PJ Pasquale ’s Story

Site created on July 17, 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.

Newest Update

October 11, 2019

Journal entry by Lynn Smith —

PJ has been home now for a little over two weeks. We were worried about his dog, Ellie, jumping all over him but she seemed to quickly understand his fragility. She is very careful around him. They both needed to be with each other again. Ellie lost weight while her “family” was gone for so long. She doesn’t understand peripheral neuropathy though and she steps on his feet sometimes! He barely fit in the adjustable bed that we got for him. He was very excited to be able to play his Xbox again. He has had friends over and has even gone to a nearby friend’s house to just “hang”. His close friends are very careful around him and help him get around and make sure he is drinking etc.. So even though it was nerve wracking the first time he left the house I knew he was in good hands! PJ is actually quit busy.  He has had multiple follow up doctor visits. He has PT and OT at home 2 times a week each and he has a Nurse who comes weekly to check on all of his pressure sores. He has 21 pills a day he needs to take and his vitamins on top of that.  We are tracking everything he eats in the Fitness Pal app. He is supposed to eat around 3,000 calories a day. Keeping him fed for his 3 meals and 2 snacks everyday is a daunting task. Uncle Hank and big sister, Frankie - (a big thank you to the folks at Strossners Bakery) bring him his favorite foods frequently and I have become a member of 3-4 home delivery apps like GrubHub. He is finally gaining some weight back. On our home scale he hit 150 lbs!!! 

His upper body mobility and strength is improving nicely however his PT for his lower body is severely limited because of all the persistent pain in his feet from the sores and the neuropathy. He is a trooper though and does his PT anyways. His big sister, Natalie, comes on some of the off days to do his PT and OT with him too. 


His pressure sores on his right foot and back side are healing nicely. The big one on his left heel is being very stuborn. The wound doctor said it will be at least another 2 months before they are fully healed. 


We finally got his special ordered wheelchair - sized to fit his tall skinny frame. He learned very quickly how to manuver around in his chair. Of course he would rather be driving a car. He turned 16 a week ago and he was supposed to get his drivers license then. 😩 


The wheelchair is padded and designed to fit him but it is such a cumbersome task to take it apart and load it in the car all the time! We are going to use some of his Go Fund Me dollars to rent or buy a second wheelchair so we can leave one at school once he goes back. A Big Thank You to everyone who donated! 


This week on Tuesday Oct 8 we went to his school for the first time. We met with people to finalize his Homebound and a plan to get him back to school for shortened days. That day was the Blood Drive in his honor so we visited there and watched the Red Cross in action. Very impressive! Thanks Mrs Trakas! And a Big Thank You to everyone who donated blood! 😍😍


PJ was treated like a celebrity at his school! He thuroughly enjoyed all of the attention. All of the staff and teachers are committed to helping him get caught up and return to school. We can’t thank them enough for all they have done and are willing to do to help PJ! ❤️❤️❤️


PJ has been able to get up our stairs at home to get to his bedroom!  So he is very happy to be able to sleep in his own - huge King sized - bed for the last two nights. Thanks Sherry!!!!


We took him to a Pediatric Neurologist who confirmed the diagnosis of peripheral neuropathy of both of his feet.  Today - Friday Oct 11- PJ will have an EMG study done. This is a nerve conduction study and it will give us a lot more information about his peripheral neuropathy. We are hoping and Praying that this neuropathy that is causing him such discomfort will eventually go away.  We are Praying that this EMG study today won’t be too painful for him! 🙏🙏🙏😬😬😬

 

Read More of the journal titled "October 11, 2019"
  • PJ with Mrs. Trakas at the Blood Drive Oct. 8
    PJ with Mrs. Trakas at the Blood Drive Oct. 8
  • PJ’s First night back in his own bed! He was very very Happy!!! and he slept well! 
    PJ’s First night back in his own bed! He was very very ...
  • PJ at the Blood Drive with his classmate
    PJ at the Blood Drive with his classmate
  • PJ’s First night back in his own bed since we left for Virginia over three months ago on 7/7!!
    PJ’s First night back in his own bed since we left for ...
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