For once, I’m going to make this quick as I’m drained from this last week of stress and need to get some sleep. In a nutshell, things seem to be looking up and getting better.
Today was impossible, Gavin was really struggling this morning with his prongs and we decided that he needed more oxygen than they could deliver, so we put a mask on him instead, which he absolutely hated and had a hard time with at first, but soon got used to. I knew that we were going to go to CT today, but thought it might be in the evening. At one point though, the fellow who was assigned to us today came to talk about sending him to the ICU and went over a couple of things that could be wrong. Seeing my poor babe labour to get his breath is breaking my heart in a way that it hasn’t yet been broken. His respiratory rates were extremely high and his heart-rate was correspondingly high too. There was a lot of concern from everyone on the team and yet again half the hospital showed up to assess him. However, when our staff doctor came around he quickly assured me that he wasn’t totally alarmed (yet) just concerned, and wanted to find out definitively what was going on in his lungs.
For just a moment, consider how lucky you are if you go through life breathing easily, with your heart and organs silently working away inside of you and carrying out the processes they are designed to. Most of us never consider how hard our hearts work or what our kidneys do for us every day. In fact, we abuse our hard-working bodies with gluttony and smoking, never considering how blessed we were to be born with these perfectly functioning forms. Tell your body today how much you love and appreciate it.
I was beginning to feel quite panicked at around 11:00 in the morning and asked Craig to leave work. So many things were happening and all I could do was sit with Gavin and hold the mask over his face. For his part, Bean was content to play quiet things like stickers and watch DVDs. He was really not up for too much today, no surprise. Respiratory therapy came to check him out, as did cardio and CCRT. All of these people put us in a kind of holding pattern, all pending what happened in CT.
I was told by Dr. Grunebaum, our staff doctor this week, that they just wanted to be sure that there was no fungal infection in the lungs, or other kind of inflammation, or, sigh, some kind of concentration that they would need to biopsy. In many cases a biopsy would require surgery, so my thoughts on hearing this were Please NO. But he felt that the scan could clear a few things up and was absolutely necessary. So we got Gavin out of his isolation room and onto a gurney, and a travelling circus followed him down. Craig walked stiffly ahead, clearly ready to shove anyone out of the way who sneezed in our path. We both found ourselves barking orders at people, Excuse me, could you please stay there for a moment while we pass? I feared the contraction of some kind of deadly disease.
Craig the CT guru stayed with Gavin while the scan was being done, which posed absolutely no problems, so we got to return upstairs and had the chance to say hi to Bubby and Da in the halls as we went. Dr. Grunebaum commented that he had to accompany us all the way back to the ward as he is terrified of patients travelling in corridors and elevators. At first I thought he meant because of the risk of infection, but then realized he actually meant that doctors fear what can happen when patients are in transit and away from quick medication and equipment. Doesn’t bear thinking about.
Once the scan was done, it was a waiting game back in the room. Bubby and I entertained Gavin, who had a burst of energy and wanted to pretend to be Pablo from Backyardigans for awhile. Later on Daddy came back to put Beanie down for his nap. I wandered the hospital and forced down some lunch with Bubby and Da. At several points today I’ve found myself sobbing noisily in public, not a very unusual sight here I guess, and at any rate certainly don’t care what anyone thinks of that. It is truly amazing how good news can turn things around so quickly.
Dr. Grunebaum came to find us later, and at first, looking at his face (doctor inscrutable) I thought he was bringing some terrible news. In fact he was just coming to tell me that they didn’t see anything of consequence, except that his lungs have too much fluid in them which we’ll have to extract with diuretics. “Just” fluid in the lungs! Doctors never want to say, I promise you in a blood-written oath that your child will get better. So, they say things like, I cannot speak for the bigger picture but I imagine that this should clear up in a few days. Good enough for us! Craig and I rejoiced over Gavin’s sleeping form.
His nap was interrupted by yet another ECHO, cardio still covering all the bases. We got word late in the evening that the ECHO too was clear.
It will still be a long week. I hope they’re no longer considering the ICU. I want Gavin to have a very restful couple of days and want to keep everyone out of the room if I can.
Clearly I am incapable of writing a short and zippy blog post with all pertinent information, forgive me.
Relief is sweeping through me in waves tonight, many thanks to all of you who are meditating on Gavin’s good health. Thank you for believing in him and in us.
I weep my tears of joy – for my little sweet Gavin who has never given up on himself – despite the recent laboured breathing attempts! – I can only imagine – thank God – what he and you and Craig were going through – I have visions of my sister Deborah standing in the hallway with Tom as you described unable to do anything but say hi as you went by. I could envision it all Erica.
Always believing in all of you,
I love you all in health (I’m so glad that I quit smoking)
Auntie Melanie xoxoxox
Sending love and positive vibes. Gracie made two wishes for Gavin today. Hope it helps. Love to you all. Stay strong, my friend.
I’ve been following this latest turn of events very closely. I join you in feeling relieved that his stats are looking better, and I join you in visioning him all done with chemo and restored to good health, out of the hospital, and frolicking at home with his family. Hugs from another ATRT mama –
Dear Erica & Craig – we send our very best to all of you as you struggle through this difficult week. We hope by next week everything will improve by leaps and bounds.
This Christmas will be a very special one, knowing that Gavin will be home (we pray).
Much love,
Auntie Bev.
Thank-you for such detailed updates. I appreciate the opportunity to join in Gavin’s choir of supporters, holding you all in our love. Meet you in prayer.