Monday, December 31, 2012

A little more current

There is so much that has happened since Peanut's first procedure. So, let me 'splain..."No, there's too much. Lemme sum up." ;) Besides what the doctors and nurses called a minor bleed (but felt like a pretty major bleed to my husband and I) after Peanut's first procedure, her recovery went very well. We left the hospital after that first procedure with the date for the next. However, we felt like we had a little more hope this time. The next procedure was scheduled for early December. This time, my husband and I waited alone. It was still very stressful as we tried to trust God with our daughter. After the procedure we met with the doctor again. He was again very pleased with the results. He didn't think he would be able to reach the aneurysm to embolize it because of the "s" like curve of the artery. There have been so many things along this road that have only one explanation - God's hand at work in Peanut's life. We are back to the waiting game but feel much more at ease with this. We know that 50% of the AVM has been treated - and that includes both aneurysms within the AVM. We knew with the holidays being just around the corner, we probably wouldn't hear anything until mid-January. We have settled into our routine and take each day as it comes.
The New Year is always a great time for reflection on the last year and planning for the upcoming year. At our Christmas Eve service, our pastor used our story as an example of God's ability to take a situation that is completely hopeless and filling it with hope. So, my husband jokes that our New Year's resolution is to not be a sermon illustration! ;) The New Year has always been one of my favorite holidays. I feel like it's a new beginning - a new chance to do things right. This past year has been one I hope to never repeat. However, it has also been the year of our greatest blessings from God. One year ago I could never have imagined all that the upcoming year would have in store for us. It's been a rough, emotional and overwhelming ride. I am grateful for the many ways God has intervened in our life - from clearing the traffic as my husband drove incredibly fast to get us to the ER, to guiding the doctor's hands through procedure after procedure, to calming us as we learned how to take care of a child with diabetes and so much more. So many "small" things and many, many huge things! We are blessed to have reached the end of this year as a family of four. We are blessed to have these 2 precious children to raise. We are blessed with the health of both of our children. We are blessed to be in a home filled with love. We are blessed to share our lives with my sister, brother in law and their 5 children. We are blessed to have jobs, health insurance, a home, and bills that are paid every month. We are blessed to be here still, able to continue striving toward a deeper relationship with God. Through this last year, I have learned that there is SO much room for my faith to grow! As I look forward to this next year I can clearly see changes that need to take place. First, I need to spend more time in God's word. This is the part of a Christ followers life that I have struggled with. I simply want this year to become the first year in as long as I can remember that I read some part of scripture each day. At this point I don't care if it's only one verse. I just know I need to deepen my knowledge of God's Word and implant it in my heart. I got a day-planner for Christmas that has a devotional for every week with additional Scriptures to read each day. So, that is my starting point. As far as other goals for this next year - I don't have many, mostly because it's too hard to guess what this next year will hold for us. As always, I want to lose some weight and get my body to a healthier state. After Peanut's bleed in March, I comforted myself with food. My body clearly shows that now. So, I will work on eating less, eating healthier, exercising at least 3 times a week and walking at least 10,000 steps each day. I strive every year to spend more time with my kids. To be available to them and to enjoy my time with them. This next year will be no exception to that. I want my children to remember that I was there. That I played with them, did crafts with them, laughed with them and loved on them. This next year is bound to be one of surprises, hope and certainly, one of blessings. I look forward to seeing where this journey will take me next.

Sunday, December 30, 2012

Peanut's First AVM procedure

Monday morning arrived quickly enough. My sisters were at my side as we packed everything up to head to the OR waiting room. I was thrilled that Peanut wanted me to hold her on my lap in the wheelchair as she went to her procedure. I cherished every minute of our ride. As we rounded the corner, we met our pastor in the hallway. We all walked together to take Peanut to the basement where her procedure would take place. Once we got outside the waiting room, it was time for the aunts and pastor to say goodbye to Peanut. My husband and I went down to the nurses station with her where they gave her some sleepy meds through her IV and it was a matter of seconds before she was completely relaxed and pretty out of it. We kissed her goodbye and handed her over to the nurse who carried her to the OR. We watched them walk away with our precious daughter thinking we may have just handed her over to someone for the last time. We joined our family in the waiting room with the knowledge that her procedure could take as long as 8 hours. It wasn't long before more family arrived to sit with us and wait for news from the doctor. We knew we were in for a long wait but the time passed as we chatted and played on our phones. The worst part of the wait was that we were directly facing the door that the staff came through to get family to go see patients. So, every time the door opened, we held our breath. One of the anesthesiologists came in about an hour after they had taken Peanut back and let us know that she was doing really well and that they had just started the procedure... which meant the 8 hour countdown started an hour later than what we originally thought. We tried to settle in for the long wait. Around 11:30 Peanut's doctor came in and was working behind the receptionist desk for a minute. I wasn’t sure what was going on but my heart was racing and I was desperate to know something! Finally, he stood up and called us back. We sat down in the conference room and he explained that everything went very well. We both breathed a HUGE sigh of relief! Most of the risks were things that would take place during the procedure so there was definitely a sense of relief. He explained that he was able to target the aneurysm as he had hoped he would be able to do. He told us he was “very happy” with the surgery which made us feel incredibly happy. He informed us that they had found another aneurysm. So, she would need to undergo this same procedure in 6-8 weeks to target that aneurysm. At that point, we didn’t even begin to think of 6-8 weeks from now. We were just thrilled she had made it through surgery and that he was able to hit the area he was aiming for. The doctor walked us to yet another waiting room. After a little bit more of a wait, they called us back to see Peanut. When we arrived she was sleeping comfortably. She looked so peaceful and we were just thrilled that she wasn’t awake and fighting (which was how she had reacted after her angiogram at the first hospital stay - a fight that lasted 2 hours!). There were still a lot of unknowns but I was completely overwhelmed with gratitude that she was still with us. Her nurse gave us all the details on her status and within a few minutes prepped her to go up to her room. My husband and I walked with Peanut as they transferred her to the PICU room. She woke up a couple times and we were able to chat with her. She wasn’t responding verbally but would shake or nod her head in response. My husband was quick to point out that she was answering appropriately and what a great sign that was - she understood us! We got her settled into her room and she was awake for a little bit but very sleepy. She slept quite often - every once in a while she would open her eyes and find me in the room. I assured her that I wasn’t going anywhere and I was right beside her. After doing that several times, she fell asleep and slept soundly until about 4 hours after the surgery was finished - the time she could begin moving around. She began speaking with us and there was not one change in her speech! She understood us and was able to express herself as well as before the procedure! Praise the Lord for that! We were overwhelmed with gratitude for God's hand in all of this as well as surprised that he would give us yet another miracle! We knew that God's had played a huge part in the success of this procedure and took the time to just praise God in the midst of this and continue our journey of learning to trust Him. We were also reminded that His ways are higher than our own and there was no way for us to figure Him out. What an incredible journey this has already been!

Friday, December 28, 2012

Our second diagnosis

     In the late summer, as we prepared for the first day of school, Peanut developed some new issues that concerned us immediately. She was drinking a lot of water every day - and consequently was needing to use the bathroom every 15 minutes or so. We sat down and calculated how many ounces of fluids she had in a day - it was between 40 and 60 ounces! We were astonished that she was drinking so much. My husband immediately wanted to call the doctor but I convinced him to wait one more day so we could talk to the doctor during regular office hours. The next morning, Peanut slept in later than she ever had. She had always been an early riser and with cousins from out of state staying with us, it was extremely unusual for her to sleep late at all. I decided to call her pediatrician and just run these symptoms past the nurse. The nurse said she needed to come in and set up an appointment for that afternoon. The morning seemed like a long one and Peanut ate more junk food than I had ever seen her eat - including several chocolate chip cookies (something she had refused to eat since after her first hospital stay). When we got to the doctor, they immediately did a blood sugar test. Her blood glucose was over 550. They told me we would be immediately admitted to the hospital - she was most likely diabetic. They allowed us to go home and pack our bags and then called us with the information to get Peanut admitted. We were overwhelmed and it was all I could do to keep from breaking down in front of Peanut. My husband had been dropped off by a co-worker at the doctor's office and helped us pack and drive out to the hospital. Once she was admitted, it was quickly confirmed - she has Type 1 diabetes. While we were overwhelmed that we had another diagnosis to work around, we were also thrilled that it was so easily manageable. Over the next 2 days we were educated about diabetes and trained how to test Peanut's glucose and administer her insulin. There was so much to learn but we simply embraced it. We didn't feel that there was anything else we could do - we had to do everything in our power to keep Peanut healthy. This meant a change in her diet, a regular schedule for her meals and snacks and constant monitoring. It definitely would change our day to day life but it was not life threatening. We were released from the hospital a short 3 days before school started. Those first weeks were tough - Peanut was tired of being poked and had a hard time understanding that this was the way it would be forever. I attended kindergarten with her so I could monitor her blood glucose and watch for any symptoms of complications from her brain bleed. I enjoyed volunteering in her class room but the blood glucose tests and insulin shots were incredibly draining. She fought us and she is stronger than she looks! There were times it would take both my husband and I to complete the blood glucose test and insulin shot. We had to literally hold her down and do all this through the tears in our own eyes, knowing this was what we had to do to keep her healthy. Those weeks were mentally and emotionally exhausting. We would reach the end of our day and just collapse. I remember thinking that this was too much - I couldn't handle all of this. But, by the grace of God, we made it through that tough road. Peanut adjusted and we learned that she did much better when she had her special bear - Rufus the bear with diabetes - with her. She would test his blood glucose and give him an insulin shot after she had hers. It was a tremendous help and comfort to her. So, once again, we adjusted to her diagnosis. However, we were very aware that her first diagnosis hadn't been addressed yet.
      Finally, in the fall, after many, many calls to the neurosurgeons office, we had a plan. The doctor's had decided to perform an embolization. We met with the doctor who would be performing the procedure - a minimally invasive procedure that still felt like surgery to us! The doctor reviewed all the risks of this procedure with us - going over the risk of death 3 times in that one visit. We left terrified that we didn't have much time left with our precious daughter. In just a few short weeks, she would be admitted to the hospital and undergo a procedure that even the doctor didn't have much hope in. We decided to live these last weeks like they were our last with Peanut. It was incredibly hard but we felt God's blessings even in these times. We planned special things with the kids. We made a trip to the zoo on an unseasonably warm day. We had a great time and had the zoo almost to ourselves! The animals were pretty active - we had a tiger charge us and jump on the all too small chain link fence that separated us and later we had a reindeer run along the path with us. It was a great afternoon! We also did family photos the weekend before her procedure. My husband and I had a hard time keeping smiles on our faces while our hearts were so heavy with grief. We spoiled Peanut, giving her just about everything she wanted. We spent more time together watching movies, playing games, and just cuddling. The day before we had to leave for the hospital, I spent a lot of time with Peanut coloring, drawing and enjoying being with her.Then, she decided she wanted to be tickled. I would tickle her and she would laugh the most amazing, from the tips of her toes, belly laugh. Then she would tell me to stop with a little tease in her voice and I knew she wanted me to keep tickling her. So, I’d stop until she said to tickle again and then I’d get that great laugh and laugh with her. We did this for quite a while and it’s something I treasured then and will always treasure. On the Sunday we would be admitted to the hospital for her Monday procedure, we sat in church together.  The thought ran through my head that if this was the last day we would live as a family together, I was glad we were starting it in church praising God and trusting Him with our daughter. We were blessed with the opportunity to annoint Peanut with oil and have the church pray over her and her upcoming procedure. She was excited to be prayed for and loved that they put a cross on her forehead. I cried as the reality of what we were about to go through became even more real. Throughout all these moments, all these memory-making times, it was an incredibly overwhelming time for us. I found myself often thinking, "This is the last time we will ____________" So, I was grieving - not for her because I knew God would take care of her - but for me and the life I was sure I would end up living without her. I cried for the things I thought we wouldn’t get to do with our daughter. I cried for the time we wouldn’t have with her. But I didn’t cry for Isabelle. I knew that if God decided to take her, she would be in the best hands possible. I knew He loved her more than I could. That He would take care of her far better than I ever could. I knew she wouldn’t have to be prodded and poked and go through procedure after procedure as a 5 year old girl. I knew her body would be perfectly healthy and that really seemed like God’s best plan for her. So, I was preparing to let her go and was broken hearted every step of the way. Looking back, I wish I hadn't spent so much time grieving but had instead spent that time praying and trusting God to carry us through this just as he had carried us through everything else before this. Her procedure date arrived all too quickly. We were admitted to the hospital the day before so they could monitor her blood glucose. That night my husband and I were tense, and overwhelmed. We watched Peanut fall asleep and cried. We tried to pray and then tried to sleep.

Tuesday, December 25, 2012

Our first hospital stay

     That night Peanut struggled to stay asleep. Her hands had been tied down to prevent her from pulling out her tube. I remember jumping out of bed in the middle of the night because I heard Peanut's nurse yelling, "No, no, no!" We quieted her down and held down her arms until the meds took effect and she was calm and still again. The next several days were overwhelming and intense. We eventually learned that Peanut had an AVM in her brain - a tangle of unnecessary arteries and veins with no capillaries between - causing a high risk of bleeding in the brain. There was no way to determine what if any damage had been done already from the bleed she had suffered until she returned to consciousness. Although it seemed like we waited forever, it wasn't long before she awakened. I quickly noticed that she was behaving as she had about a year ago - her speech was more baby-ish, and her movements were not as fluid as before. She had difficulty holding a spoon or crayon. However, as time progressed all of these deficits disappeared. We have had an incredible journey of miracle after miracle. It was overwhelming, scary and amazing to be sent home a mere 6 days after our daughter had been at death's door! After an angiogram to map out the exact location and size of the AVM, doctors decided they needed to have a conference with all the doctors who could potentially treat her to determine the best method of treatment. We were aware of all 3 options for AVM treatment - surgery, embolization and radiation. The pros and cons of each were reviewed with us but ultimately we were sent home with no plan for treatment. However, we were pretty certain that surgery would not take place - the AVM was too deep in the brain - in the language center of the brain which explained her baby-ish speech upon awakening from her coma.
     Once we returned home, Peanut had round the clock headaches but they were manageable with children's Tylenol. We returned home afraid to have her do much of anything a normal 4 year old would do - run, jump, play, swing, anything that involved lots of movement or presented the risk of bumping her head. We were overly cautious in the first weeks and months after she was released from the hospital but it made it easier to allow her to move around and play without feeling like we were taking too much of a risk. As the weeks progressed, we became anxious to hear from the doctors and know what our next step was. Within a couple weeks Peanut's headaches had stopped and she was able to go through her day without any Tylenol. We became more comfortable with the diagnosis and were able to enjoy our summer. The doctor's had a rough time getting everyone in the conference to discuss her case. We anxiously awaited and frequently called Peanut's neurosurgeon for word on what our next step was.