It has been awhile since I posted many photos of Maddie, but I finally got around to doing it. You can check them out by clicking on the link in the right hand column under Photos (New Years 08 – April 09) or clicking here.
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
As much as we love the people on the 11th floor at Levines, we are incredibly glad to share the news that we are at home. It doesn’t mean that Miss Maddie is quite back to normal yet, but we just felt she needed to get out of there. She seems much happier and has been much more herself since we got to walk out of the hospital this morning at 8 am. We have already had a visit from the home health nurse to show me how to administer her IV antibiotics via her port here at home. She does still have her port accessed which means we cannot play quite as freely as we can when she is not having to receive IV meds. But we are thrilled to be home, and she really seems to be too. Two weeks is a long time to be inpatient.
We will restart seizure meds today too. The seizures are back but are milder than they have been in the past. We are not sure, but it seems like she may be having some different seizure activity than in the past. Her MRI was basically unchanged, so it does not appear that there was any new damage done by the septic shock and its treatment. So hopefully we will have some success with the seizure medication, and if we don’t we will just try another one. We will find a way to get some control over the seizures!
Right now we are just ecstatic to be home and that Maddie seems to be improving a little each day. We had an amazing view of the storm that came through Charlotte last night from our wall of windows on the 11th floor of LCH. Today is beautiful and we have already taken Maddie for a jog in her stroller. We are so thankful to have our precious girl back at home and getting better. Our lives have not been “normal” in a long time, and we don’t know how normal we can ever be again after going through all if this. But that lack of normalcy has made it possible (and maybe forced us) to learn to embrace the small wonders in life. The dogwoods look absolutely beautiful right now. And this recent crisis has meant I got to spend the last two weeks with my husband….what a concept! I wish it had been under better circumstances, but you have to look for the positives sometimes.
Happy Easter everyone!
Liz, Brandon, and Maddie, our miracle
I just wanted to quickly post that we are still in the hospital. She has started to talk to us a bit more, though it is clear she goes back into her shell whenever we do anything “medical” to her. She is by no means back to “normal” for her, but we are just ready to get out of here. Her Infantile Spasms have started to come back, and she is not currently on any seizure medication, so we expect to start something for them soon.
We are currently waiting to hear the results of her brain MRI and her LP yesterday. We also hope to get an idea if when we might break out if here as well.
Thanks for continuing to pray for our sweet Maddie. Have a happy Easter, too.
Liz, Brandon, and Maddie
At our last update, we felt things were improving, though slowly. Unfortunately, since Thursday evening Maddie has gotten less responsive to us and is basically sleeping or nursing all day. We have begun to see her seizures coming back (they stopped when she first got the fever that led us into the hospital). They are different than before though, and sometimes it appears that she is “absent” while she is awake, so that may indicate the development of a new seizure type. On Thursday, she was talking, played a little, and even ate a handful of cheerios. Since that evening, she has barely interacted with us at all.
Needless to say we are devastated. She just survived an incredibly life threatening infection, and now the seizures seem to be taking her from us. We have had an EEG, which did not fully explain what we are seeing. We will probably have another MRI of the brain early this week to see if there is any new damage. We are actually taking her off her seizure meds (since it does not seem to be working anyway) in hopes that we can see what is really going on right now.
Please keep her in your prayers that we begin to get some interaction with her and that the seizures do not get too bad.
Liz, Brandon, and Maddie
I am happy to report that we were moved out of the PICU yesterday and back up to our old home on the 11th floor! It is great to see familiar faces who know how amazing our Maddie is. I can’t even describe how great the care was at the Levine Children’s Hospital PICU was for us. We went down there Sunday morning early and had incredibly professional and caring nurses and doctors every minute through when they let us go yesterday. I hope never to go back (except for a visit), but I cannot imagine a more competent staff and excellent facility to save a child’s life. We feel incredibly blessed to still have our princess with us.
In preparation to be released yesterday to the 11th floor, Maddie had three lines removed, a central line, an ART line, and a peripheral IV. She seemed to relax after their removal and has basically just been sleeping ever since. Her breathing is still a little fast and shallow, so we hope that improves soon. She also continues to have low grade fevers, and she still feels pretty awful. We hope to see continued improvement each day, and that this will all seem like just a bad dream soon.
I don’t think I have ever explained how this all occurred, so I will try to give a brief explanation. Maddie has had recurring UTIs for last year. We have not yet found the cause of them, but in her case a UTI became a kidney infection which then became an infection of her blood. She has been on steroids for over 40 days, and they may have masked her symptoms a bit. So we suspected a UTI when she was acting like she was in pain Saturday afternoon. By the evening, she was developing a fever and we rushed straight in to the hospital. Our oncologist started IV antibiotics immediately to treat the UTI. By 6 am Sunday she was in septic shock and they moved us to the PICU. We could not get her blood pressure under control and she was starting to have trouble breathing on her own. They opted to intubate before she crashed feeling that a crash was imminent. We are so thankful that we had a positive outcome as it was incredibly uncertain.
Maddie is definitely improved from then but we still have a long way to go. Yesterday, we received the result that the previous day’s blood culture was still positive for the bacteria that caused the sepsis, so we are praying that the newer cultures remain negative. She has just begun to eat again, but she basically breastfeeds and sleeps around the clock. We are hoping that we begin to see some improvement in her energy level soon. Thanks so much for all of the prayers, but please do not stop just yet.
Love and thanks to everyone,
Liz, Brandon, and the incredibly amazing Maddie