped to 94.1 and his heart rate went below 100.  They have been working all evening trying to get all three increased.  They gave him a blood transfusion and he is satting mid 70's right now.  He is on a bear hugger warmer to get his body temp up which will hopefully increase his heart rate.  He's had multiple PVC's  (different heartbeat) so they've been tweaking his minerals (calcium, magnesium, potassium).  Please pray for the little (well, actually huge) guy to stabilize so they can continue to try to get the fluids off.

Out of Surgery-up next- Recovery

Caleb came through his open heart surgery successfully.  He is now a "Glenn" baby.  He was taken back a little before 7:00 a.m. and his surgeon walked out around 1:30 to tell us he was finished with his part.  He had actually finished an hour before, but was concerned with his coloring (he is very blue) and had the cardiologist come down and do an echo on him.  Everything looked good, so he suspects that it is due to having the surgery early and will level out over time.  We waited an hour before going upstairs to the PCICU to see him; however, after that hour they said they needed another hour, and then after that, needed another hour.  I was getting very concerned (well, let's be honest, scared).  The doctor and nurse practitioner came out and talked with us, thankfully, and explained what was going on and how he needed more time to stabilize.  He was, and still is, needing more oxygen as well as nitric oxide (opens the veins and arteries), and a lot of fluid.  His pressures were dropping and he was satting low, so they were having to constantly tweak the medicines.  His pressures continue to drop as he needs fluid and increase immediately as its given.  He's starting to wake a bit (startling) and is hurting and agitated.  He's on Precedex (pain med) and weaning off morphine.  This was a much tougher day than I expected.  Praying for something/ anything to go easy!  The 1st picture was taken about 4 hours ago. He's swollen a significant amount since.