Here is Sam's scar 8 days post-op. The nuerosurgeon curved it in the hairline to make it left visible after it heals. There are disovlable sutures that make the skin a little irrated and pink as they dissolve. It has been a roller coaster of a week. Over all since coming home I have felt just spent. I'll try to get some house work sor something done, and then just collapse. I am so grateful to family and friends for prayers first and for most. I know Sam's exceptional recovery is due to the vast amount of prayers for him. 9 days post op and he is at school. There are kids that after this surgery are not even out of the hospital at this point. I am also thankful for the support we have gotten. Meals and food dropped off, (with paper plates!), have been so helpful. The many texts, phone calls, emails and other forms of encouragement and support have been priceless to me.

It was a weird feeling driving away from Sam's school this morning. I know he is well cared for and loved while there. It's only a half day program too. Sam has been with me or my husband 24/7 since the surgery. I come home and checked facebook as three friend's children have had brain surgeries since Sam and I have praying for them and wanted to see how they are doing. The first thing I saw was Josh Wilsons new video "Fall Apart". God is so good and gives us what we need when we need it. So many times over the last year I have fallen apart, and I don't know when it will end.

1st full day home.....

We are on post surgery day 5. We all went to bed early last night and got some good sleep. Sam woke up just before 8. he said he had a headache. I gave him his steroid and took the girls to school. He played on the compputer. Sam has been a bit subdued today. Complained again of a head ache about 1 and said it was a 3, on a pictoral scale to 5 that was given to us at the hospital. Refused medication though and said it was better, but he is not his normal raring to go self. He is watching a pokemon movie and I'm going to go get the girls.

We are home!!!

I am so gald to be home!! So is Sam. Sam is on a course of steroids to help keep the headache and vomiting that he experiences yesterday from coming back. chemicl menigitis is another name for what he experienced. He is doing so well. I ams so tired I do not have much to say but thank you everyone for your prayers and support. Oh, if you have need to park in a parking ramp, stay away from bird nests. My car was a mess from sitting under one for 4 days.

Sand Art and Tantrums....

Sam has continued to be very wired today. I think some of it was stress, some boredom and some medication. Dexadron. We went to the afternoon activity of sand art pictures. He enjoyed it then we walked around the hospitals alot! I'm suprised his legs didn't hurt. he got a bath tonight and enjoyed that. We came back to our room and watched some tv skyped with a friend and settled down for the night. Sam said he was hungry, When I started to say that we'll eat in the morning, he lost it and escalated to a huge fit. I think it was stress of the week coming out. He is really missing his siblings. he finally quieted down and fell asleep. About 10 minutes later the nurse came in with meds. :( He had some at dinner and I thought that was going to be it for the day, or until midnight. We got him akoken and medicated. Then he got his snack. Pudding the nurse brought with the meds and a poptart we had.

I sure wish I could just let all the stress out with a big ol'trantrum. I miss my family. Aric is having a rough time away from home. My baby had brain surgery. I can't sleep in the hospital. I pray something doesn't happen to keep Sam here another day.

Wow, what a diffenence a few hours make!

Sam had some zofram a bit before lunch and the steroid with lunch and wow there is no stopping him now. He is up and running back and forth in his room! we took a long walk and finally with the help of the tv, Avengers, and an orange popsicles. He is sitting. i wonder if we can leave tonight?

Aseptic Meningitis

Well our plans to go home have been derailed. Sam woke up in pain. It was at first assumed this is because pain meds were at low doses and stretched overnight and he was so active yesterday. More meds were given for pain and muscle relaxing. An hour later he wanted to go to the playroom, but in a wagon. While there he sat up to play a game and after a minute or so laid back down and wanted to go back to the room. We were stopped by a nurse who took out his iv, then the nuerosurgery nurse practicioner came by. While we were talking he got into bed and threw up. So we are staying another night and starting a steroid for a couple of weeks. The cerebal spinal fluid does not like having blood mixed in, which happens during surgery. It causes swelling and the aseptic meningitis. Aesptic means it is a sterile meningitis, not bacteria caused.

Rambelings of a tired mommy.....

Sam has slept well. it is almost 7:30 as I write this and he is still sleeping. He was only woken up once for pain meds. he is moving around in his sleep like usual. He is definately feeling better! Last night was hard to keep up with him and more so keep him safe. More than once I or the nurse told him if he falls he won't be going home tomorrow.

I on the other hand did not sleep well. This pull out bed is so hard and uncomfortable and I think we got the only hot room in the hospital. Everytime I have been here it has been cold. so I brought long sleeve pajamas. Not needed in this room.

I am anxious to get home and be in my own house and bed. Mabey I can get someone to come over and watch Sam so I can sleeo. I am so thankful for the outpouring of love and generousity from friends and family. I have food waiting for us at home gift card to more fast food from church and the girls school. My parents drove through rush hour to take my kids to my sisters for the weekend. Then the prayers. I am reminded of james 5:16 "The effectual fervent prayer of a righteous man availeth much." It has. sam is going to be one of the rare kids who go home three days after brin surgery! We still need to pray as there is a window of about 5 to 14 days, even to 21 when aesptic menajitis can form. About 1 in 4 or 5 kids get this following chiari decompression.

I should get things together and get ready to go home!!!!

Post Surgical Day 2

Well new day has brought about a new kid! Sam has been doing great today. His last dose of IV meds was about 4 am. Today he has been on oxycodone, tylenol and valium. Meds we can manage at home. Sam got up and played in the playroom for a while this morning. We had a visit from Becky and Courtney. They gave him a gift of moon sand a plastic frog and a clear bucket to play in. Well Sam took it all made an habitat for the frog! Even decorated it with stickers! After lunch we took a walk with a wagon and he fell asleep and has been sleeping for about 1.5 hours now. Physical Therepy should be here in a few min. I wonder if he will be waking up? The nuerosurgon nurse practioner was telling me yesterday it is really rare for a kid to go home on day 3, that we should plan on day 4 or 5. Today she said he just may be one of those rare kids that can go home on day 3! that means we may get out of here tomorrow.

New Room, kind of....

This afternoon Sam was moved off of PICU to the nueroscience wing, used to be 4 south. That unit is being remodled so Gillette is leasing the old 7 west from Regions and that is where we are now, room #7327. This is an old hospital wing, the first thing you think of when you step off the elevator is instatution. Gillette has done a little remodling of the area so it is not as bad as that first hallway, but still old. If the PICU is any indication, the new wing will be nice when it opens next month.

Sam fell asleep right after we got to the new room and slept for almost 3 hours. Slept so soundly he didn't wake up when his sisters and brother came to visit. He was in a much better spirits when he woke up. Ate a good meal and even created a new recipe with ketchup and tarter sauce! then we had a visit from Izzy a therapy dog. Sam got to feed him a frech fry! just before bed we got to skype with some good friends and that cheered Sam off so much to share jokes and show off his owie from surgery. It felt so good to see him sitting up and talking. Skype is a fantastic thing!!! Now we are settling down for the night PT will be here in the morning to help Sam get out of bed. He will use a walker to start with.

Post-surgical day 1

Sam slept well until about 4:30 this morning when pain started to break through and vomiting started. Cleaned him up and settled him down with some drugs again and he slept until about 8. He is not interested in food this morning. About 9 we tried to start some Tylenol as he also had a mild fever and some apple juice with miralax. That didn't stay down. he asked for a Popsicle about an hour later and ate half of it. We just saw the neurosurgery nurse practitioner as the neurosurgeon is in surgery today. he will stop by later today. Over all she says Sam is doing great, just what they would expect. By their accounting he is on post surgical day 1 and will likely be here until Sunday (day 4) or Monday (day 5). We are to remain on clear liquids for a while. She wants to try and get him out of bed tonight or tomorrow. Given his existing gait problems from the femur fractures, PT is going to come by tomorrow and get a walker for him to use. Dizziness is common after chiari surgery. His incision looks good a little swollen but no sign of CSF (cerebral spinal fluid) leaking. If the vomiting and fever continues for another day or two a steroid will be used to help the swelling around the nervous system. It comes with other side effects and they want to make sure it is not just normal post anesthesia vomiting and ickyness before steroids are given.

Evening Update....

Ok I'm not sure what happened there. I tried texting a few updates and they cam through as gibberish. One was around 3 about how sam enjoyed a red popsicle and I can't believe how relieved I am feeling now that surgery is over and He is doing so well. I pray that he continues to do so. the second was how i liked the way nursing is keeping on top of the pain. Whenever his heart rate of blood pressure goes up they are giving him something for pain or valium. The nurse has been able to use the lowest doses of medications and the only time he was really uncomfortable, in extream pain, was right after surgery in PACU.

Sam has been restless this afternoon. His hair was cleaned with something prior to surgery and it was left all matted on the back and sides of his head. It really bothered him and he kept picking at it. He would also mess with his incision. We got some K'nex and I made a car to keep him busy and give his hands something to fiddle with other than his hair.

Along with the bordom and restlessness was hunger. We started with popsicles, then had pudding, then icream, for dinner there was broth, orange jello, apple juice and more ice cream. after all that he was still insisting on a hotdog. We finally gave him one about 6:30. After dinner the nurse gave him something for nausea. now at 8, it is so far so good. Nothing has come back up.

Sam's face is starting to swell some. The nurse tells me it is the body's response to trauma. over all though the nurse said he is on the way to becoming the best chiari patient she has ever had. Dr. Healy, Sam's orthopaedist even stopped by to say hi today. Sam thinks he is the boss of all the doctors.

I can't believe it but I am missing my other kids. It is quiet here. My relief is giving way to exhaustion.

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we are in PICU....

Doctor feels that surgery went well and he was able to do everything he set out to do. It was a little shorter than the 3 hours. he took out a silver dollar size piece of skull and some of the first vertabrae. Opened the dura and put in a patch made from bovine tendon. it was almost an hour before they came to take us to see him in PACU. Sam had a massive headache when he came around. they gave him some morphine, valium and toradol. Then got dad and I. Sam woke a bit after we got to him and was still in pain so they gave him a bit more morphine. He fell back to sleep for a bit. when he woke up the next time he asked why his head doesn't hurt! this all happened in the PACU (post anesthia care unit). We are now settled in the PICU for the first night. he complained about the cathedar so that has been removed. he has also asked for toys. That is why he wanted to come to the hospital in the first place! He is also enjoying the cable tv. We don't have cable at home so this is a treat. he has a PICU doctor assigned to his care and the doctor is very pleased to see how much he is moving around. Said he is looking very good right now.

Surgery is going on....

I got up about 4:30, suprisingly I wasn't awake watching the time. The alarm actually woke me up. We got to the hospital ok and through all thier stuff.Sam seemed ok with everything. He wanted to watch a movie and picked out Monsters, Inc but that proved to be to much scary stuff. So we switched to a marvel super hero one and drifted off to sleep with me holding the portable DVD player up so he can see it iver the mask. He didn't like the smell of the gas and got a little upset at that. It was about 8:25 when I came out of the OR. We are now settled into the PICU and waiting word. Richard got the other kids off to school and I assume that went ok. He should be up here shortly.

Just a few hours now.....

Well we leave at 5:45am for sam's surgery. He has cleared the pre op physical with our PCP and then the nuerologist checked him again today. he's good to go. I need to go put the clean sheets on the bed and pack a few more things. I think I have gotten to a place of no feeling, mabey it is better described as a calmness. it helped that it was a beautiful sun shiney day out today and I was busy getting everything in place. Sam is so excited it is here. He has been talking to people at school telling everything that is going to be done. He will have one more big headache then it will get better. Please pray that all goes well with the surgery, and he his healing goes smoothly. About 1 in 4 get aseptic menigitis following this surery. Pray that all goes well on the home front.

3 Days...

Well it's almost midnight so I could say 2. This morning at church was so good. I was so disappointed to not be able to go to the woman's retreat this year. By the time I left church I felt so loved and supported by my church family. Even a lady I don't really know stopped to say she was praying for us. It was good that I was there. Plus I found Sam's iXL in the van that gave us a ride home Easter Sunday, or I should say Rose did! Sam is doing pretty good with it all. We went to a couple of parks today and Sam had to take a break and lay downfor a bit because of a headache.

So they start....

I was wondering the other day why I didn't have any dreams about the surgery yet. Well they started this morning. It included such things as being at the wrong place, walking to the hospital and being late, two kids scheduled for surgery at the same time and I was focussing on the other child who had eaten something but was saying no and forgot to make sure Sam didn't eat. 4 days.

Finally......

Joshua 1:9 (King James Version)
9Have not I commanded thee? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with thee whithersoever thou goest.

Proverbs 3:5-6 (King James Version)
5Trust in the LORD with all thine heart; and lean not unto thine own understanding.
6In all thy ways acknowledge him, and he shall direct thy paths.

Psalm 30:11-12 (King James Version)
11Thou hast turned for me my mourning into dancing: thou hast put off my sackcloth, and girded me with gladness;
12To the end that my glory may sing praise to thee, and not be silent. O LORD my God, I will give thanks unto thee for ever.

Philippians 4:6-7 (King James Version)
6Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.
7And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.

Blogger is down so I’m putting this into Word and will cut and paste later. This morning I went to facebook and the first three verses show up in my feed. Three different people put these verses in their status and they all came together for me. I’m not sure how I see dancing about Sam’s surgery, but be not afraid I will not be alone. God will take away my mourning. Last night at church I went forward for prayer for the surgery and my coping of it. I’m not alone. Wednesday was a quiet day while the older ones were at school and I started to freak some being mostly alone with my thoughts. I’m not alone came through again and again with the men I prayed with. One of them shared Phil 4:6-7. That verse jumped out at me a few months ago while I was waiting for results of biopsies. God understands, I don’t need to. Even if doctors don’t figure out exactly what is going on with Sam, God understands.

There are times I am so afraid that this is starting Sam down a road of repeated brain surgeries. Then I tell myself he has done remarkably well with surgeries in the past year. He has had pleanty of practice with 5 in the last year, and two sedated MRIs. This unkown is so hard. But isn’t that all of life?

Sam is doing well. He was a little more tired today and had a headache again this afternoon. He was strapped into his carseat when he told us and I was grateful we made it to our destination without it escalating to severly. He also had his last therepy before surgery. We are to play it by ear, mabey check in after surgery, definitely after we see Dr Healy next month. I pray he stays healthy until Wednesday so we do not have to delay the surgery. He is loving his calendar and so careful to keep it up. He crosses of a day each night and each morning he tears off a chain.

Ok this was written 5/12 and finally I could get in and post 5/13.

7 days....

Sam remains excited about surgery and continually asks when we can go to the hospital. As soon as I can find the stapler, I'm going to make him a chain to help count down the days. I however am a bundle of nerves. Little things like running out of dish soap two days before payday, and a chance to get more, are bringing me to tears. Pre-Op called last night to go over things before surgery.

9 days....

First thing Sam asked when he came downstairs was how many days until his surgery! This was in an upbeat positive voice, not a dreading one. He then told my friend that the doctor was going to fix his brain so he didn't have headaches anymore, but he can't eat while there.

I had Sam's IEP/transition meeting this morning with the staff from the preschool he is at now and the elementary school he will be at next year. I feel we have a good plan in place and flexibility worked in to meet the needs that could come up. As his preschool teacher said, sam's status can change overnight. By fall I need to get a good idea of his lesions and risk of fracture.

Perect Peace.....

³Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. (Isaiah 26:3, King James Version)

Today I told the kids about the coming surgery. 10 days away. They have haeard to many bits and pieces of things so I just said it all. I feel relieved to have it out in the open with them. I think Sam is ready to go tomorrow! He doesn't seem to remember the pain and discomfort of previous stays. He was talking about the food that comes whenever you need it and the toys though! He got a little subdued when I said he would have an iv when he wakes up afer surgery. He just doesn't have a clue how tough this will be. A seemed a little indifferent and was not interested in talking much. He was the first to leave the room. Z &E were more excited about getting to go to thier cousins that weekend. Though Z had more questions later.

I have a dear friend who has had her daughter go through brain surgery at 8 weeks for craniosynostosis. She prayed with me this morning about the upcoming surgery and one thing she mentioned is peace. Yesterday someone posted a video of Laura Story's song Perfect Peace on facebook. I think this needs to be my verse for this ordeal.

Planning...

Sam has had 5 surgeries and 2 MRI's under sedation at Gillette in the last year. the MRI's have been planned ahead of time but the surgeries have all been emergent in nature. this is the first surgery we have planned for. I got a big envelope stamped PREOP in the mail today. It is a folder/booklet titled "Planning for Your Surgery". It has things broken by down month before, two weeks before, day before and day of your surery. Even information about after surgery and staying at the hospital. They don't say if one can get wireless access to the internet. I know there are computers available for use throughout the hospital but now that we have a laptop I want to bring that.

Surgery Date

I finally have a date for surgery, May 18. We need to be there bright and early at 6:30 am. surgery is to start at 8 am and should last about 3 hours. Then Sam will be in house they call it, we say in the hospital, about 4 days. the first night will be in PICU.

I am really struggling with the stress of it all. Thinking about what he will go through, about what I want to/need to do before then (clean the house really well, make some button up pjs for him in fun fabrics), make arrangements for the other kids and on the list goes. I find my eating habits are deteriorating. The other times he has been in the hospital, my ulcerative colitis has flared up. I don't need that now.

I am thankful for support I am getting too. I have a friend, our girls are in the same 4th grade class, who works at Gillette and it is so comforting to be able to talk with someone who has seen this from the other side. At the same time she is a mom with a special needs kid and has the mom heart too. Sam's preschool, ECLC in 196, has been fantastic. I am so thankful that I have someplace to send him where he is loved, cared for, and stimulated each day. His teacher said today they will come visit him in the hospital. That will be so good for him and me! The ladies from my Tuesday night prayer group are great too.

Sam's headaches continue to increase too. They are coming two and three times a day. I really think it is beginning to wear him out. He is just not quite his usual smiley busy self. he is laying down a lot more and just a bit quieter. Last week at therapy the PT thought his limp was worse. I think it is too because of the strain of the headaches on his body. Not to mention chiari can cause leg pain too. I am also worried about his back. He is complaining of low back pain and the MRI noted FD on several vertebra from C3 on down.

This has been a tough weekend as far as headaches go. We had the big one on Friday then three on Saturday and one on Sunday. I am letting him lay as he needs so the headache does not escalate like Friday's did when he was pinned upright in his carseat. I am anxious to hear from the hospital about when surgery is.