Keeping it interesting

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

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15 thoughts on “Keeping it interesting

  1. Hi Liz and Family,
    I truly wish that there was something that I could say or something that I could do to make all of this go away so that your sweet little girl could just live a normal life. Please know that I pray for your amazing little Maddie and your family everynight!!!
    Many prayers,
    The Cookes

  2. i worked for early intervention in jacksonville for three years…it is a great program..if you have any questions, email or call……

    so happy to hear a bit of positive, though still praying for continued progress for little maddie….

    just thought that i would share that aida tells me how cute maddie is everytime i pull up her page….

    thinking of you all…
    danielle (and of course, sam and aida)

  3. How much does one little girl have to go through. 😦 I’m sorry that Maddie has some difficult things to deal with in the next little while…it’s not fair. I’m hoping that one day you’ll look back at this time and know it was all worth it because something worked for her IS.

    I’m praying that you will be able to find something to stop the IS. Thinking of you all.

    Hugs, Kristine & Katie

  4. I can’t imagine what you all are going through and am so very sorry. Our prayers are with you and your precious Mattie. All our love

  5. Liz and Brandon –
    I can only imagine how tough it is right now but you said it yourself – Maddie is amazing! And so are you! She is one tough little girl blessed with parents who get her through everything with a smile on her face. All three of you inspire me every day and you are never far from my thoughts. I’m praying that Maddie sees better days very soon.
    Lots of love,
    Carrie

  6. Hugs to you guys….. May God continue to give you guys strength & peace during these times!!!!

    jana & gang

  7. Liz, Brandon, and Maddie,

    Thank you so much for the update. I can’t imagine how hard it must be hard because your time is so precious right now. I think you you and Maddie all the time. My heart just breaks for all that she is going through and I pray that the doctors can figure everything out and get her better.

    Kelly Erlain

  8. Your friends in Atlanta continue to pray for peace and comfort! I am in awe of the strength you show daily! Maddie is amazing! Wishing you smoother days ahead…
    Lori

  9. Yes Maddie really does need a break – and so do all of you….please take care of yourselves somehow through all this – I wish some peaceful moments for you. It is always amazing how our children just keep on trying through such hugely trying times…I had early intervention with Sophie about 2 months after dx, and it was very helpful – physical/ot, and general support.

    Good luck on next steps and may the port replacement go well.

    Connie & Sophie (all at 14 mos, now off chemo)

  10. Dear Liz,

    You must be feeling pretty worn out by now, but take strength in Maddie’s efforts to be a normal kid. This is a long journey and you have faced more than your share of ups and downs. I’m thinking of you and Maddie and praying that you find some help with the seizures and the infections. Take a deep breathe and just take one day at a time.

    Warmly, Tammy

  11. Oh I’m thankful they are starting chemo again. I’m also thanful for you posting and update on Maddie. I pray for her often and you too.

    Hang in there, she will come through all of this.

    Joany

  12. Prayers for Monday! I am happy to hear that her speech has not regressed tremendously. I do have a friend whose daughter went through IS, so I know what that can possibly lead to. Maddie is one tough cookie, but you’re right, she DOES need a break! And so do you…prayers for some relief and good news.

  13. Your daughter, Maddie, is beautiful. It makes me so sad to read all of the things that she has had to endure in her short life. I enjoyed looking at your pictures and think Maddie’s ‘crazy smile’ is too cute! It’s encouraging to hear that she is walking and expanding her vocabulary considering the ongoing seizures she is experiencing. I am praying for her surgery to replace the port on Monday, and for her healing of the leukemia and seizures. I am also praying for peace and strength for your family as you continue on this difficult and stressful path towards recovery for Maddie.

    Keep believing and thinking positive!

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