This update is an effort to collectively respond to all texts, FaceBook messages, emails, and phone calls. Sorry! I’ve barely even talked with Alli, much less responded to all of your inquiries on Mason. This week has turned out to be the one of the hardest to date. It took 3 full days to really get Mason’s pain under control and that has been all I could focus on. Last night we finally slept decent-ish in between thousands (not even exaggerating) of beeps. At one point yesterday, I think I used the terms “murder” and “stab” with one of the nurses when talking about the beeps while sleep deprived. This was not a nurse that knows me well and I’m pretty sure she doesn’t want to get to know me now. My joke came off as creepy and disturbing to her and I didn’t even have the energy to explain that I was kidding. After living in a hospital, I can’t even stand my microwave. And, I despise the fact that our new washer and dryer default to playing music in the form of various repeated beeps after each cycle. The beeping has become worse than listening to people chew!
Here’s where we are at the moment. And, keep in mind the status literally changes hourly. After all of this time managing pain, Mason was just unhooked from the final IV tubing. It’s been a gradual process today to unhook everything from oxygen to fluids to multiple pain meds. He’ll still have to be hooked back up now and then for magnesium, which we can’t seem to get up. But, as of just a few minutes ago, he has officially been switched to oral pain meds instead of IV in preparation for going home – possibly Monday. This is a huge step and we will not be surprised if adjustments have to be made in the next few hours to keep his pain under control. In all of the surgeries that he’s had, this is by far the most pain he’s ever experienced. His tibia hasn’t hurt at all (yet), but his hip is horribly painful. He ended up with pancreatitis soon after surgery that they believe was caused by the anesthesia meds used. This, I guess, is really painful. Thankfully, he was already on major pain meds. His stomach was really tender to the touch, but he said it didn’t hurt as long as everyone wasn’t pushing on it. In a teaching hospital, EVERYONE gets to push on it. The worst part of the pancreatitis was that he wasn’t allowed to eat anything at all. So, he didn’t eat from Tuesday night until Friday. This led to him feeling more weak and even more nutrient deprived. Thankfully, during most of that time, he really wasn’t that hungry. He has eaten very little even though he’s officially back on a restriction free diet. Big thanks to our friend, Jan, who happily fulfilled his request (and mom and dad’s) for Andy’s frozen custard as soon as he was hungry.
Since surgery, we have talked more about physical therapy than acted on it. We, unfortunately, had a bad experience with the last surgery and doing PT that ended up being harmful instead of helpful. So, we’re all a bit jaded. I managed to voice loud and clear that Matt and I would prefer physical therapy via home health instead of being the pain inflictors this go ’round. We are perfectly fine with parenting our children with firmness if that’s what it takes for them to be successful. But, this entire experience is a lot for all of us and we felt we had to decline being his physical therapists. I think our concerns were heard and understood. The problem, we are told, is that there just aren’t that many places that offer PT for pediatrics. “Parents are usually capable of carrying out the directions.” I kindly kept my mouth shut after that statement. It’s not an issue of being capable. If you were to tell me a year ago that we would have to learn half of what we have had to in order to care for our child at home, I would have told you NO WAY! The medical care that we have taken on at home is likely comparable to a medical degree of some sort! However, there is hope that we will have home health PT through Children’s Mercy in the near future. Mason has sat up on the side of his bed twice, put shorts on twice, and today he pivoted with the help of a walker from the bed to the recliner that was touching the bed. Each of these transitions could be heard down the hall. And, this is not at all like what we are used to with Mason and pain. He hurts like he’s never hurt before. Recovery will be a long, hard road, but we will make sure he gets there. Everyday at this point should get better.
On top of the surgical pain and pancreatitis, he has been running a persistent fever. It’s a complete mystery as to why. Of course, it could just be post operative (pray for that!). But, there are so many factors that have to be considered in a case his complex. They’ve cultured every possible bodily fluid twice since surgery and will do so again at 4am if he continues to run a fever into the night. All cultures are negative so far – hallelujah! We haven’t seen either incision and the hope is that we don’t uncover any dressings until at least Monday. But, they are pretty stumped and may have to go that route if it persists. So, throughout the last couple of days, Matt and I have had numerous conversations with multiple medical professionals about this fever. In my very simple mom mind, I decided that there was a possibility that the fever was related to something not cancer or surgery related. He’s on tons of pain medication. If he were to have an earache or a sore throat or something normal kids have, he likely wouldn’t feel these things because they would be masked by the morphine. I mentioned that to one of the residents almost 2 hours ago. She rolled her eyes and said she wished she would’ve thought of that. Then she said she needed to go and find an otoscope. Literally, as I’m typing this, she just walked in with a fancy otoscope on a pole. It’s sobering to realize that the simple tools most kids’ doctors use on them are not even readily available here. I want to go back to the days of taking my kid to a plain old doctor and having him/her use a stethoscope, otoscope, knee knocker and sending him away with a good report. Oh, how I took those days for granted! Ok…so nothing obvious with ears or throat. His heart rate is elevated so they are already considering putting him back on fluids. THIS is why I can’t update…it changes hourly!
What I do know for certain is that Mason is starting to get color in his cheeks again. He is cracking sarcastic jokes and overall acting more like the kid we know. So, we will take all of these things as good signs and praise God that things are starting to look up.