Part Two of a Post from Ron:
Today is my birthday, and I can honestly say that I still have a lot of growing up to do. It has been nearly five weeks since Tyler was originally placed on an oscillatory vent. He was supposed to be on the oscillator short term before transitioning to an APRV (different type of vent). There was one early attempt to switch to APRV, but Tyler’s blood gases were too acidic, so he went right back to the oscillator.
It didn’t take long to learn what a Delta P, Mean Airway Pressure (MAP) and Hertz on an oscillator means to your child’s ability to breathe. Without boring you with all the details, in four weeks, Tyler had made very little progress in being weaned from this ventilator. Many in his medical team told us that they’d never seen anyone be transitioned from an oscillator and survive after being on one for as long as Tyler had been without any improvement in the lungs. That is from doctors with a combined 60 years of ICU experience. It was very defeating to hear these kinds of statements.
Dianne and I at some point during these past two weeks decided that we would exhaust every option available before “making Tyler comfortable.” It appeared as though getting off the oscillator was not going to happen since Tyler’s lungs had multiple collapses and were looking cloudier and cloudier with each passing day. Earlier we had asked for a very high risk bronchoscopy to be performed, only to be told Tyler would not live through it.
Tyler ended up having the procedure this past Monday and defied the odds by coming through it like a trouper. I remember falling asleep that night and praying that bacteria or fungus would grow from the sample they took from Tyler’s lungs -anything to help doctors zero in on accurately diagnosing Tyler’s respiratory condition. It didn’t happen. By Thursday, March 15th, a meeting was called by Tyler’s treatment team to assess the current situation and try to figure out where we go from here. There were no realistic options for Tyler’s treatment other than to wait for eventual improvement, or make a highly risky decision to simply take him of the vent and place him on APRV. APRV is a different setting on a conventional ventilator and is used as a step down from an oscillator. The entire team agreed making that move now would prove fatal.
Dianne and I had decided early on in Tyler’s ICU stay that we would pull out all the stops before allowing our son to simply lie in a hospital bed day after day until death occurs. But before we threw the Hail Mary pass in the last minutes of the game by taking him off the oscillator, we asked the team to switch out his current oscillator and replace it with a new one, thinking there may be a minute chance that Tyler’s current machine was malfunctioning or wasn’t holding the correct calibrations.
Right after the meeting concluded, the PICU team got underway with the change. We simply could not live the rest of our lives wondering if it was mechanical failure that ended our son’s life. When we got out of the meeting, Tyler was already starting to fail. Changing the oscillator out did nothing to stop his downward trajectory. Everyone was in crisis mode as multiple staff tried to maintain Tyler’s blood pressure and oxygen saturation levels to no avail. So to honor our wishes, the attending asked for a regular vent to be rushed to Tyler’s room as a last ditch effort. But I knew perfectly well that if you can’t make it on an oscillator, you’re not going to make it on any other ventilation mode.
At this point I called our pastor, Kevin Hardy, in a panic to put out an urgent prayer request.
Earlier in the day, we were all wondering where an average of 2-3 units of blood a day had been going for the last 12 or so days, only to discover it had been leaking into Tyler’s digestive track and pooling there. We learned this after Tyler abdomen became distended and hard, then as the team tried to save Tyler’s life, Dianne and I actually watched as 3 liters of blood passed out of Tyler’s body. The attending PICU doc and Tyler’s oncology fellow pulled us out of Tyler’s room and said, “I’m very sorry, but this is it.” We trusted these two doctors since they had advocated for Tyler the most, so we knew it to be true.
I just couldn’t believe it; no matter how much you try to prepare yourself for it, it just seemed all unreal. Dianne and I were stricken with emotion. We all were holding each other and crying, including the doctors. It was an extremely somber time. I felt that everything had now been done to save Tyler, and now was the time to finally say goodbye to my son, an astonishing young man. We discussed some of the funeral arrangements with Pastor Kevin, and he encouraged us not to think about it at this time.
The treatment team knew what our wishes were regarding the last moments with our son, so they started to clean Tyler up and prep the room and his body so that we could be with our son until he slipped away. It seemed like a very long time before they came in to notify us that Tyler was ready.
I was gripped with emotion as I finally walked into his room. It is one thing to be told your son is dying as you struggle to accept it, but it is another to see it. There is no other way to describe how Tyler looked other than already dead, even though the new ventilator was making his chest rise and fall. Dianne climbed into bed next to him, and I held onto Tyler’s cold hand, wept and told him what an honor it was to have him as a son.
We told him how proud we were of his strength and accomplishments in life and how heaven was going to be a great place. We assured him we would help take care of some of his friends and make sure they were OK. We asked him not to worry about us, that God would carry us through. Dianne and I were speaking to him nonstop, thinking that our voices would be the last thing he heard before his heart stopped.
I watched the monitor as his vitals decreased nearer and nearer to death, then told Dianne that I thought it was coming more quickly than we originally anticipated. Tyler’s pulse ox was heading towards the 30%s, and his BP at one time dipped to 41/27. I buried my face against Dianne’s body and waited for the end.
I am not sure how much time lapsed, but Dianne suddenly asked me, “How come Tyler’s vitals are doing that?” I looked at the monitor and saw that Tyler’s pulse ox was at 83-84% and that his BP was in the normal range. I explained to Dianne that this was his body’s last ditch effort for survival and that he would be taking a sharp dive very soon.
I was shocked the next time I looked at the monitor to see Tyler’s pulse ox was in the 86-87% range and that he was now hypertensive and had a heart rate of 120. I left the room and asked Tyler’s doctors what was up with his vitals. One of them explained that this happens and that he was getting a lot of emergent medication. I explained that I had seen this before, but never this long.
As I was walking back to the room, one of the doctors stated, “Ron, he’s not coming back.”
After being in the room for 15-20 more minutes and seeing Tyler’s pulse ox now hanging between 93-94% and still remaining hypertensive, I left the room a second time and met with the doctors. I asked how long do we let this go on before resuming treatment? Tyler’s transplant doctor suggested getting a blood gas which initially came back with expected poor results.
The PICU attending shared the results and gave us the option of discontinuing the meds that were keeping him alive so that he could die a natural death. The doctor left the room and Dianne was silent. I went back out to the nurse’s station and told the treatment team that I know my wife and that she is going to want to hold on to him as long as she can. Tyler’s doctors were extremely respectful of all our decisions and very caring and supportive.
So when I walked back into Tyler’s room and saw that his pulse ox was 96-97%, I couldn’t believe it! I started to pray silently for God to save my son. I also told Tyler that it was not over just yet. We had told Tyler earlier that it was okay to stop fighting and that it was okay to let go.
Another blood gas was ordered, but this time we were all astonished by the results. Tyler was actually being over ventilated and his blood gas oxygen level was better than it had been since he was first intubated. Now they started adjusting his ventilator (which I still thought was set to APRV setting but was actually set at conventional settings, which are the harshest on the lungs). I couldn’t believe my ears – how did Tyler bypass the intermediate settings (APRV) and was now starting to do well on a regular vent? Unbelievable! I kept going from Tyler’s room, to the waiting area where friends and family were, back to the nurse’s station. We were all in disbelief and amazement, except for Dianne’s sister who was just smiling.
At this time Tyler had his color back, and I noticed that his nostrils were flaring out as he was being ventilated and was taking breaths on his own between the vent cycles. Tyler’s pulse ox was now between 99-100%, so they actually started weaning his O2 levels. Again, unbelievable! I had to just sit down and soak all this in. I was thinking to myself, is this really a miracle?
In the past I have gotten annoyed with people saying things are miracles. To me, there has to be no logical explanation for events in order for it to be a miracle. That is not to say that God doesn’t intervene; we never know the extent that God intervenes in our lives. I have felt God intervening in my thought processes and decision making all along this entire process, but still, that is not a miracle.
While all this was going through my head, Dianne shouted, “Ron, come in here!” Tyler was squinting his eyes, and it made me start crying all over again. I was so excited that I said, “Tyler, this is your dad, blink your eyes if you hear and understand me.” And he did! I had to make sure it wasn’t a coincidence so I ask Ty to squint his eyes again, and he did. Due to Tyler being without oxygen for so long I wondered about any damage to his brain, but here was a quick mental status check that he passed with flying colors.
Time passed, and the joy on everyone’s heart was overwhelming. The attending PICU doctor asked if it was okay to get a chest xray of Tyler’s lungs now. She asked for our consent because we still weren’t exactly sure how stable Tyler was at this time, and the movement of getting an xray could destabilize him. Nonetheless, we agreed. When the xray came back, the PICU attending threw her arms in the air and said, “There it is!” Again we were all astonished at what we were looking at; two very different xrays taken only 5 hours apart. Look at the before and after photo and see for yourself. The doctors assured us that there was no way any intervention they provided could have produced the same results.
The giddiness, excitement, and joy of this day and the events that took place could never be described in words. Maybe it’s because I’m Tyler’s father; I don’t know, but trust me when I say, you had to be there to witness this miracle. I felt secure enough to actually go home; yes, Tyler was going to be all right.
From the bottom of my heart, THANK YOU JESUS for saving my son. Also forgive me for my lack of faith and times of weakness; even though I’m sure You understand. Even though Your presence has been here all along, and you have worked through many people to bring us this far, I was unsure if it was to help Tyler, or help my wife and me cope with the death of our son. I have a clear answer now. I will dedicate myself to moving closer to You and improve our relationship so that I will not struggle so much the next time adversity hits and actually use this experience to help others.
Love,
Ron