Yesterday Peter was the picture of health and happiness as he ran around the park. This morning he tried to bribe me into Starbucks by sneaking up on me and showering me with hugs and kisses – but he was fasting due a sedated treatment scheduled for today – so hugged and kissed me tighter hoping I would change the rules. A couple of hours later I could hear him crying while I worked which broke my heart – I figured he was hungry and thirsty. John came down to tell me he was taking Peter in early but he had a temp that had reached 102 and climbing, and was dry heaving. We believed it was likely a result of dehydration but still worried.
After getting to the oncologist he settled down for a period of time but the decision was made it was too risky to do the lumbar puncture under sedation given that he was dry heaving until he would vomit what little fluid was in his tummy. He was hooked up to IV and given some medicine. He was so lethargic he slept uncomfortably through most of it. Then time came for the chemo infusion when as John described “Peter turned shades of lots of colors – all the wrong colors”. The ambulance was called and Peter was raced down to the hospital.
For the record I raced the ambulance there and beat it by a long time!! Sitting in Peds waiting for Peter to arrive was painful.
By the time he arrived he was on 1/2 liter of oxygen, saturating in the low 90’s but elevated heart rate and breathing slightly elevated. It went down hill from there. In no time at all he was on 3 liters of oxygen, heart rate over 170, painfully taking over 80 breaths a minute and wincing in pain till tears ran down his cheeks as he shivered with a climbing fever. He would snuggle up close to me seeking comfort and warmth until in desperation he would throw his head back trying to get more air as his tummy area retracted. We had a wonderful nurse who made sure the PICU doctor came to see Peter, and then again, and then again. She kept him informed of all that was going on – and I could tell we were getting to point of transferring to the PICU. I felt a sharp contradiction between wanting to hold him tight as if I could transfer healing power to him, and wanting to shout out “put him on the ventilator and stop him from suffering!”.
Peter was on constant IV fluids, received a couple of knock-the-socks-off antibiotics, breathing treatments and CPT to help him. He couldn’t sit for the x-ray without some support and shook uncontrollably as tears rolled down his cheeks. After a couple of hours and a lot of Motrin the fever started to drop and he started to perk up. He had slept restlessly in my arms most of the late afternoon and evening. By the time John arrived to the hospital tonight, Peter was sitting up and happily watching Clifford. Using single words to try and explain what was happening and hugging us a lot. By the time I left I could feel the fever was starting to climb again, his breathing was picking up and he was wanting to lay down – but, with smiles on his face is clearly in for a long night of wanting to watch Clifford over and over and over again. Watching it each time as if it were the first despite the fact that we watched 1,000 times last time we were admitted.
We don’t know why this happened. Last week he had the best cardiology appointment ever! His pulmonary pressures were amazingly good, his cardiac function was near perfect and we were getting ready for a sleep study to hopefully take him off of night time oxygen. And all that was at the peak of the fire and the horrible smoke we were sure was going to cause him to fail his cardiology visit. At this point we doubt this was related to the fire – but as we were getting ready to head up to Montana late next week – this has reminded us yet again how fragile Peter really is, and how fast he can go from the picture of health to struggling to breathe.
I don’t know what we are going to do about the trip – but I know right now I am so thankful that Peter is already feeling better, not on a ventilator – and we pray is on the road to a speedy recovery. On my way home to spend the night with the kids an ambulance raced past me headed to the hospital. And I prayed for that patient and their family – and hope that they are as blessed as we are with the local and virtual community of support constantly keeping Peter in prayer. THANK YOU!