Tyler is too unstable to perform the bronchoscopy he needs to open his right lung. His blood pressure dropped very low today numerous times and he requires medication to bring it up. His CO2 gases have risen above 100. All his vent settings have been increased. They are putting him back on two antibiotics they removed yesterday in case he has another infection.
At our meeting his entire medical team said they do not understand why neither Tyler’s collapsed lung nor his lungs in general are getting any better despite all the weeks of treatment. They are frustrated, and we are frustrated. A key issue all these weeks has been Tyler’s continued struggle to breathe against the oscillator. No matter how much they upped his sedation, he would fight to come out of the sedation and breathe strongly enough to set off the alarms on the ventilator. Over the past four weeks Tyler has built up a powerful tolerance to more and more sedatives. Despite this, his doctors have hesitated to keep increasing the dosages, because the more he’s on, the more he will ultimately suffer severely from long periods of withdrawal.
Today in the meeting his team decided to stop being conservative with his sedation and pain killers, as the lack of coverage is causing the oscillator not to succeed, not to mention causing Tyler to suffer. Without regard to what he will have to deal with when it’s time to come off the meds, they are bringing out a powerful drug he’s never had and increasing his other drugs. We are praying that if he’s properly sedated, the oscillator will function better, and his lungs can finally heal.
All the extra meds brings up another dilemma. Tyler’s damaged veins can no longer support IVs in his hands and feet. Today, despite his instability, he had to have a SECOND double lumen PICC line surgically placed so that he can receive all his required medications, nutrition and blood products when they are due. He now has a double lumen Hickman catheter and two double lumen PICCs. Each one of these is inserted into veins leading directly into his heart and are sources of infection.
The second PICC line brings up yet another dilemma. Last Friday’s PICC was placed in his left arm, and his arm and hand have been swollen ever since. An ultrasound yesterday revealed a small clot in his brachial artery. So far it is not occluding, but it is causing the swelling. As is so often the case with Tyler’s complex condition, they cannot treat this clot, because of the bleeding in his stomach. If they administer blood thinners, Tyler’s GI bleeding will not only get worse, but he may start bleeding in other areas as well. So for now they watch the clot.
We don’t know how much more assault Tyler’s fragile body can take. These past weeks have been indescribably brutal to watch. The team believes something good has to happen soon before they run out of safe and even not-so-safe options for him.
Hope, faith, and love. We still have a large measure of each and are not giving up!