Jul 17, 2019 Latest post:
Oct 11, 2019
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7/11/19 PJ's is 15 yrs old and he was born with a chest wall deformity called lateral pectus carniatum. As he has gotten older and taller this abnormality of his chest wall has gotten progressively worse. The right side of his rib cage was sticking out while the left side was going in. For now this was not a real problem but if it was not corrected then his heart and lung functions would eventually have been compromised. We did our homework and found a Hospital in Norfolk VA where surgeons at the Nuss Center specialize in the repair of these types of chest wall defects. On Thursday 7/11/19 PJ's initial "Ravitch" surgery, which is an open chest repair, of this defect went well. It took the 5 hours that we expected.
They took out part of 6 ribs on each side of the sternum. Then they put in Titanium bars in his chest and the idea is for his ribs to "grow" back along the path of the bars. The surgeon came out to the OR waiting room and reassured us that all went well. They were waking him up from anesthesia and we would be allowed in the recovery room to see him soon. About 45 mins went by and a nurse came out to get us. He was in the recovery room, groggy but waking up, he had just alittle O2 blowing by his face. He was on monitors still. Heart rate resp rate O2 sats and BP. Everything was fine. Only one nurse assigned to watch over him. They did have a morphine medicine drip going. He had two "blocks" in his back either side of his spine with a medication going around and into the surgical site for additional pain control. Then after we were in there with him for less than 5 mins his numbers all started going down. His O2 sats went from mid 90's to low 80's his face and lips got pale. He was trying to tell us that something was hurting him. We got the nurse and within a minute he was "crashing" his BP went down he stopped breathing and his Heart rate went down and then stopped. Nurses started giving him more O2 and a ton of other people came in and had to start CPR and the electric cardioversion to restart his heart.
Every time his heart started again they tried to stop the CPR and his heart stopped again This happened 5-6 times over about 1 1/2 hours. They got him intubated and started bagging him to breathe for him.
They started "pressure meds" to increase his BP, epinephrine, and keep his heart pumping. Then they took him to the Peds ICU. In the PICU they realized that there had to be some internal bleeding at his original surgical site. That was when his surgeon said he had to take him back to the OR to see where this bleeding was coming from. They had already given him a bunch of blood transfusions.
In the OR for the second time they "cracked open" his chest which is basically a very very fast thoracotomy to get access to his heart. The surgeon found a laceration/puncture wound in his heart - right ventricle. He managed to stitch it up while it was still beating. Then they brought him back to the PICU. That first night they gave him 68 units of blood. He "bled out" his entire blood volume at least 5 times.
We do not know if the laceration to his heart was something that happened in the first surgery or it was caused by the forceful CPR he needed. He had titanium bars across his rib cage where the surgeon had done the first operation. Something on the bar or maybe his own cracked rib could have lacerated his heart. Or it was done during surgery. We think that most likely he was having internal bleeding from somewhere within his thoracic cavity from the initial surgery and that started everything by causing a drop in his BP but it all got worse very fast because the CPR done to resuscitate him may have lacerated his heart and he just started bleeding even more- so yes something went very very wrong.
So now today 7/31/19 PJ has been in the Peds ICU for going on 3 weeks. He has been sedated this whole time. He wakes up every few hours for a few minutes. He is still on a ventilator to help him breathe. His liver and kidneys and GI tract all basically shut down. His liver is recovering. He is getting dialysis while we wait for his kidneys to recover. He has an illeus which means none of his intestines are working. His nutrition is all through IVs. He is on TPN with Lipids. Yesterday he went back to the OR to get a Tracheostomy. Now the ventilator is hooked up to the Trach instead of an ET Tube in his mouth. During his more wakeful periods he looks around, blinks his eyes, moves his arms, hands, legs and feet and now he is moving his mouth and lips in an attempt to talk. It appears to us that PJ gets very aggitated and frustruated. He wakes up confused. We are constantly telling him where he is.
PJ is making small baby steps forward each day but he still has a long road ahead. We appreciate your support and words of hope and encouragement. Thank you for visiting.