Day 5 – Worst Decision A Parent Could Have to Make

Approx 7:30am Dan received a call from the weekend neonatologist telling us Justin had a rough night. They believe air/gas has built up in his chest and abdomen. His vitals were falling (oxygen blood saturation and blood pressure) and could not fully correct by adjusting his ventilator, oxygen and nitrous input levels. The presence of air in his chest and abdomen was confirmed with an x-ray. Dr. Cullen (Pediatric surgeon) inserted a syringe into his chest twice to extract the air but the air built back up. It is not known for certain where the leak is but due to the volume he expects it to be a ruptured air sack around the bronchial tubes between his lungs (medical term is Pneumothorax). The air is creating pressure around his lungs and in his abdomen which is not allowing the ventilator to do its job properly. He is going to put in a plastic tube just under his rib cage so they can express this excess air when needed. The good news is Justin is responding positively when they are able to relieve the pressure. It is 10am.

11am procedure went successfully and surgeon saw an immediate relief in air pressure in body cavity. We have to wait and see if it will be a long term solution until hole seals itself. He was ventilated with a hand bag during surgery. They tried to put him back on high frequency after but he did not respond well to that so they switched to a more conventional style ventilator.

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12:30 blood gas test showed improvement, he is still on conventional ventilator but has a little way to go until he is considered stable again.

1pm He is on a lot of medication and fluids which can affect his urine output therefore they are putting in a catheter.

2:00 Since Justin has been stable for a while the decision was made to transfer him to U of M. There are a few treatment options available there that if Justin gets a little bigger he would qualify for. They don’t want to wait for another event like what happened today to happen again to transfer as it may be too late then.

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2:55 U of M Life flight helicopter has landed.

4:25 After a long process of transitioning all of Justin’s 6 IV drips, multiple monitors, all this tubes and breathing equipment he was put into his travel compartment. It took a little for his stats to recover from moving him and his equipment. He finally recovered and Justin left the St John NICU with the U of M Life flight team.

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5:11 Received call from Life Flight nurse telling us Justin made the flight safely and tolerated it very well. His vitals were all the same as when he left. We were relieved beyond words as transferring him was very risky.

6pm Jess and Dan arrived at U of M and went right up to Justin’s room.

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The doctors were waiting for us and asked us if we could talk about some decisions that needed to be made. We sat down with 4 doctors, 2 Neonatologists and 2 pediatric surgeons. Their evaluation was that the event that happened earlier, the Pneumothorax, was a sign that Justin was in very critical condition. Since he arrived they made some adjustments to his ventilator and were still giving him 90% oxygen and 10% nitrogen which is the highest setting/ help they could give him to breath. Despite this his oxygen blood saturation was only in the low 80’s (should be mid to upper 90’s) and at times dipping lower. This was a blow to Jess and I as it seemed the news that he had made it safely to the new hospital was so positive but what they said next hit us in an indescribable way.
The University of Michigan is one of only a small number of hospital nationwide that has a potentially lifesaving treatment called “ECMO” (Extracorporeal Membrane Oxygenation). Essentially it is a heart and lung bypass machine that allow patients with damaged or under developed lungs with the oxygen the body needs while letting the lungs rest and heal. This procedure was a major factor in our decision to (plan to) deliver here. However, the pediatric surgeon explained to us that he had consulted with the head of the program and several other peers and the consensus was that Justin was too small to attempt this procedure on…he would be the smallest baby (in terms of weight) that they had ever tried it on. Despite that however they told us they would offer it if we wanted to attempt it but again it was not recommended. The likely outcome would be that he would not survive the procedure to connect him to the equipment or if they were successful he had a very good chance of dying or being permanently and very severely handicapped by a bleed in his brain (this is always a possible side effect of the treatment due to the blood thinners the need to use and it increases exponentially the younger the baby is). The only other option would be to continue on the ventilator and pray/ hope for improvement. They were very clear however in stating that whichever choice we made they did not expect Justin to survive.

So there we were crushed and broken and told we only had 1-2 hours to make a decision. As a parent how do you decide which way your child is going to die? The question was not phrased exactly that way but that is how it fealt.

We cried, prayed and called Jess’s mom (a nurse) and Dr. Cullen from St. John who we had gotten to know for council. Kev McKenna, a close friend, pastor and co-worker arrived to support us and help us make a prayerful decision. Finally at 8:30 we decided to continue Justin on the ventilator. We were praying that maybe he still is stressed from the procedure and transport earlier and if we gave him some time he may bounce back like he had done before. Also, we did not want him to “pass” on an operating table, alone and without us. Continuing on the ventilator meant we could possibly hold him (for the first time), comfort and pray with him. When all was said and done we believe we made the right decision. Justin’s nurse that night told us she admired the decision we made, she has seen many families go through similar situations and that this was the least painful and peaceful way for Justin, whether he made it or not.
The next few hours brought moments of hope and despair as Justin’s oxygen blood saturation climbed up and down.

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