Pluggin' Along

We are now 12 days into our healing phase and we hit a snag. Matthew's top 3 stitches came out...and that top stitch had the knot that held the entire suture line in place. So, the top half of the incision has sutures that are not holding the incision together. Fortunately we are 12 days post op and a lot of healing has already been done. We spoke to the Nurse Practitioner from LCPH and took Matthew to see the pediatrician here in town. She applied steri strips to the entire incision and we are back to not getting it wet. We go up to Stanford on Tuesday for a check up with the surgeon, so they can reassess at that time. What else should I expect from a wild almost 2 year old boy?! Overall he is doing great. Still running a low grade fever but no one is concerned about that. We are all going a little stir crazy. Not being able to be around other kids, go swimming or to the park has been no fun. The doctor didn't want Matthew exposed to anything for the first 2 weeks so we have pretty much been at home. We take the occassional car ride over to A&W for some ice cream, then drive around and let the kids make the car as messy as possible. But hey...it is out of the house no matter how you look at it.

Sami is doing awesome. This is the first summer she has really known how to swim and she is loving it! Everyday the first thing she asks is "when are we going swimming?". We wait until Matthew goes down for a nap and then go outside until he wakes up. She is jumping off the side, doing cannon balls and having tons of fun. Today she went to Papa and Granny's house and jumped off the diving board for the first time! She is turning into a little fish. We can't wait until Matthew can get in again - we can spend all day soaking up the sun and swimming ourselves into blissfull exhaustion! Here are some pics we took the other night of her swimming skills..enjoy!

Big Sigh of Relief

Dr. Guzman called yesterday evening with good news. The pathology report was in - the mass was a benign lesion, most likely a hemangioma. We will go for our post op. appointment the beginning of July and Matthew will need a follow-up MRI in 3 months. After that...we can put this all behind us! PRAISE GOD!!! We can officially say that we have 2 healthy, beautiful children. Matthew is continuing to improve with each day. He is off of the narcotic pain medication and just taking Tylenol, sleeping pretty much through the night and back to normal. I never thought I would enjoy watching him fight with his sister, but I do. Every moment I am reminded how fortunate and blessed we are. Each day I have thought about his roommate from the hospital and the countless other children we saw while we were there. Most of them have long roads in front of them, roads I cannot imagine traveling. When I let my mind go to worst case scenario, I tried to picture how I would handle being that mom. I couldn't...I couldn't imagine what that devastation would feel like. I feel so blessed I never had to find out. But each day I will pray for all of those children, all of those families. And every time I feel frustrated or overwhelmed, I am going to do my best to remember what could have been and count my blessing over and over. God had a plan for all of this...maybe that was it? I know that we will be better parents, friends and supporters simply because of what we have gone through. And hopefully, somewhere in the midst of all of that, God will be glorified and His kingdom will be expanded.

Our Blessings

Matthew is continuing to amaze us each day with his ability to bounce back from this surgery. He is running, jumping, crawling....just about everything he was doing before surgery. Occassionally you can tell he is uncomfortable or a certain position hurts more than others - but for the most part he is back to himself. Cory's boss and his wife bought Matthew a "Get Well Soon" gift...he came by on his lunch to give it to Matthew. He and Sami both loved it! Not long after came a delivery from the gang at his work - balloons and goodies for not only Matthew but Sami as well. We are so blessed to have all of these amazing supporters in our lives. It is so easy to get caught up in the day-to-day business of life that we forget about the blessings that surround us. Cory and I are so fortunate to have not only wonderful family and friends, but employers who are understanding and supportive. Thank you just doesn't seem like enough...but THANK YOU!!!

The Comfort of Home

We made it home yesterday late afternoon. Matthew did really well on the ride home. He and I both slept the first half and he played happily the rest of the way. When we got home, my family and Sami were there waiting for us. Matthew was SO excited to see his sister. He is still a little wobbly on his feet, but he didn't let that hold him back. He was bending down to pick things up, throwing the toys like usual and trying to climb up into his favorite chair. Cory and I, of course, were ready to have an anxiety attack at any moment. We just want to put him in a bubble until he is perfectly healed! His night last night was wonderful...I think he would have slept all the way through if we hadn't been waking him up every 3 hours for medication. He woke up the same as he left off yesterday - ready to play! We will start cutting back on his pain medication today and see how he does. He should be taking just Tylenol by Wednesday. Matthew has got to be the bravest little guy...you would never know that just a few days ago he was going through a major operation. This has exceeded every prayer we said and hope we had - I could not have imagined all going this well! (Knock on wood) We will continue to pray that he only improves day by day and that the path report is as good as expected. PRAISE GOD! I am hoping to get some more pictures of him after his nap and I'll post them later on.

Post-Op Day 2

After posting yesterday we had a rocky afternoon. Matthew had been feeling so well in the morning and done amazing working with PT, but once he got settled in the pain hit. He couldn't get comfortable no matter what we did and the pain meds just couldn't catch up with the pain. He ended up developing a fever and stopped drinking anything. They put him back on the IV fluid and gave him pain meds around the clock. He finally started to perk up around 8pm and got some good rest last night. He woke up this morning feeling much better and actually let Daddy hold him for awhile. Most of the day yesterday he didn't want anyone to touch him nevertheless hold him. The "Dr. Guzman Team" came in this morning and removed his dressing. The incision is probably 5-6 inches long and looks really good. There is a small collection of fluid but they expected that and said it would go away over the next 2 weeks. Dr. Guzman said that he had expected our afternoon to go the way it did...the fever only lasted a short time and he is not concerned unless it goes over 101.5 F. They are giving us a prescription for the Lortab at home and they want us to rotate that with Motrin every 3 hours. They expect him to be close to normal by the end of next week. SO...we are heading home this afternoon!! We cannot wait to be at home and see our little girl we are missing so much. We are looking forward to putting all of this behind us! Thank you again to everyone who sent prayer, love, support and encouragement our way. We love you all so much!

Post-Op Day 1

Matthew is doing absolutely fabulous...even better than the doctors had anticipated. He slept the majority of the night and by this morning was up in the chair eating breakfast. He hasn't needed any more IV pain medication since we left the recovery room yesterday afternoon and he is tolerating the liquid pain medication very well. The Physical Therapist came by this morning to assess Matthew and work on getting him moving again. He was a little hesitant until he saw the beach ball and ride on toy she had for him. It wasn't very long before he was walking up and down the halls and throwing the ball to us. We went for 2 long wagon rides and he just now fell asleep for a nap. The doctors came by after the PT session and they are pretty sure we can go home tomorrow afternoon! They said that he can have a prescription for the same medication he is getting here at home, and there is nothing else keeping us here as long as he has a good night. WOW...the power of prayer continues to amaze us. We truly could not have even imagined this whole process going as well as it has. Praise God!

The Verdict Is In

We received a call from the surgery department around 9:45 am that the surgery was completed, they were able to remove all of the mass and that the doctor would be out soon to discuss the findings. Around 10:15 am here came Dr. Guzman with a big smile on his face. He was indeed able to remove all of the mass. He removed a small amount of muscle to make sure there were clean margins and the muscle did not look affected. He did have to shave some of the vertebrae, there was a small amount of blood supply coming from the spine but he was not overly concerned about that. Initial pathology did come back....NEGATIVE!!!! We, of course, have to wait for the final pathology report beginning of next week but by their assessment and the preliminary report it was not a tumor! GOD IS GOOD!!!! Thank you so much for your prayers, we are so blessed. Not only was the news wonderful, the surgery only lasted a couple of hours, he had minimal blood loss with no need for transfusions and he is already eating and playing. We just got settled in our room and the doctor said there is a possibility of coming home either Sunday or Monday depending on how he does. We cannot believe how well this day has gone and we know it is only because of all of the prayers and the promise of our Lord Jesus Christ!

Surgery Day

So this morning has been hard. We arrived at the hospital around 6 am. We met with the anesthesiologist after being interviewed and assessed by the nurse. The anesthesiologist was just as comforting and wonderful as the surgeon. She explained everything in detail and prepared us for after surgery. According to her, they are expecting the surgery to last 4-5 hours depending on what they find. She said that once he is in the OR it will take about an hour to prep him and put him under the anesthesia. Then around 3-4 hours for the actual surgery. She made us feel so at ease with the anesthesia aspect. Everyone was wonderful with Matthew and before too long he was getting goofy from the "happy juice." About 30 minutes ago we walked him to the doors of the OR. That was the most difficult time. The tears flowed regardless of how confident we felt or assured we were. So..now we wait. They should be giving us an update after 2 hours or so and we will update you all when we know anything. Thank you for all for all of the prayers and love sent our way. It gives us such comfort to know that all of you prayer warriors are hard at work right now! Keep praying...

One More Day

Well we arrived in Palo Alto yesterday and had the ultrasound done. The radiologist and an intern joined the tech in the room. They did not see the vascularization that they had expected to see. We weren't exactly sure how to interpret that but figured it didn't matter at this point-surgery remains the only option. We met with the nurse practitioner and Dr. Guzman this morning. We left the appointment feeling reassured that we are at the right place. They answered all of our questions and Dr. Guzman was quite confident that he will be able to remove all of the mass. Since the ultrasound didn't show what he had expected, he is leaning away from the idea that this is a vascular malformation. However, he would not speculate on other possibilities. As he said he won't know anything factual until he goes in surgically...so why speculate. They will remove a sample of tissue at the beginning of the surgery to send for pathology. They will have preliminary results within one hour and full results in 5 days. It is amazing to think that by tomorrow at this time we just might have some answers! The surgery itself should last 2 hours or so. There is a chance that Matthew won't need PICU, it will all depend on what they find when they get in there. He will stay in the hospital for about 4 days so we may even have official pathology results by the time we head home. So, now we pray and hug and kiss our little man as we wait for tomorrow to come. Please continue to lift us up in prayer, we will update everyone tomorrow.

Waiting Anxiously

As I sit here tonight I am filled with more anticipation and questions than ever. We will be leaving for Stanford on Wednesday. I received a call from the neurosurgeons office today to tie up any loose ends and answer questions. Even being a nurse, some of the things I was told caught me off guard. Among the normal lab work we will be doing they also have to type and cross Matthew's blood type to prepare for transfusions in the OR and recovery. DUH..most of you would say since we do know this is a vascular mass. But as a mom I felt like someone had punched me in the stomach. Then came the news that he would spend at least the first 24 hours in the PICU (Pediatric Intensive Care Unit). There came the second punch to my stomach. Again..medically this all makes perfect sense but my emotions overwhelmed me. And just when I thought I couldn't handle anymore a friend of my mom's came to the house to pray over Matthew. She read several scriptures to me and the kids, we all held hands and prayed. Even Sami laid her head on her brothers as we prayed. The Lord has led us to this place for a reason - I cannot imagine what that reason is but He has led us. I pray he is glorified!

Sami Turns 5

The first post was there to give a little history and update...now on to something a little more uplifting! Yesterday we celebrated Sami's 5th birthday with a swim party at our house. She was so anxious for it to start all day! We had all of our family and most of her closest friends there to help celebrate. We swam, played outside and ate! Sami's first little boyfriend came over for the party this year. Those two are as cute as they come...they act shy when adults are around then stayed glued to one another's side when we aren't looking! It was a great day to relax by the pool and enjoy good food with some good people. We can't believe that 5 years have already flown by. It seems like just yesterday she was born. I can remember always hearing adults say how fast time goes by and it seemed to go so slow as a kid. Now I know what they meant! We try to just enjoy each moment for what it is. This is a lesson we are learning more with each day..to slow down, relax and enjoy the blessings that surround us.

Let the blogging begin...

I wasn't quite sure of this blog until my sister-in-law recommended it today. Our son, Matthew, is having medical issues and we are wanting to keep all of our loved ones updated of his status. This does seem like the easiest way to accomplish that. Most people reading this will be aware of the situation, but some may not be so here is a brief update. About 4 months ago my dad noticed that Matthew's back was swollen on one side. We had been up to the snow just a couple of days prior so I assumed it was from a stumble there. When I got home with him from work I put him on the changing table to take a peek. When I turned him on his side out popped a lump the size of a small egg or so. I panicked...truly panicked because I knew this was not in any way normal. We saw the pediatrician the next day who thought it was a completely benign lipoma and set us up to Fresno for a consult with a pediatric surgeon. Several tests later (x-ray, ultrasound, MRI) and months later it was learned that there was a quite large mass in the muscle of his lower back. The options for diagnosis were narrowed down to hemangioma or sarcoma (tumor). We felt like the wind had been knocked from us. We felt uncomfortable with the surgeon in Fresno and our gut told us to go elsewhere. We ended up at Lucile Packard Children's Hospital at Stanford the end of April. They took the studies and had their radiologists and vascular malformation clinicians review it also. We were told the end of May that they were not convinced it was a vascular malformation although they were "still leaning towards that." It was recommended we see a neurosurgeon and have an additional ultrasound done there.

So...here we are the beginning of June. Over 4 months after my dad initially felt that lump on his back, we are finally getting answers. On Friday, June 13th, Matthew will have surgery to remove the entire mass and send it for pathology. We are feeling scared and anxious, but we do find some relief that the best of the best is on the case and an answer should be on the way. It has been a long road to get to this place. We have seen what will be 3 surgeons, 3 pediatric radiologists, 1 pediatrician and the advice of countless medical professionals. No one is quite sure what we are dealing with. So we are preparing for the worst but hoping for the best and praying relentlessly. The Lord is in control of this we know...his comfort is the only comfort we can find. SO prayers, prayers and more prayers!!!