NINE - Rest and Recovery
Rest and recovery sounds easy doesn't it? It can be, but it can also be hard and mentally frustrating. We had arrived home on Friday June 18th and while I was soaking up on missed cuddles from Wren, I was also trying to figure out how the next coming days/weeks/months would look. But overall, given everything that had happened, I felt good! I was helping with Wren as much as I could but after being away for a while things got tricky. Within a day or two she wanted Mommy to do everything. She wanted me to lift her and still wasn't overly sure why I couldn't do that, or put her to bed. If you have ever had a toddler, you know that these frustrations and confused moments end up in meltdowns. She didn't understand why I was home but couldn't do what I used to do. This made everyone's job a lot harder. It was hard to hear her cry but I knew I was no help to her (this is every mothers worst nightmare).
As the weekend went on Tanner had mentioned that it might be a good idea to have his parents take Wren to Ottawa for the week so I could get a solid week of rest. I knew in my heart this was the best decision, but that didn't help with my mom guilt. I felt like I had missed so much time with her and wanted to be with her for every second of every day, but I knew that I needed to heal and make a full recovery so that I could get back to being the best and strongest mom I could be.
Tanner's mom assured me that they could stay and just watch her in Owen Sound and take her for day trips so that I could rest, and then at night I could have some cuddles and still see her, but I knew it wasn't the best option for Wren. The meltdowns came when I was around because she wanted me to do more than I could, and that usually happened around bed time. We had decided that an "out of sight, out of mind" approach was best for her so that her Nana and Papa could help and we could keep Wren happy. Sunday morning we made the decision to send her for the week, and this broke my heart. I cried for most of the day feeling that I was a terrible mom and that I was letting her down once again. Even though it broke my heart to see her leave for another week, I knew it was the right thing to do for her, for me, for Tan, and for Tanner's parents. At the end of the day, as a mother you have to put your child's emotions and well being before your own, no matter how it makes you feel. I knew she would be soooo happy to go with Nana and Papa and I would get some more time to heal. It wasn't easy when the goodbye came but we can't thank Tal and Sonia enough for taking her and spoiling her for that week!
Throughout my first weekend home my Mom and Sister really stepped up to help take care of the details for the coming months. They made a calendar for the whole summer and our families "signed up" to be here at home with us as much as they could. This way, I would always have someone with me and helping with Wren. My mom would help throughout the week when Tanner was working, my sister had scheduled weekends to come and take Wren, Tanners sister was scheduled for a whole week visit, and Tanners parents would visit certain weeks and weekends when they could. This really eased my anxiety for the next couple of months knowing who was coming and when. Additionally, they contacted Wren's daycare for me and explained that she would need to continue full time throughout the summer. This was not my plan pre-diagnosis, as I am a teacher and I planned to keep Wren home with me for the summer months, but it made sense that she continued with a consistent routine during this time.
With Wren gone and days being extremely quiet, I rested as much as possible. I had a couple visits with friends, and Tanner and I watched a lot of TV and ordered food. We had both just went through a lot and needed a re-charge. Tanner slowly went back to work, and my Dad would visit at lunch almost every day when he was done work. During this time I continued to take my prescribed medication and felt good. Given everything that had happened and even though I had 60 staples in my head, I felt better than I had in almost 10 years. My head felt clear, I wasn't having headaches. I was in shock, constantly thinking, "Is this how normal people live?". There was no pain and I felt "clear" (if that makes any sense). I was still moving slow and needing help with almost everything I did in a day, but I could tell that each day felt a little easier.
One of the biggest downfalls of rest and recovery, is that you usually have nothing else going on in your life. Sitting on the couch or laying in bed is great until you start to think about everything that had happened and everything you were feeling. You start to think about every little pain and wonder if it is normal and try to think that everything is okay. This is one of the biggest obstacles I still face to this day, the constant worry and anxiety around healing. There is so much riding on having a full recovery that I can't afford to have something go undetected at this point. I am working on dealing with these anxious feelings and thoughts, but it will take time.
The next part of this blog will be very important and intended for a specific audience. For those that stumble upon this blog and have had brain surgery, I am going to go over some of the things I felt physically while healing so that you can gauge if your symptoms are "normal" post craniotomy. When I was home and having odd things happen, I spent hours reading online to see if these pains and feelings were normal, or if I should be concerned, and never really found any answers. If you are going through a similar situation, I hope the following list finds you somehow, and brings you some peace. This is just based on my journey (and everyone's journey post brain surgery is different) but I just want to list a few things that can hopefully bring you some peace. It's also good to note that so far, all of my feelings and symptoms have not indicated any issues.
Swelling - this is normal and takes a lot longer to go down than you think. I had a lot of swelling around my eyes and the side of my face that my surgery was on. I still have a bit of swelling on the left side beside my eye, and I am almost 5 months post-op writing this.
Fluid movement - you will very likely hear these sounds that are like gushes of water in odd spots of your head. This is your body moving additional fluid and finding out where it needs to go within your body to be reabsorbed. Again, I'm almost 5 months post-op and I still hear a lot of odd fluid-like sounds in my head.
Plugged ears - I felt like I had water in my ear for at least a week!
Ringing in your ears - this was a super frustrating symptom, but it didn't stick around too long for me.
Clicking sound - I often would (and still sometimes do) hear a clicking sound in my head/back of my neck, this is also fluid reabsorbing
Hematoma's - these are pockets of fluid that can often get stuck under the skin and muscle. For me it looked like I had a goose egg at the top left of my forehead. Again the fluid needs to reabsorbed but they take a while to go away.
Shooting pains - these happened all around my head for a while but I was told that to expect them. I am now 5 months out and still get 3-4 shooting pains a day.
Burning - for a craniotomy they need to cut and then reattach muscles and nerves. When nerves regenerate it results in a burning sensation in your head. For me it was a similar sensation to when you burn the tip of your finger, but the pain lasts for a lot longer. This is probably the worst post op symptom, but it will go away with time.
Itching - itching on your head and around the incision means you are healing. At times it is super aggravating, but be happy - its a good sign!
Tingling - this may happen around the areas that are swollen but again give yourself time, these feelings also go away.
Body aches - the doctor will likely advise you to sleep propped up with no pressure on the side of your head that had surgery - at least that's what I was advised to do. Because of that, my body would become very uncomfortable and ache from being in the same position for extended periods of time. I am post op 5 months and am still scared to sleep on the left side of my head, so I'm still suffering from body aches.
Light headed - your brain has went through a trauma and is reorienting itself, move slowly. When I would get up, I would sit for a while before standing because my blood pressure was low after surgery and I was unsteady on my feet anytime I would try to get up too fast.
I hope these help with your recovery and can put your mind at ease. If you are about to go through something similar, have been through it, or know someone in a similar situation, I beg you to show them this post. As having gone through it, I think a list like this can really help!
LIFE LESSONS:
Mom guilt - It's real, and it sucks! I faced a lot of mom guilt not being able to be the mom I wanted to be for Wren. When I took a step back and looked at the big picture, I was having to do things that I know would benefit her, even though she doesn't understand that just yet. Whether you are going back to work, staying home with your littles, or even just going through small daily tasks like making them eat their dinner when they don't want to, you're still doing something that will benefit them, and that's being a good mom, regardless of how it feels! Being a mom is hard, and no one said it would be easy, but if you can continue to teach your little one life lessons and skills to become a loving and accepting individual, that's all you can hope for!
Time heals - there will be bumps and turns on your road to recovery but you will find your own strategies to cope/deal with your endless list of worries, hang in there!
MEDICAL SUGGESTIONS:
When I was discharged from the hospital, I didn't ask any questions. I think I had yet to comprehend what had just happened, but was also just so happy thinking the hardest part was behind us and everything turned out well. No matter what surgery you have gone through, ask what to expect in the coming weeks until you have your next follow up. When you are at home and worrying, if you have something to refer to that can bring you some reassurance that what your feeling is just part of healing, it can help with the mental game of recovery.
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