I’ve started this sentence about five times and deleted it every time because I simply don’t know where to begin. I’m so, so happy to report that Gavin seems to be on the slow road to recovery, with his hypertension resolved, and heart-rate seems to stay moderate or low as long as he’s getting the oxygen he needs. And yet, I feel that by saying anything positive I’m jinxing myself and will find everything crashing down around me tomorrow. I knock on wood and cross my fingers, just as all our doctors do, and very cautiously say, things are getting better.
We still think that all of this might have been triggered by too much exposure to the DMSO. (preservative) I think he is just at a point where his body and immune system have taken such a beating, he simply can’t handle any more. Last night I bumped into a family I know as I wandered the hospital searching for food on a quiet Sunday night. (Our options at night are SO limited, Tim’s, Burger King and Subway. Ugh. I ate Burger King for the first time of our whole stay last night) Their little guy is the same age as Gavin and he has leukemia. The difference between our two little men is astounding. Their son doesn’t even look like he’s going through chemo – he hasn’t lost his hair at all and he’s practically chubby. I watched him push his IV stand around the hospital with envy, he seems so solid and healthy. In comparison, my wee Gavin has lost all his hair and eyelashes, is bald, scarred, and thin. It is painful to think of how he looks right now.
I know that things can change very quickly. I know that once he begins his recovery he will appear better very rapidly. I dreamt a couple of nights ago that his eyelashes grew back in overnight, and they were so long that one of the doctors kept trying to cut them, and I kept saying, no they’ve just grown back in, leave them alone!
After meeting with the team this morning, I feel that all of the bases are being covered and we’ve ruled out some really terrible things for the time being. They are still pleased with how he’s doing, because he’s still playful and active, whereas many of the children lie in their beds, wracked with pain and unable to do anything. But his energy is very low and he certainly feels very unwell. He has retching episodes, but hasn’t eaten anything for about 5 days now, all of his nutrition is through his central line.
Last night he didn’t want to go to sleep until 11:00. I was exhausted and literally begged him to sleep. When he finally did, he slept quite soundly, but I was constantly disturbed by the noise our nurses were making coming in and out of the room. Some nurses are ninjas, in and out, completely silent. There is also a fine art to timing their entrances to catch the IV pumps before they beep off when they finish running a medication. It is so frustrating to fall into a light sleep, only to be disturbed more than 8 times in the night by the beeping of the pump as it finishes running a med, and then a few minutes later, the flush that they’ve put in. You have the choice of either getting up to silence it and calling the nurse, or just buzzing them and enduring the constant beeping until they come. There were also entrances to check vitals and occasional air bubbles in his lines, so I’m pretty sure that I was woken up about every half hour last night.
Early this morning, I heard Gavin’s monitor alarm going off. It does tend to alert us quite a bit for no reason, so at times can be ignored. (It’s a terrible noise though, imagine combo air-raid siren/annoying alarm clock.) After some groggy contemplation, I finally realized that he was in oxygen desat., and had been for an unknown period of time. His sleeping heart-rate had thundered back to 160 from the comfortable 120 it had been at for most of the night. He slept on but was breathing rapidly, trying to suck in oxygen. I couldn’t understand it, so tried increasing the volume of the oxygen a little bit to see if that helped. No change. After what seemed ages I finally figured out that he’d clearly rolled on the tubing and popped it off the oxygen spigot. It was totally disconnected. After plugging it back in, his levels increased, breathing slowed down and heart-rate eased back down from his marathon rate.
As you might imagine, I was very annoyed but didn’t have the opportunity to address it to the non-ninjas. Later in the day I brought it to the attention of the charge nurse, who practically rolled his eyes at me and shortly told me he would see that it was brought up later.
Cardiology is still following us, a tech rocked up to do an ECG today but I sent her away as it was during naptime and I didn’t want a repeat of Thursday night. We will try again tomorrow when he’s sure to be more cooperative. Our doctor, Audrey, backed me on this call which always helps. Apparently, cardio just want to make doubly sure that there’s nothing abnormal going on with his heart. All digits crossed.
I want to send out many thanks to all the people who’ve sent us packages and mail in the last little while. Gavin is completely spoiled and probably now thinks it’s normal to open a present every day. Reality check coming soon Beanie! We have received such lovely things, we are forever grateful for the boundless generosity that surrounds us. Thank you, lovely and giving people!
For tomorrow, putting my energy into weaning Gavin off the oxygen, and may try to feed him something as well.