Scars

“Zipper Neck” – that is the name people affectionately call themselves in the Chiari world that have been through similar brain surgeries as MJ. I am not too particularly fond of it nor do I plan to ever introduce MJ to that term/description. I don’t ever want to make light of what MJ has been through. Now I suppose at some point in his life someone along the way may use the term, or someone possibly insensitive could use it with the intention of being hurtful. That is okay, because we plan to help MJ understand the story God has given him through this circumstance.

You see, scars show there is a story to tell. And what Dan and I pray to do as MJ grows up is never let him forget that. God knew when MJ was created just what challenges he would face in life, and what he would need to overcome them. This brain surgery is part of who he is now and it is the story God has given him. Scars are a symbol of pain and brokenness, but God can give us peace and purpose through the pain of our past.

The last two months have been a roller coaster for our family. As a dear friend described “the rug has been pulled out from under them”. MJ has had plenty of medical issues to deal with but never in my biggest fears did we ever think he would face brain surgery. God has provided for our family in amazing ways and gotten us through a hurdle in a very scary and difficult time. MJ is still here and doing amazingly well considering all he has gone through in the last month. And although we don’t know the conclusion of this chapter in his (our) life yet – we know God’s hands are all over this.

What our job is now as parents is to help MJ grow up to know that no matter what continued challenges he faces in life - that it was, is, and always will be in HIS hands. We should always give everything over to the Lord, and pray with open hearts to release the power of our own personal stories to glorify Him. That is one of the reasons I write this blog…to share my stories. I pray with each post that somehow God is using it in someone’s life. If we don’t use our stories we are given to share with others, to love others, and to help others understand God’s amazing love then what are our stories and our scars for?

Yes, our scars are a story of pain and brokenness. But God’s scars are a story of forgiveness and healing and the story of God’s unending love. Just as the disciples recognized the resurrected Jesus when they saw His scars, others will recognize the Healer Jesus when we show them ours.

MJ's medical fund

Our family is extremely humbled and grateful for the outpouring of prayers and support you have given us these past few weeks since learning of MJ’s brain malformation. Many of you have reached out to us providing prayer support, meals, cards and other needs and we are incredibly appreciative and we pray for and give thanks for each one of you.

We are blessed to have medical insurance that helps out; however there are many expenses that come with MJ’s medical needs with his multiple diagnoses:

·         Medical procedures not fully covered by insurance.

·         Transportation to and from appointments at Phoenix Children’s Hospital 40 minutes away.

·         Transportation for therapies multiple times per week including Physical Therapy, Occupational Therapy, and Feeding Therapy.

·         Lost income from MJ’s mother taking necessary unpaid time off of work to participate in his care.

·         Materials to provide MJ accommodations for daily living (ie: MJ’s mother is having to alter shirts so they do not go over his head and trigger pain/headaches).

Since MJ’s brain surgery we have been asked how you can assist our family financially. We have set up an account at the request of others so they can provide financial assistance to help us support MJ’s care. We appreciate your prayers and support whether you are able to donate or support in other ways. We pray for all of you and thank God for you being in our life and pray you are blessed.

Please find the link below to donate to MJ’s medical fund.

 

Medical Fundraising Made Simple

Home Sweet Home



JR and MJ reunion.

 We are grateful to be home for so many reasons including our own beds and shower. We camped out at my mom and dad’s house since their house is only about 12 min from the hospital and our house is about 45 min away. This is where we had JR (MJ’s almost 3 y.o. brother) most of the time as well. Dan and I took turns each night: one of us with MJ at the hospital, and one of us with JR at my parents’ house.

Unfortunately due to flu season the hospital was on strict respiratory restrictions so no visitors under 12 were allowed (including siblings). That was hard on the boys. I just have to share with you the picture I got when the boys saw each other for the first time when we got home Monday night. We had asked JR to be gentle, so he wasn’t sure if he should get too close to MJ – but look at the happiness in MJ’s face. They may get on each other’s nerves but their love is strong.

We are incredibly grateful to have MJ home with us to continue his recovery. He was sent home with a walker due to his instability. After not walking for almost 5 days and going through major surgery he needs to build his strength back up. The portion of the brain (cerebellum) they did surgery on controls balance and coordination. When his brain swells through the healing process his balance is unstable and he gets unsteady / dizzy. The walker is there to give him something to grab onto so he doesn’t fall when he gets the dizzy episodes.

His pain is so unpredictable at this point. He goes to bed every evening with pain, and wakes up every morning in pain. It seems to be about a 50/50 chance that the pain he wakes up with will last throughout the day and incapacitate him. He had such good days on Monday and Tuesday, then Wednesday morning his pain was severe and he threw up – so we called in to the doctor. I was worried that he would go backwards after having 2 good days – but according to his neurosurgeon the next month will be (in their words) a “roller coaster”. Because of the brain swelling and healing there will be good days, and bad days and it is unpredictable.

We are however getting better at figuring out some of the things that trigger his pain. His pain always comes if he gets up too fast (we knew that one), bends over (we knew that one too), hyper-flexes his neck (tilts his head in any direction too much), stays up too long/too active without laying down to rest, and jumps (of course..lol…he discovered that one on his own and informed us – typical boy).


MJ with his finished Cootie game.

For this week we are taking it easy of course. Going through something like this gives you an entirely different perspective on things and it is easy to take more joy than ever before in simple family time. To get MJ out and give him some fresh air we played a couple of games at the table in the backyard when he was feeling good, we watch movies, and most of all encourage him to rest. He gets a bit stronger every day. We are looking forward to starting his physical therapy on Monday 3/11. He may need a little bit of help with balance, but most of all he needs work on the range of motion in his neck.

Grateful for all of you checking in with us and your continued prayers and support!!!

Day 4 (Monday 3/4/13) – The Power of Prayer

Yesterday (Sunday) was the worst day for MJ and all of us emotionally since surgery. MJ had the most pain, was refusing to eat, and even in the afternoon began to refuse all meds. He was just done with this whole mess. Sunday morning I was beginning to get scared. Somehow we had to overcome these obstacles and get MJ better before he took a turn in the wrong direction and got worse. I texted a friend to give her an update and she rallied for prayer.

Our church family prayed specifically for MJ in each service Sunday morning. I cannot tell you how comforting it was to know Dan and I were joined in prayer with so many at those specific moments. I literally felt the warmth of those prayers. Sunday afternoon when we got MJ in the wheelchair then he asked for dinner - I immediately knew God was right there answering all of those prayers. On Sunday afternoon I stopped in my tracks after MJ was out of bed with tears in my eyes... “Thank you Lord. Thank You.”

We were so grateful for the prayers knowing we had a night ahead where MJ was going to be on no meds since he was refusing. I was scared for him. But somehow the R.N. was able to get one more dose of meds into his (bad) hand IV for the evening to get him through the night. Thank you Lord.
 

The end of the day Sunday helped us feel we were finally turning in the right direction. Monday morning was a new day and MJ was acting more and more himself. We were ready to take on the day and be more pro-active with his care plan. Dan devised a plan with the nurses to get MJ’s foot IV out without him kicking and protesting and the plan went flawlessly. MJ was upbeat, in no pain, and ready to take on the day.

We knew PT (physical therapy) was going to be the turning point, the deciding factor on whether or not MJ was going to stay another night in the hospital. Knowing his personality and the fact we may go backwards if we push him too far - my only goal for him today was to see him stand up. All weekend we have been trying to entice and encourage MJ to get up by talking about the awesome view we had out his hospital window. All week long we have been encouraging MJ telling him he is stronger than he thinks he is. I knew if he could just see how strong he is that would be more than half the battle.



MJ kicking the ball with PT.

PT got there and we started small by kicking the ball from the side of the bed. It was difficult and painful for him – but he was encouraged and kept trying. After a bit of negotiating MJ was still reluctant to try and stand. He was scared. So at my request PT left the room to find a walker that she had suggested on Friday. While she was out of the room, we continued to encourage (without being pushy) and while I was internally praying - MJ mustered up all of his courage and said he was ready to try to stand. His dad helped him to his feet for the first time since his brain surgery. It was an amazing moment. When I looked at the picture it both broke my heart and made me so proud. You can see both the fear in his eyes and the determination to overcome it. 

MJ standing for the first time
with the help of his dad.

After standing for a few moments you could see his fear change to a comfort that ran through him like God was whispering to him - I can do all things in Christ who strengthens me (Phil 4:13). Yes sweetie – you certainly can. All of a sudden he said “I want to go to the window”. He wanted to see the view, and that he did. PT came back with the walker and was so excited to see MJ across the room from where he was when she left. Once he got that walker the rest is history. He was unstoppable. We set short goals and he kept lengthening them – “I want to keep going”. He took a long lap around the nurses’ station on our side of the floor and took a detour to the playroom. 



MJ seeing the view for the fist time.

The rest of the day kept getting better and better. After the playroom MJ walked back to his room with the walker but he didn’t want to lie down. He was energized and excited he found that strength we were telling him about. He wanted to sit by the window. He wanted to enjoy the view we had talked about for days, and he basked in the sun and colored in coloring books. After lunch and some rest he wanted to go back to the playroom in the afternoon, and again we came back when he was done playing and he sat and looked out the window.

He reached his goals – he surpassed his goals. Within 24 hours he was a completely different kid and without a doubt I knew it was because of all of your prayers. My baby was back – and we were going home!



MJ walking for the first time.



MJ enjoying the view waiting to go home.



Day 3 Post Surgery (Sunday 3/3/13)

It was a rough night with lots of pain. MJ’s neck is really bothering him – it is extremely stiff and sore. It seems like we are maxed out on pain meds and it still bothers him. Neither MJ nor I were able to get quality sleep last night. I am getting really worried about his pain and mobility. He is so afraid of pain he doesn’t want to push his own limits and get out of bed or even hardly move on the bed. And I know the more he lies there the worse it is going to get. It is like a vicious cycle and somehow we are going to have to figure out how to break it.



MJ sitting up coloring!

 I have been trying to encourage MJ for the last day or so to sit up in bed more and color on his table or even read a book. I am trying to find ways to get him to sit up more and get his head off of the pillow. Up until now he has been totally resistant to much movement. The surgeon told us out of all brain surgeries they do this is one of the most painful because of the route they have to go messes with all of the muscles in the neck. I can imagine the pain and wanting to guard his neck poor thing. Later in the morning on Sunday morning however he did get into a fairly good mood (and by good I mean not complaining of pain and wanting to do something other than lay in bed and watch TV) and we got him to color!

Day 3 challenges we faced:

The meltdown - Part of MJ’s sensory issues causes him to have a HUGE fear of adhesive. The kid can’t even stand to wear a band aid because of the pain it causes him when it is removed. The few times he has had a band aid in the past I have had to soak it off with water and I had to really talk him through it. MJ had one IV in his hand and one in his foot. Of course the tape they use to keep the IV’s in place is like torture to my little guy. We have been keeping a sock on his hand because he can’t even stand to look at it without anxiety.

MJ had a major meltdown today after we discovered the IV was not working in his hand and needed replaced. MJ’s dad Dan, myself, and his nurse Holly spent about 15 minutes trying to talk him through our options. The one in his foot was still functional but ever since we left ICU he won’t let anyone touch it (he wouldn’t even let them take it out after ICU so they just capped it). We could go the easy route and she could use the foot IV since it was already in, or he could get a new one (with a poke) in the other hand, or he could start taking oral meds. He was so overwhelmed in fear he decided to go completely without any meds – refusing everything. When he gets to meltdown mode there is no reasoning with him and it only makes things worse to continue. I asked the nurse to come back later and that we needed to give him time to calm down.

After we calmed him down for a while I talked to MJ about oral meds. There was no way I wanted him to go without anything – I was so afraid of his pain once everything wore off. I tried to reason with him but he was still not having it. At some point you just have to make a decision for him. So I had the nurse get some orange juice, told him we are going to take a sip of juice, squirt the medicine in his cheek, then take another sip of OJ again. I got about ¼ of the med squirt in his mouth and he ended up throwing up because of his gag reflex. Ugghhh….Yup – when Autism and hospital stays collide. We were there. We were out of options. It was now a wait and see and just pray that when his pain med, nausea med, and anti-anxiety med was fully out of his system that it wouldn’t be complete misery for him and everyone else. I was so sick to my stomach but we were out of options and just had to see what would happen that night.

Day 3 accomplishments:



MJ knocking the toy
off his head with PT.

 MJ was more open to participating in PT (physical therapy) since we got more creative and making it more of a game. He did a great job moving his neck a bit more to try and knock a toy off (this was previous to the meltdown of course).

In the afternoon to get everyone’s mind off of meldowns and meds I told MJ if he got into a wheelchair out of bed we could take him to the playroom. To our surprise he was willing to do it. With very specific requests about the way he wanted his wheelchair with pillows and blankets I got MJ into the wheelchair and he stayed up for about an hour playing video games. Yay for getting out of bed!!

First time out of bed since surgery!

MJ is showing better interest in drinking and he actually said he wanted to eat! We ordered him an early dinner (his choice of food) and he ate about 5-6 bites. Good progress!

Day 3 goals:

Get him to take oral meds to manage his pain

Get him to stand/walk.


I think this was the toughest day emotionally since surgery. MJ was showing the signs of PTSD (post traumatic stress disorder) that the surgeon predicted and although he has handled things fairly awesome to this point he has reached his boiling point.

We just pray that God can get him through with little to no pain so we can get him to walk and get him out of here. Thanks for all of the extra prayers today. I wish MJ understood just how many people he has out there rooting for him. I can’t wait until he gets old enough to truly understand.

Day 2 Post Surgery (Saturday 3/2)

We had a fairly decent night last night. MJ was not happy with the fact that he was in a new room when they moved him out of ICU at about 7:00pm. He kept saying he wanted the “old” bed even though we took the bed with us. He is so attached to routine the poor sweet boy hates changes of any kind.



MJ and Howie

 MJ had a nice treat today with another visit from Pet Therapy. Today he saw Howard, aka “Howie” – a sweet yellow lab. It was so great to see MJ brighten up and for a few minutes forget about his pain. Unfortunately from that point of the morning on too much started happening one right after the other with the nurse coming in, and the PCT coming in, then the PT person. It was too much for him and too overwhelming all of the poking and prodding and he just couldn’t take it anymore. I had to ask the PT person to stop because I could see MJ was on the verge of a meltdown. They were not accomplishing anything anyway except making him mad – and MJ didn’t want to cooperate.

Fishies, Sprite, and one of our first smiles!

We can see each day where MJ is becoming more and more alert. He is also showing more of his typical (and sometimes ornery) personality. It is so refreshing to see glimpses of your child you know beneath all of the craziness and pain meds. A few ups and downs today – and slower progress than what the on call (weekend) doctor is looking for – but we are encouraged there is still progress even if it is slower then what they want.

Day 2 accomplishments:

MJ is starting to get a tad more range of motion in his neck. We are having him change positions in bed every 2 hours or so with assistance.

For the first time in 2 days MJ showed interest in drinking – we thought to offer his cup from home and he accepted it and has been sipping water since! (duh mom and dad – the cup!)

Late afternoon he had some goldfish crackers and Sprite and held them down! – that is all he wanted to eat for the rest of the day but we’ll take it!

Day 2 challenges we faced:

Way too much happened one after the other and he got over-stimulated and frustrated. I need to be more aggressive and proactive in communicating his needs so we all don’t get overwhelmed with days like today.

MJ refused to cooperate with PT today so he did not accomplish anything. By the time PT got in he was overwhelmed and not having it.

The doctor wanted MJ out of bed today but even with encouragement and choices he was not having it. – I have got to get him out of this bed tomorrow somehow!

Day 3 (Sunday) goals:

Continue moving and stretching his neck to gain more range of motion.

Expanding his eating and drinking.

Sitting in a chair.

Moving around to avoid lung atrophy.


Slow progress again but still good progress. Papa even got some smiles in the afternoon when he came to visit. I wish you could see how strong you are through our eyes my sweet boy. You can do this!

Praise God for another progressive day despite the challenges and emotional obstacles!

Day 1 post surgery (Friday 3/1)

You know that feeling when you get really sick and feel like you got run over by a truck? Yeah well it goes without saying I think our little guy felt like he was pummeled by a freight train.

The first night post-op was a tough one (Thur night). From the time our visitors (grandparents) left in early evening long into the night the nurse was in and out constantly. The challenge of being a neuro patient – they have to check you at least once an hour to make sure all is well neurologically by checking your pupils and having you move your fingers and toes. He also had a hard time getting comfortable, and throwing up some more. The result – not much rest at all.

MJ has had a ton of struggles with neck movement and lots of pain today – typical for this surgery and one of the things that make the recovery so difficult. I was very grateful that they are keeping him on scheduled pain meds and not waiting for him to ask for them.

Day 1 challenges we faced:

•  Move his neck around more (big challenge) – the PT described it as the worst morning stiff neck you have ever had x10,000.
• Eating and drinking - He tried 2 goldfish crackers and they didn’t stay down and he is refusing anything by mouth at this point.



MJ sitting up with PT a
nd mommy by his side.



 Day 1 accomplishments:

•  With lots of encouragement from mommy and PT he was able to sit on the edge of the bed for 1-2 minutes!! I never thought I could be so excited for my child to sit up again!
• He was moved out of the ICU to a regular room!

Moving out of ICU Fri night.
We are going to miss our nurse Cathleen!

Day 2 goals:

• Continue moving and stretching his neck to gain more range of motion.  
• Eating and drinking.  
• Sitting in a chair.  
• Moving around to avoid lung atrophy.

Slow progress but good progress. Mommy and daddy are exhausted. We can only imagine what he is going through. Every ounce of energy we spend on him is absolutely worth it. Plug along little guy – it’s only gonna get better from here.

Praise God for progress!