Tag: baclofen

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Lauren’s Continuing Journey

July 3, 2023. Yesterday was quite the busy day but a successful one. Lauren’s Fundraiser Market may have been a lot of work but I think it was worth it. Sometimes you do what you have to do in order to make it. It was pretty exhausting just the same, especially having to leave for Montreal the next morning. But here we are, boarded our plane, waiting for takeoff.

Lauren’s journey begins. It was only a few weeks ago that we were in Montreal for Lauren’s trial surgery for her baclofen pump, which was quite successful. So now we are going back to have the pump permanently placed inside her abdomen. It’s bitter sweet really, we hate having to put her through yet another surgery but we know that this surgery will give her a better quality of life, less pain, less spasticity and better function overall.

The journey itself; from getting here to there, is very difficult on all of us. But I guess you do what you have to do, it’s not like we have a choice and really we would do whatever it takes to protect both our children. So it’s, Montreal here we come, for about the millionth time it seems.

July 6,2023. Here we are sitting in the waiting room of The Sick Kids Hospital in Montreal. Lauren just went into the OR for what’s to be a 3 hrs and twenty minutes surgery. The worry, anxiety and a million different emotions run through your mind. There are no words to really describe how you feel, you just wait.

It’s 12:50 pm, Dr Farmer just returned from the OR and came to the waiting room to speak to us. You literally freeze for a moment in time. The surgery went well and he was very pleased. What a relief! Now we are waiting for her to get settled into recovery and then we can see her. Needless to say, we can’t wait.

My cellphone notifies me of a text. It’s the recovery room, telling us that Lauren is now ready to see us. She’s still asleep when we get there. Only a few minutes later and she starts to move her eyes and she’s awake! Oh my, I wish I could trade places with her; I would. So hard to watch her lying flat on her back once again. But she really is a trooper; courageous and brave, a warrior princess for sure. So now the next leg of her journey begins…..

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Lauren’s Next Journey

“When a train goes through a tunnel and it gets dark, you don’t throw away the ticket and jump off. You sit still and trust the engineer” Little did I realize when I posted this quote by Corrie Ten Boom, to my Facebook page, that it wouldn’t be long after that my trust would be put to the test. Trust isn’t something that I do easily. To trust is to put your firm belief in the reliability, truth, ability, or strength of someone or something, now that is not easy to do.                                                                                                                                                                                                          A good example of trust would be; when we go for surgery and  are about to be put to sleep, you have no choice but to put your full trust into the medical team that they will do everything humanly possible to perform a successful surgery. Are we guaranteed beyond a shadow of a doubt that everything will go fine? No we are not! But we have to trust that it will. So we have to willfully surrender our very lives to the medical professionals and hope that all will go well. TRUST!

Just after I posted that quote, Lisa’s phone rang. Now it’s been months that we have been waiting for a call from the Shriners Hospital for Children in Montreal. The purpose of this call would be to notify us of a time when Lauren’s surgery would be taking place. The surgery itself would be the first of two, the other which would depend on the success of the first and would be done at a later date. This first surgery would be a trial surgery to determine if a baclofen pump would be suitable for Lauren. The actual baclofen pump implantation is a surgical procedure performed to permanently implant a pump that delivers baclofen to the spinal fluid to treat Lauren’s severe spasticity and dystonia that is refractory to oral medication in Lauren’s case.

I knew by the look on Lisa’s face, what this call was all about. As much as we were anticipating this call, you can never prepare yourself for it. We knew that this was just the beginning of another long journey that we so didn’t want to put Lauren through again. The call confirmed that Lauren’s surgery would take place on June 7th. You see, Lauren has already endured more pain in her short life, then most adults experience in a lifetime. Where is the fairness in this? Why do we have to expose her to this trauma once again? Why can’t God just release her of this horrible disease? Didn’t He say, “Suffer the little children to come to me and forbid them not…”? So many whys! Not a lot of answers. I believe we are well into our right to question. Who in their right mind would want to expose their child to pain?

But yet there are no other alternatives, no other choices! So we are left to, TRUST! Trust that the medical field know what is best for Lauren and that God knows best. Both of which require us to surrender our trust and faith into someone outside ourselves. Placing Lauren’s life into the hands of someone else other then our self. Now, that my friend,  is not easy to do. Being a Christian doesn’t make that decision any easier, doesn’t mean that we can’t question, and have concerns and worries. After all, we are human and God totally understands. Jesus himself questioned God when He said, ‘My God, my God, why have you forsaken me?’ WHY?

In spite of our human weakness, we realize we have to trust, once again, into an higher power.  For without trusting, what are we left with? Nothing, no hope, nothing. So we will trust and pray that everything goes well and this surgery will give Lauren a little better quality of life. It’s all we can ask for.

 

 

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Lauren’s Incredible Journey Through Surgery

Having a child with  special needs, opens your world to an whole new perspective on life. A world that is challenging, demanding, empowering, loving and hopeful. There are definitely many ups and many downs, each one bringing with it a flood of various emotions. With Cerebral Palsy every day is a new day, each day a new challenge, you never know what’s waiting around the next corner.

That’s what brings us here today at the Janeway Children’s Hospital. Lauren was admitted yesterday and her surgery is scheduled for 11 O’clock AM. Lauren will be having both a femoral and acetabulum osteotomy on her left hip.

Lauren was just taken into the OR and won’t be back until at least 4 O’clock, that makes it over a four hour surgery. You have no idea how we are feeling at this very moment, there are no words to describe it. Now we have to wait, there is nothing in our control. Her life is now in the doctor’s hands and we have to surrender her care to them. But I have to believe that there is a greater power at work here and He will take good care of her and bring her back to us.

It was a very long day, longer then expected really. She got back to Special Care around 6:30pm. Not all that responsive, not wanting to wake up, very weak. But that is all to be expected.

All day Thursday she slept most of the day. Her hemoglobin was down but they wanted to wait and see if she could build it up herself. The following morning it went down again so they had no choice but to give her a blood transfusion. Hoping this will help with getting some strength back and make her feel a little better. The neurologist is coming in soon. Her speech is very different, slurred sort of, could be meds but they want to make sure. So far now that’s the update; now we just wait again.

Neurologist confirmed that it’s her seizure medication plus all the pain medication, that’s making her over medicated and thus the slurred speech. So now she as to stay at the hospital until that’s clarified. We thought we were going to get out today (Friday) but that’s not going to happen. Hopefully tomorrow things will get better.

Well, tomorrow is here (Sat. May 19) and things are looking a little better. Lauren had pain through the night and still has slurred speech this morning. They done blood work again to see what her hemoglobin levels are; hopefully they are increasing. She’s still lying on her back and  hasn’t been out of bed or sat up yet. She could really break your heart if you let it.

Logan as been a real trooper through all of this, he’s spent most of his days at the hospital with us. He is Sissy’s biggest fan and was very upset when she came up from the OR. He couldn’t understand why Sissy wasn’t talking to him, that was a first.

It’s Lauren’s fourth day in the hospital and she’s doing a lot better. She sat in the chair and went for a ride in her wheelchair. She still has pain and spasms but it’s mostly controlled by medication. Taking her home is going to be the hardest, getting accustomed to her being in a spica cast is certainly going to be a challenge.

Lauren is getting back to her fiesty self, thank God. She’s ready to exit this place and get home. It’s Monday (she came in on Tuesday) and it looks like we are going home. Scary and excited at the same time. She requires so much care and lifting; we know it’s going to be rough but we will do it.

Once she’s home, let the healing process begin. Because once she’s recovered from this surgery (around 3 weeks) it’s back in for more surgery on her right hip. Oh my, I don’t know how we are going to put her through this again; this will be her third hip surgery. It sounds so cruel and it is but it as to be done. It’s all part of a plan to help release some of Lauren’s spasticity so she can be a little more comfortable and help with some mobility. All of this seems so unfair, so cruel, so senseless and there’s not a thing we can do about it; helpless.

Once both hips are back in socket and she is fully recovered from both hip surgeries; it’s then we are off to the Children’s Shriner’s Hospital in Montreal. It’s there she will have a baclofen pump trial; to see if the baclofen will help to release some of her spasticity. Baclofen is a medication used to treat spasticity. If the trial works then she will have a surgery where a puck-like device will be inserted under the skin of her belly, called a baclofen pump and a tube going directly to the spine with a constant supply of baclofen when needed. Then the pump will need to be refilled every six weeks and the pump itself replaced every seven months. Which will have to be done surgically each time. Hopefully the baclofen pump will work for her. If not we are running out of options.

The only thing left would be the rhizotomy surgery on her spine. Which she is not a candidate for right now. This surgery is very invasive; they go into the spine and cut certain of the nerves that controls the spasticity to certain muscles and permanently release some of her spasticity. This is the surgery that we feel as her parents, would benefit her the most. It would give her some form of mobility and comfort; long term. Unfortunately, we are not the ones making that decision.

All of this seems so overwhelming as parents; and it really is. Everyday is long, tiring and unpredictable but we do what we have to do. Life is so different now, we have to trust in an higher power for strength because we could never do this in our own strength. I wish I could take Lauren’s CP away, she is so bright, funny, strong, courageous, beautiful and deserves to walk. Sometimes life is just not fair!