Yesterday we had a full day of appointments at the hospital and I will never, repeat never, do that again. I appreciate them trying to make sure we don’t have to come back more than necessary, but it was way too long of a day for both of us.
First up, our clinic visit. The day before our doctor had called and said we didn’t need to re-do labs since we did them on Monday, so I showed up an hour later for our clinic visit appointment time and skipped the labs. Turns out that there were actually some tests they did need to do that hadn’t been done on Monday, so we would need to come back for labs later in the day.
Our clinic visit went well. Cori said that if our regular pediatrician wants to stay involved with Madeleine, that that is great and that we should still take her to her regular check-ups. 🙂 I need to schedule her 12 month check-up now! We have her 3rd course of chemo scheduled for next week. It will be sort of a combination of the first two rounds, using one drug from each of the first two courses. Cori knows how I feel about taking home a baby that could be getting sick, so she scheduled us for in-patient chemo. We have our pre-admit appointment on Tuesday and check-in on Wednesday. It will be 3 days of chemo, so I am thinking we’ll either be coming home next Friday or Saturday, depending on how she’s handling things.
Then it was off to Rehab and Physical Therapy. I saw both of them at the same time and PT gave me some stretching/ankle movements to do with Madeleine. I have been doing those today and we have been keeping her braces on her legs more than just 2 hours a day to try to keep her Achilles tendons stretched as much as possible. When we’re in-patient she will be making new braces for her since the ones she has were very quickly made and don’t stretch her tendons as far as they could/should.
The rehab doctor spoke to us about running some tests to make sure her bladder is fully-functioning. If it’s not, there are some problems associated with that. I won’t go into it all in detail, just because we don’t really think that she is having bladder function issues. The tests are just preventative to make sure there aren’t any issues. If it is a problem, there are measures they can take to ensure her bladder is fully emptying.
The rehab doctor is also the doctor that we will see in the coming years who will help Madeleine with any medical equipment she may need (walkers, wheel chair, etc) in order to be independently mobile. He will help her (if necessary) learn how to do transfers from a wheel chair to a bed, to the toilet, to a chair, etc.
Then it was off to grab some quick lunch while her LMX cream worked it’s magic on her port pre-blood-draw. When we went back to have her blood drawn, they couldn’t get the blood to draw. They tried re-accessing and it still didn’t work. At that point we had to go to her neurology appointment, so we left and said we’d come back after neuro.
The neuro doctor that we saw, Dr. Ong, was the same doctor who saw her in the ER. The same doctor that was the on-call neuro who our pediatrician’s office had spoken to. So he has known her throughout this entire ordeal, and it was nice to see a familiar face. He said he’s been following her treatment through the information in the computer file. Evidently there are ways to tell if her reflexes are reacting in a way that shows muscle weakness due to spinal cord damage or muscle weakness due to chemo, steroids, etc. It appears as though her damage is at the spinal cord level. 😦 Not great news. The attending that came in after Dr. Ong did his initial examination said he is very, very concerned about her ability to recover from this. So add him to the list of doctors that have now told us that her chances are not good. ***sigh*** It’s getting hard to hear that every darn time we see a doctor.
The attending also said that he is concerned with how quickly she is tapering off of the steroid, considering that chemo and killing cancer cells tends to cause more swelling (aka: adema). He is worried that since her tumor is still putting some pressure on her spinal cord, that this would cause additional nerve damage if she was not on any steroid at all. He said he would call Dr. Park and discuss this issue with her, so I will talk to them about that further prior to chemo. My fear right now is any further damage to her cord which could cause bladder/bowel function problems. However we don’t want any of the nasty long-term side-effects of the steroid, so I am feeling quite unsure of what to do. I suppose Dr. Park will have some answers for us at our next appointment.
Once we were done at neuro we went back to HemOnc for the blood draw. They wanted to make sure that her port was ok, so we waited at radiology for a bit. After her x-ray, we went back to HemOnc and waited around for even more time while they found a doctor to read her x-ray. Turns out everything was fine, so they tried re-drawing (her third poke of the day) with a longer needle and that finally worked.
After all was said and done, we were at the hospital from 9am-4pm. With commute time, it was a 10.5 hour day. Not my idea of fun, and certainly not Madeleine’s. Poor thing was a mess by the end of it all, not that anyone could blame her.
On the baby movement front, we have seen some definite improvement happening since starting back on the steroids again. And I am not seeing decreased movement again, as I had before when we were tapering off the steroid. In fact, she is moving even more!! Her right leg straightens really regularly and she even lifts it up, rotating at the knee, when she’s sitting in her high chair and stroller. 🙂 Her left leg is still moving less than the right, but in the last two days it seems to be moving a slight bit more. When I bicycled her legs today, she even put up some resistance to me! And when she sits in her “hard” high chair that provides less support, she is now sitting up instead of tipping over like she had been a couple of weeks ago.
So, there’s the update. A long one since we had so much going on on Tuesday. We’ve been scheduled for another lab/clinic appointment on Friday morning. Alex has a follow-up appointment with his ortho surgeon from his neck surgery that same morning, so he won’t be able to go with us.