What a roller coaster 24 hours! This time yesterday I was on a plane home from Minnesota via Denver. I texted John when I landed in Denver and then again when I was disappointed I would have to pay to go stand by on an earlier flight. He told me everyone was happy I was coming home and he would stay up for me. All was well. Finally at 10pm we started to board – I texted John again – and he replied with a “Text me when you land”. I thought nothing of it. When I landed in Colorado Springs, John texted me that he was at the ER with Peter. I was crushed! I was so looking forward to being home and enjoying time with the kids – and all the fears that come with Peter getting sick flooded back. He said Peter was running 103 temp and struggling to breathe. It felt like a deja vu. I raced over to the ER to be with them.
Did I ever mention that Peter puts me in time out after a trip? He doesn’t understand why I am gone – so for about the first day that I am home he totally rejects me. Consumed already by guilt of being a traveling working mom – he unknowingly drives a stake into my heart. This time was no different. All I wanted to do was scoop him up in my arms and he looked at me, said NO, put his hand out as if to push me, and then turned his back. This adjustment period is so hard every time I am on a trip – but this time was a million times harder.
The doctor was in and out as were nurses. So thankful that nurses we know and trust were on duty in peds and came down to assist with Peter. His temp high, breathing very labored and fast – I could see him retracting pretty hard when he breathed. His heart was racing so fast I could see the rapid pulse popping out of his neck. It honestly was like reliving last November just waiting for the ventilator. Peter was getting more and more agitated as they tried repeatedly to access his port without success. Finally he started to get sleepy – and this was when I was able to climb onto the bed with him and he fell asleep on me. What a gift!
He was finally moved up to Peds unit and a little after 2am, I headed home as we needed to make sure kids got to school. So with little sleep on my side, everyone got dropped off safely and on time, before I headed back into the hospital. Peter slept in for a long time – but his breathing was still labored, heart rate high, and very warm. John and I were able to spend sometime together until Peter surfaced. He attempted to put me back in time out but I told him I was laying next to him one way or another – I climbed back into his bed and in seconds he was snuggled up…..maybe not where he needed to be, but definitely where I needed him to be! We spent the rest of the day like watching cartoons – eventually falling asleep together and I was able to get a light nap while I listened to his improved breathing and felt his warm breath……never really take breathing for granted any more!
His oncologist came in today and Peter’s morning labs were worse than the night before. He was dehydrated so that impacted the counts – and once the IV plumped him back up over night – the labs this morning were more accurate. His ANC that we strive to keep between 1500 and 1800 was under a hundred. All his counts are lower than last week but he has barely any white blood cells. Nothing was cultured yet so we really think this is all as a result of the tough chemo he had over the last week that wiped him out hard. Given how low he has gone the expectation is that he will be admitted until at least middle of next week until his counts reach a safer level again.
This afternoon a doctor came in to evaluate the situation with Peter’s port as there was the likelihood he was going to require surgery to have it replaced. She determined that it felt positioned properly and was a little more forceful in her flush/pull of saline until she got some blood. They decided it was safe to put a thinner in – so we are hoping that will clear what we assume is a clot – and his port will be back to normal functioning – per John’s evening update they moved the IV to the port and so far so good.
I left late afternoon to come spend the evening with the kids and get everyone where they need to be in the morning – including cheering Tommy on at his very first track meet! At that time Peter’s breathing was normal, his heart rate much improved, his temperature down but best of all – he gave me big hugs and tried signing “I love you”. Hugs from Peter are like my IV in life – I am so dehydrated without them!
Peter continues to be lethargic and not his normal happy self, but we pray he continues down the road to full recover. Unless things change materially during the night, I am going to wrap up today with a THANK YOU for all your thoughts, prayers and words of encouragement – John loves having me read them to him and we both tear up and smile!
ps. I haven’t had the time (my most used excuse!) to get all the features of this blog going….so the Facebook link hasn’t worked. During times Peter is in the hospital I will do snippet updates on FB so if you want to catch those you can find me as “Catherine Joanna Krause”. We are still keeping the CarePages going – and for the most part will match the updates we have on this blog for Peter less pics because I got tired of fighting the CP to get pictures uploaded.