Tuesday, March 26, 2013

Hallucinations

     While we tried to laugh off some of Peanut's hallucinations yesterday, they have become much worse and quite a concern. She started with people, sparkles on the ceiling, floating objects. She started rubbing her coloring page and I asked her what she was doing. She replied, "I'm putting sparkles on my page!"  Last night she refused to sleep. She kept seeing bugs and bees and just didn't seem able to sleep. Around 2:30 my husband crawled into bed with her and pulled out a coloring book and crayons. I slept while they colored.... for 3 hours. Once I was awake again things were clearly worse. She was seeing mice and she didn't like what they were doing. She was very agitated and we couldn't calm her down. They called a doctor in and he ordered Benadryl thinking it was a possible drug allergy. While we waited for the Benadryl to arrive and then for it to begin working, Peanut was repeatedly terrified to the point that she curled up in the fetal position. She often cried about mice - at one point saying there was a mice in her doghouse (the plastic cover they put over her IV to protect it). When we took the doghouse off to show her that there was no mouse, she started screaming that it had gone in the IV and was hurting her. She was crying in pain, waving her arm around and trying to shoo things away. We tried to fight these hallucinations by telling her that they weren't real. At one point she looked up at the ceiling and screamed "A SNAKE!!!" It was the most terrified we have ever seen her and it terrified us. We tried to comfort her, trying to rub her back or her hand and she would pull away from us - something she had never done before. I asked my husband to pray over Peanut and she said no and then threw a fit when he prayed. She has always been calmed by prayer and eager to be prayed for as well as to pray for others. She said she was too hot so we took off her hospital gown. There just didn't seem to be anything we could do to console her. There was clearly something wrong and she was not herself. She didn't sleep at all throughout the night. I sat at her bedside and prayed over her. Prayed for God to fill her with His Spirit - prayed for God to remove the scary things she saw. Finally, the Benadryl began to kick in. She crawled onto my lap and I rocked her. She still would look around and start to scream or cry. We decided to try a different approach with the hallucinations. We began telling her that we would protect her and that God was with us and He would protect us too. I asked her if we should pray and she agreed so I prayed over her. I prayed that God would fill the room with His angels. That Peanut would be protected and that these scary things would be gone. I prayed that whatever was going on in her body would be healed by God. After our prayer, if she got scared I would say, "God is with us." and that seemed to calm her down quite a bit. I quoted scripture to her - only a couple verses that I could think of but I felt the need to address the spiritual side of this. I told her that she needed to sleep. When she said she couldn't sleep I told her God would supply all her needs - even the need for sleep. I quoted that verse to her, "God shall supply all your needs according to his glorious riches through Jesus Christ our Lord." Finally, she has calmed down but she is still convinced that what she saw was truly here.
     Eventually the Neurologists came in and talked with us. They didn't feel that this indicated an allergy to medication as the meds should be out of her system. They are concerned about seizures so she will be on an EEG monitor soon. It's also possible that it's a type of migraine although she hasn't complained about a headache at all. Of course, seizures are our biggest concern because her original bleed was precipitated by a seizure. She has been having these hallucinations for over 12 hours now so they are concerned and will begin searching for explanations. Looks like we are going to be here a little longer than we thought.
     Several hours later: Well, the EEG went well. Peanut didn't even fuss while all the wires were attached to her! She sat fairly still throughout the 20 minute test and had several hallucinations. She didn't fuss again when all the wires and tape were removed. She is such a trooper! The EEG results came back this afternoon - no seizures! Thank God for that! So, we were sent home with the hopes that some sleep, being in her own environment and getting back to her own routine would eliminate the unexplained hallucinations. For the 3 1/2 hours we were home before Peanut went to bed she only had 2 minor hallucinations. Here's hoping a full night's sleep eliminates the last of these hallucinations. We are so happy to see her sleeping peacefully!

Monday, March 25, 2013

Radiation day

     Well, we made it through the day. The morning went quite well. Peanut's halo was put on and her CT scan was completed and all seemed pretty good. They put her in a PICU room and allowed us to sit by her bedside. While it was rough to see her hooked up to everything it wasn't as hard as the first time we saw her this way. The "halo" looked nothing like the name suggested. She was intubated and had the standard IVs and all sorts of monitors. 


     The toughest part of the morning was when they decided they needed to do a chest x-ray to check her right lung. As soon as they started moving her, she woke up and grabbed her tube and tried to pull it out. She was coughing and gagging and breaking our hearts. We held her down while they ran for some medicine. Of course, the meds did not sedate her. She continued to gag and fight while we held her down through 2 more doses of meds. It took about 15 minutes for her to calm down. That was a terrible 15 minutes for us. We just didn't want her to remember any of that and here she was, awake and fighting. It was also difficult because it took us right back to our first hospital stay after her aneurysm bled. They had to work very hard to keep her sleeping. As she finally calmed down this time, the nurse said, "She won't remember this but you get to." While it was less encouraging, it was said more in the spirit of sympathy. Once we got past that, the time went by much smoother. And eventually, the X-ray showed that everything was perfect as far as her lungs were concerned.
     During the afternoon, I even managed to sleep for a bit. Peanut was taken over for radiation about mid-afternoon. A couple hours later, we were at her side and she was awake but very groggy. She could barely form words and found it difficult to move her arms - especially her right arm. Her dad and I, of course, were a bit concerned knowing that the AVM is on her left side and could negatively affect her right side. It wasn't long and she was talking a little better and moving her arm a little better. By the time we made it up to her hospital room, it was clear she was having visual disturbances - double vision and hallucinations - including seeing someone we couldn't see. I asked her if that person was wearing white. She said, "Yes. And blue pants. And socks." After spending a couple hours in her room we noticed depth perception issues as well as double vision issues that were strong enough to make it difficult for her to grasp something we handed to her. She also had trouble getting her food to her mouth. She occasionally would grab for something in front of her that wasn't there. She told us she could see purple sparkles above her. And when she began to fall asleep she would grimace then relax her face then grimace, then relax over and over for a couple minutes then she would awaken. While we were able to occasionally laugh off these issues (Like when she looked at her dad, giggled and said, "Daddy has two heads." so matter of factly), we are a little concerned. The nurses have assured us that this is normal after being under anesthesia for so long. To top it off, Peanut has not been able to keep anything down. She's been sick now twice and it's looking like it could be a long night. I know we will get through this but here's hoping she manages to fall asleep, stay asleep and stop getting sick. Through it all, God is with us and we are trusting Him to carry us through whatever may lay before us.

Sunday, March 24, 2013

Tomorrow is the big day

     Well, tomorrow we head out to the hospital bright and early - well, technically dark and early as we will leave before the sun is up! :) We've had a good weekend. Yesterday was especially nice. We took the kids to see the movie The Croods and Peanut was even able to munch on some popcorn while she watched it. Pumpkin ate his whole bag of cotton candy pretty quickly and later complained of a tummy ache. On the way home we stopped at Tractor Supply Co. to see the baby chicks and ducks. We spent the rest of the day at home. While Peanut napped, Pumpkin watched Jumanji with his dad and me. Then Pumpkin and I watched the Marx Bros. Duck Soup. Pumpkin wasn't all that interested but he tolerated it and I accidentally fell asleep about half way through!  We ordered pizza for dinner and watched Phineas and Ferb. It was a lazy day for sure but it was so nice to just spend our time together as a family relaxing and enjoying each other's company. I was able to take my time packing our hospital bag and really just enjoy our day.
     Today we spent the morning at church then stopped at the store to pick up a few things we needed. Then, we had lunch followed by a great Sunday tradition - mandatory nap day! It's our way of making sure Peanut gets a nap at least once a week. Pumpkin played quietly for a little bit then came out and vegged on the couch with us and watched another movie. It's just been a movie kind of weekend! The day is quickly flying by and tomorrow will be here before I know it.
     I am still working on giving my worries to God and focusing on the good things. It is definitely a work in progress but I think I am doing well to have identified this issue and be working on improving continually. I had a sweet friend express it so clearly today, "In Michigan, spring is a faith stretching season - we have to stretch our faith to believe that spring is coming. Right now you are going through a faith stretching season." What a beautiful way to think of this! Yes, it is difficult to not get caught up in worry. But just around the corner lies one of the most beautiful times in life! Spring is full of so much promise - so much life. Spring is the season of new beginnings. What new beginnings await for us remains to be seen but it is sure to be full of promise, life and beauty.

Thursday, March 21, 2013

Maybe it's me

     At work lately there have been some changes beginning to be implemented. As I learn more about the company I work for I am less than ecstatic about their policies. I have discovered that my hopes of advancing and working more hours would be a nearly miraculous change! In the course of several conversations with my co-workers I have begun to wonder if the changes that need to be made are within me. Perhaps I need to just be grateful to have any job. Perhaps I should work harder and not keep track of that. Perhaps I should not compare myself to my coworkers. Perhaps my life is not as difficult as I think it is. Perhaps I am the one making it hard simply by my outlook on life.
     This also expands to other areas of my life. I am really struggling with depression and worry right now. I know all the answers and I know what I am supposed to do. That does not make it easy. I am so scared that Peanut will have a seizure following her radiation treatment and then a re-bleed which will put us back to where we were a year ago. I just don't know that I could go through that again. Of course, as my co-worker pointed out today, I cannot control any part of this and I really need to just trust God with this. She acknowledged that this isn't easy but still is necessary. She is right. I have to stop worrying - there is nothing I can do to change the path that lies before us. I must lean into God, trust Him to carry us through whatever may come and be grateful every step of the way.
     I HAVE to start focusing on my blessings. There are many things in my life that I am unhappy with right now. However, if I could shift my focus I think I would be much happier. The things in my life that make me unhappy would would have much less power over my outlook if I simply was focused on something else - something positive. We have made it so far and there is so much to be grateful for. I just need to start remembering those things and continually praise and thank God for them.
     So, in light of that, today I am thankful for a loving family who has allowed me my space and time to process through a lot of this over the last week or so. I have been partially physically ill but more emotionally ill. They have not questioned me but have allowed me to escape to be alone as much as I needed. Their love and support go a long way to get me through each day. God has blessed me with the most amazing husband. He is always loving and caring. He goes out of his way to take care of me. He walks by my side when I want to start something new and exciting even though he doesn't have any interest in it personally. He is ever forgiving, constantly loving and kind. I could not have come this far in life without him. He has been my crutch when I didn't think I could walk another step. I have been blessed with an amazing son. He is a light in our life. His imagination is wonderful! I love listening to his stories as he carries me away on another adventure. He, like his father, is loving and forgiving. I do not give him the one-on-one time he wants and deserves but he doesn't seem to be affected by that. He loves me through my failings. He is a sweet spirit and I love him dearly. I have been blessed with a daughter with an amazing happy spirit. Through everything she has been through, she still maintains a positive outlook and a love of life. God has blessed her with resiliency, spunk, and stubbornness. God has given me the extra blessing of sharing my home with my beautiful sister, brother-in-law and their children. I cannot express in short enough sentences the tremendous blessing they have been to me. They are always loving and supportive - even when I come up with the most hair-brained schemes. They are Christ-followers who live what they believe. They are always encouraging me and I cannot thank God enough for sending them into my life! I will choose to focus on these blessings today. I will choose to focus not on the things I could worry about but on the things that are blessing me every day.

Tuesday, March 19, 2013

Still need to talk about it...

     Today, I found myself having an in-depth conversation with my co-workers about Peanut's health issues. I was surprised by how much I found myself feeling like I needed to have that talk with them. I have worked there for 5 months now and haven't really ever talked about the details of Peanut's AVM. They were able to ask lots of questions and I was happy to share pieces of our journey with them. It does make me wonder how long I'll have this need to talk about this period of our life. I suspect it will last as long as my memory does. It's an odd path to have walked. There are so many things that even doctors were surprised by. I'm still trying to wrap my mind around everything. I am eager to put all of this behind us and yet I realize that this journey isn't over yet. Hopefully, the scariest part of this journey is over but we won't have complete recovery for anywhere from another year to 3 years. It seems like a long time but I'm sure I will look back on it and say it flew by.
     There are times that the memories are so vivid it's like I'm reliving them. What a tough journey it has been! I don't say that to credit myself but more as my own realization. Sometimes, I am able to put all this aside and attend to the regular daily tasks of motherhood. Other days, I am hit again by the enormity of all my Peanut has been through and all that lies ahead. Her next treatment - radiation will take place in under a week now. However, I don't expect getting through the first several days after that (when she has an increased risk for seizure and possible re-bleed) will be as long and hard as getting past the mark where they are quite certain that no damage was done to her healthy brain tissue. I try not to think about all the what-ifs. I try not to imagine how we would get through a complication. It just feels like this journey has been long and hard enough. I pray it does not get harder.
     On another note, Peanut's BG numbers have been all over the place lately. One day in particular, her blood sugar went from from 49 late morning to mid 400s by mid-afternoon! She has been having a lot of high readings with a few lows thrown in just to confuse us. It's definitely been hard on me lately not to mention what it does to Peanut. Her body is so out of control that it just completely exhausts her. Because she is tired, it is impossible to reason with her. So, we are back to dealing with huge fits several times a day. Her moods seem to be all over the place. This, in turn, wears me out. I have found myself praying that God would just take her diabetes away. I know I just need to focus on today but when I think about dealing with these lows and highs for the rest of her life, I'm not sure I can do it. I'm not sure how to handle the worry that comes along with lows and highs. Once again, I know I just need to give it to God and trust Him. But in the midst of the rushing to get her BG back to a healthy level, that is hard to remember. And in the quiet moments after her sugar has returned to a healthy level, it's hard to process all of that through a filter of trust. Still a work in progress! :)

Friday, March 15, 2013

Something bigger out there?

     Do you ever get that feeling that there's got to be something bigger in your life? That you should be doing more? Having a bigger impact? Doing something of greater importance? I am there today. I know that the work I do as a Momma is of the highest importance and I love being a momma. It's the things I do apart from being a momma that leave me wondering. I keep thinking there has got to be a bigger job, better relationships, more that I should be doing. I work in a day care but our days are eaten up with the normal tasks of diapering, feeding, cleaning, napping, feeding, diapering. :) I just think there has to be more out there. What if my life has little impact because I wasn't brave enough to step out, take a risk, make some changes? Maybe all that I need is some change. Maybe there is something bigger waiting for me out there - it's just OUT THERE - not here. I am ready for a change. I am ready for a bigger life. I just don't know how or where to start.
     Then, of course, there is always that feeling that there must be a better life out there too. Maybe that's just my old "grass is greener" syndrome kicking in but it feels like the meaningful moments in life are few and far between. Is that just an indication of my own lack of action or inability to recognize those moments? I guess I'm just feeling introspective today. And I'm hoping to find a reason to hope for more than this. I'm hoping for a joy-filled life. I'm hoping to someday talk to my children and hear them tell me how wonderful their childhood was. I hope we don't screw this up.

Monday, March 11, 2013

Looking up

     Well, since my last post I have done much better having a positive attitude. I am really focusing and reminding myself how very blessed we are. It helps that this weekend we had some bright sunshine and the temps warmed up a bit! It was almost feeling like spring for a minute there! Tomorrow our temps come back down but I will continue looking up!
     The school year is nearly finished. It feels like just yesterday we were getting the kids ready for their first day of school! I was so nervous to not be home schooling this year! The time has really flown by! We are almost done with our 3rd quarter! Both kids are doing great. However, we are struggling to decide whether to hold Pumpkin back a year or not. He is doing great academically. However, his teacher feels that the struggles he is having are because he is young. Since he is asking to be home-schooled I wonder if holding him back a year might change things for him. He is such a great kid and I'm just not sure what this could do to him. I want him to be a confident leader. It is a difficult decision that we are approaching with a lot of prayer and open communication between us and Pumpkin's teacher.
     On the other hand we are certain Peanut will be repeating kindergarten. She has missed way too much school to not repeat. On top of that she has shown some difficulty learning things early this year - before her AVM was partially treated. She doesn't care - she loves school and I don't think she realizes yet that all her friends will be in another grade. She makes friends so easily and loves everyone so I don't have any concern over this decision.
     I will continue making my focus positive and seeking to acknowledge every blessing God sends my way! It will be wonderful to see what this week holds!

Saturday, March 9, 2013

Philippians 4:12-13

     "I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength." What a challenging passage! My husband and I were able to have a long discussion about this earlier today. We both feel that we are struggling with being content with our life. There are plenty of things we want - most of them requiring money - and some things we would like to be rid of - mainly debt! :) However, as a Christian, I am supposed to be living a life of trust in God and contentment with life. It is so easy to forget that I am incredibly blessed. It is so easy to picture an "ideal" life and compare it to my messy, busy, interrupted, and sometimes chaotic life. The result is discontentment. Granted we have had a rough year. However, that year is behind us!! I need to be present in our life today. I need to move forward and pursue the things I love. I need to treasure every moment I can get with my children. I need to make memories with my family. I need to contribute to the running of the household. I have sat back for far too long and just let things go. This is it. I have decided to move on. To refuse to allow a medical diagnosis to determine my whole life. Yes, it factors in but I choose to keep that part of our life from taking over everything. I have wallowed in self pity long enough. I will rise up. I will find the true me. I will work hard at anything that is put before me. While I may not completely understand this secret to contentment, I am going to start moving forward towards complete contentment - no matter what our circumstances. It's easy to point my finger and say "that is why I am not happy. That is why I am not content." However, I've lived that way long enough to know that it just leads to misery and depression. I will not give the devil this foothold in my life. I will choose to focus on the positive. I will choose to contribute in a positive and loving way to my household, my job, my volunteer work, and my relationships. This will not be as good as it will ever get. Things will change because I will change my outlook. And when this gets hard, I will lean into God to be my strength and empower me to be content. We are blessed. I have an amazing family and our journey is about to get a whole lot brighter!

Monday, March 4, 2013

School days, school days

     Lately Pumpkin has been talking about being home-schooled again. I have started to get little details from him that have surprised me quite a bit. For example, he told me that he got in trouble a lot. When I asked him  why he got into trouble he told me that he got in trouble for pouting. That just made me wonder what they were doing to my son that would make him pout. Yes, a bit of the mama bear coming out in me. Tonight I started asking him more pointed questions - were most of his class mates his friends? Was anyone mean to him? Did anything make him sad? He told me that there was a time he had kind of scrunched himself under his desk and his classmates stole his book from him. He said he took it back and that was the end of that problem. However, my husband and I were quite upset to hear that he was hiding under his desk! We asked if he did that often and he said yes, sometimes. This has so upset me that I'm not even sure I want him to finish out this school year there! Again, the mama bear/over-reacting protective mama coming out in me. It just breaks my heart that my son is having a negative school experience. I have heard many people say that this grade is just not the best group they have seen. I've also heard that the current grade below Pumpkin is a great group of kids with great, God-serving, spiritually-minded parents. If we follow the teacher's recommendation and hold Pumpkin back a year it seems he would be surrounded by better friends. However, I now have a son who really wants to be home-schooled and no great answers to his questions about the possibility of home-schooling. I just am torn. I don't want my baby to be upset and have so much to handle - it's been a tough enough year without adding junk happening at school! On the bright side, I don't have to make a decision right away. Also, the things he's told us about aren't that bad - they just are less than what we were hoping for. Overall, it has still been a good experience. I just wish our eyes had been more open when it came to the things Pumpkin was experiencing. I wish we had been more involved in his classroom so we could have seen some of these things in context. I wish there had been some sort of entry-test so that Pumpkin could have been placed in the grade below his current grade. I suppose this is the way it was supposed to be. Perhaps if I had known about these things when they happened, I wouldn't have been able to handle them. Also, home-schooling would not have worked at all this year. So, I am left with some thinking and a lot of praying to do. Either way, my husband and I need to get on the same page so that we can approach this with one mind and lots of support for each other.

Saturday, March 2, 2013

One year later

     Hard to believe it was one year ago that we rushed Peanut to the ER for what turned out to be an aneurism bleed (within an AVM) in her brain. One year ago today we started the roughest year of our lives. One year ago today we weren't sure our baby girl would survive the night, let alone another year.

     One year ago changed our life forever. One year ago took away our "normal" life. One year ago took away our simple life. One year ago forever changed me. This day has been burned on my heart. I will never walk through this day quite the same again. This day is not an easy day for me. So many memories are flooding back to me threatening to spill over in tears at any moment - no matter what else I may be doing at the time. This is the day that my heart was torn to shreds and I am still trusting God to mend it and restore me. 
     Peanut, on the other hand, doesn't even realize what today marks. She is still carefree, happy, life-loving and miraculously, healthy. We still have her. She is still the same girl she was before all of this. That alone seemed like an impossibility one year ago. She is a walking, breathing, learning, loving miracle from God. We chose not to mark this day off as anything unusual. We stuck to our regular Saturday schedule. Both Pumpkin and Peanut had a young authors conference at their school so we spent the morning there. It's amazing how different this day is from last year. We will spend the remainder of this day relaxing at home enjoying our family.
     These days will get easier I am sure. We will eventually return to a normal life. We will eventually stop having appointments with so many specialists and Peanut will eventually be risk free from this AVM. Until then, I lean hard into God, my family and closest friends. Without all the prayers said for Peanut and all of us I don't think we could have carried on this far. 
What a difference in our beautiful baby!