Yesterday was our clinic visit. We brought Caden with us to the visit as well. We felt it was time to have Caden meet with the Child Life Specialist to discuss how he's adjusting to all the changes. Based on our conversation with her, he's actually really doing very well. She said that one thing that may help a little more is to do some "medical play" with them. So she gave us two play kits full of medical stuff for them to play with.
We then talked to the doctors about the MRI results. The blood in the tumor seems to be reabsorbing into his body fine. There is some fluid that they may try to drain from the cyst at a later point, but neither neurosurgery nor oncology seems concerned about draining at this point. Dr. Bowers said he was "relieved" that the tumor appears stable and the cyst appears slightly smaller. With the current & new symptoms Caleb's having, Dr. Bowers was concerned that the tumor may have started growing again. However, that does not seem to be the case. He believes that the symptoms Caleb's having (with the possible exception of the difficulty swallowing) are due to the steroids. We decreased the steroids again. We are now at 0.5 mL once per day!!
Dr. Bowers is concerned about the swallowing issue, so he's ordered a video swallow test for Friday, February 18th at 7:30 a.m. I have to bring some food he's having trouble swallowing as well as about 6 oz of liquid he's having trouble with.
We went over Caleb's issue with his "stomach incision." It appears to be more of an issue with him not being able to defecate than anything else. Since he's having trouble swallowing liquids, he's hesitant to drink a lot because it keep going down the wrong way. This is not helping with the "movement" issue & it just keeps compounding itself. So, we've been instructed to dose him well with Colase, Miralax & Senna to get things moving along & keep doing so until he has several really good movements. If we're still having problems with it over the weekend, he may have to admitted overnight and have a tube inserted (via his nose) to flush his system out. Dr. Bowers says, "It's not pleasant at all, but it works." We're still trying to convince Caleb he really does not want that option even though it does mean getting admitted.
In other news...
We are in the process of getting home health set up for Caleb's PT, OT & Speech Therapy. We're also having his wheelchair "upgraded" to a slightly larger size. Only downside of that is that our bathroom doors are "barely" wide enough for the chair he has now. It scrapes the door & frame as we go through. The new chair will definitely NOT fit, but will be more comfortable & taller. The DME (durable medical equipment) company asked if we'd considered using a 3-in-1 potty chair instead. We could use it bedside if needed so we wouldn't have to worry about trying to fit the wheelchair into the bathroom. Sounded great to me so we ordered one. It's being delivered today.
When I logged on Facebook this morning, I saw a wonderful surprise from my friend, Staci. She created an awesome sign called "Team Caleb" for us. Of course, I immediately changed my profile pic to it. Here it is:
Thanks to all of you who are a part of "Team Caleb" for all you do.