See - resting more comfortably...

Little more challenging this morning

Everything was looking great until 600a. At 600a, Keane was so hungry that he ate an ounce right out of the haberman bottle for the second time (first time at 230a). He was angry when the bottle was finished, so I asked if he could have another ounce. It seemed like a good idea at the time; however, coinciding with finishing the bottle, or because of the increased food in his tummy, extreme discomfort occurred after his 600a feeding. He had sustained tachycardia (195), increased respirations (50s) and prolonged desaturation (O2 sats in mid- to upper- 80s). Since we are used to now seeing him looking pink and healthy, is was pretty traumatic on Mom to see him blue and dusky.

I have concerns that the night nurse was too delayed in giving him his Tylenol, which can be administered every six hours. His last dose - after my request - was at 1045a. When I went to bed at 330, he was due for Tylenol at 445a. I woke up at 600a and he had not had any Tylenol. He also had not had any narcotic pain meds since Saturday at about 9a. I believe the lapse in Tylenol, combined with his still labored breathing, receipt of a Tylenol suppository, and an upset stomach from eating/increased GI gas, made him extremely uncomfortable. I requested morphine at about 645a. He then rested comfortably until Ben arrived at 730a. Again, tachycardia, increased respiration rate and blue baby reoccurred. The entire ICU team came to respond. He calmed down again after a few minutes and a very unpleasant suctioning.

He is now a little raw from being suctioned so much. During rounds, his team made a plan to attack the "wetness" in his breathing aggressively. He is on increased diuretics and high flow O2 via nasal cannula. He did have a repeat chest x-ray at about 800a that showed a still large heart, but no alarming issues with his lungs.

Dr. Kirby, the attending intensivist, is going to come back after rounds to check in. Also, we expect to see someone from his surgical team today - in Keane's anger and discomfort, he pulled out one of his chest tubes almost completely (which lead to more anger and discomfort). As you will see shortly, he is now resting comfortably.

Status - unchanged

Sorry, I couldn't get a picture before he was removed from the mini chair. The status is unchanged. Still a little trouble breathing, but he is unassisted. All labs and vitals signs are strong. He has not eaten yet. We had hoped that would happen today. However, he is not awake or alert enough for long enough to eat.

Mini Chair

After much suctioning and necessary baby torture, he seems to be breathing a little easier. He is also going to get an extra dose of Lasix. I will try to post a picture in a bit  - he's now sitting in a chair, in bed. By all indications, he is much more comfortable sitting up.

Not so fast

Little trouble breathing. He may need a different assistive breathing device (CPAP). We will see....

Extubate done!

Air tube is out!  He's breathing on his own and doing great.

Waiting to extubate...!

Keane did so well over night that we are planning to extubate this morning. Waiting for him to wake up. He has opened his eyes quite a few times since last night. He's not receiving any sedation currently, so when he wakes up, his breathing tube will come out. That's the plan. And yes, that plan is much better than anticipated.

A picture's worth 1000 words

I can't tell you how great it is for us to be reunited with Keane. Ben is sleeping and I am definitely decompressing. I am not sure if the video does justice to his new found complexion - he's so pink! Don't worry. I kept him covered up so you don't have to see the chest tubes. I am surprised at his sedation level - he's not as sedated as I was anticipating. He clearly knows we are here, grabs our fingers and wiggles around a bit when we talk to him. 

He is steady. Nothing alarming, just the anticipated issues expected from a boy with body that has never had a functioning heart. His body is trying to find it's new, healthy homeostasis. He has quite the team attending to him; one nurse all to himself who doesn't leave the room, two pediatric intensive care docs, Dr. Kelly and his surgical team. Everyone has really been great thus far.

Closing...!

They are currently closing Keane's chest. The surgeon, Dr. Langley, is very happy with the repair. He said that Keane's heart was extremely complex and the defect was large. They used his own pericardium to patch the primary defect (Atrial-Ventricular defect, the biggest one) and bovine pericardium for the ventricular septum defect. The repair on the tricuspid valve was "impressively perfect" and the mitral valve has a "trivial" small leak.

Keane's heart rhythm is good enough that he does not need a pacemaker. The next hurdle will be making sure he doesn't get pulmonary hypertension. How his lungs respond will dictate how long he will be intubated.

Overall, looks like he is having the best possible outcome to this point. Dr. Garrah is going to spend another 15 minutes from this post time closing the incision. Then, he will transfer to the PICU around 210p or 215p. He will be with the ICU team for one hour before we will be allowed in the room. So, we are aiming to be reunited between 3p and 4p.

We are in Room 19, Doernbecher PICU. There are no cell phones allowed in the PICU, so we will have Gmail up for instant messaging for those who also have Gmail. We will also have Skype open when possible. Just know, if we don't respond promptly to texts, etc. it's because our cell phones are in a central storage location...! Actually, now that I think about it, I am unclear whether or not we will be able to connect to wi-fi in the PICU. Lots to figure out still.

Eureka! It works....

Keane's heart is beating on its own. They are working on closing up the chambers then repairing his sternum. After his skin is closed, they will do a post op echo in the OR. We should get the "surgery end" update around 230p.