It has been a little while since I updated because we have been busy. We hoped to just rest and let her recover, but things just keep coming up.
This morning she was doing really well, walking on her own with confidence for the first time since coming home. Being in a hospital bed for two weeks left her very weak and her progress has been very gradual (or slow, but I am trying not to be negative). But this morning she seemed almost back to her normal self. But by this afternoon, she was having long clusters of seizures which leave her very unsteady on her feet. This was kind of a two steps forward, one step back day. Except that I am not even sure of what is back and what is forward right now. She just has alot going on.
In an attempt to simplify it all but to let you know what she is going through, I am going to just list it all into two groups, good and bad.
First the good. She is talking up a storm, is back to normal as far as interacting with us, and is just the sweetest most adorable child ever. Given the seizure disorder she has, the fact that her speech is improving right now is basically a miracle. The walking had vastly improved this morning, so we hope that continues.
Now for the bad. Somewhere in the last month, Maddie’s port, a device implanted under her skin that allows us easy access to a blood vessel, stopped working properly. We have been able to use it to give medicine, but it has been finicky about giving us blood return. Unfortunately we have to check Maddie’s blood for numerous things weekly. And if anything comes back abnormal, we have to check it again. When we were discharged from the hospital, Maddie had low potassium so we are having to check that frequently because it can cause the heart not to function properly. So over the last 10 days we have had to stick her 3 times in her arms, after having already stuck a needle in her chest in an attempt to get blood from the port. This is traumatic for her and since there is no time in the near future where we won’t need her blood all the time, she is having surgery Monday to replace her port.
Unfortunately, there is more. Maddie was on IV antibiotics that I infused at home after the sepsis until last Tuesday. These should have fought off all urinary tract bacteria. On Wednesday, we started an oral antibiotic to try to prevent further UTIs since they seem to be happening alot, and it was a UTI that led to the blood infection and the sepsis. By Sunday, she was having symptoms of another UTI and now she is on another stronger antibiotic while we wait to see what grows on the urine culture. Before this UTI, we already had an appointment set for today for a procedure called a VCUG where they inserted a catheter into her bladder and then used it to inject dye while doing an x-ray. This is to see what happens when she urinates and if there is any reflux of urine up into the kidneys. Our doctor was virtually certain we would see some reflux as that is the most common explanation for recurrent UTIs in a child her age. So we put her through the absolute torture of catheterization again today, and there was no reflux. In a way, this result could be added to the good list, but it means we have no good explanation of why she is continually contracting UTIs. So we will be seeing a pediatric urologist Friday to see if we can figure out what is going on with that.
Maddie also continues to have seizures around the clock every day. We had trouble restarting her seizure med in the hospital because it sedated her too much. Once she came out of the fog of all the sedation she was given while on the ventilator, we restarted the seizure med, but we had to wean back up fairly slowly again. We are now one step away from her maximum dose for this drug, and we have no seizure control at all. We will probably be adding another drug soon to see if we can get rid of the seizures. While they make her life incredibly unpredictable, we are thankful that she is still talking and (sort of) walking, because these seizures can cause such serious regression that she could lose those skills. She is defintely not developing on track anymore, but the regression seems to have slowed some. To address this, we have our first meeting with someone from Early Intervention Thursday morning to see what kinds of things we need to be doing (like physical and occupational therapy) to help her try to catch up.
We also plan to restart her oral chemotherapy soon. I originally said we were done with chemo when she was diagnosed with the seizure disorder. A few weeks later, our oncologist (whom we trust immensely) said that after seeing new data showing the high rates of relapse between 12-24 months after diagnosis with Maddie’s type of leukemia, he felt it would be unwise not to restart her chemo. The steroids we gave her to try to treat the seizures offered her some protection, but she has none now, and we plan to restart chemo as soon as she has recovered from this UTI.
So that is what is going on with Maddie. She has been a trooper through all of the needle pokes and catheterizations, but this child needs a break. Please think of her on Monday as she will undergo general anesthesia for the port replacement surgery.
Thank you sincerely for all of the prayers and emails and nice comments on the page over the last few weeks. They mean so much to us.
Love to everyone,
Liz, Brandon, and the always amazing Maddie