Tuesday, March 31, 2015

The Throbbing Scar....

We continue to make slow and steady progress. Today Javad moved his arms, moved his head, and rocked his leg back and forth. These are small indicators that he is inside his body that is sleeping. It must be so frustrating to even have less control over your body that you are used to. So unfair for this boy who already has to do so much.

Tomorrow he will have an EEG and then we meet with the doctors. I have already said that we want to bring him home, and his small gestures reminds me why we are fighting for him.

Tonight my stress has hit the wall...i have a horrible headache and will write more tomorrow. For tonight we will sleep and tomorrow more will come...we continue on this journey, but tonight I am catering to my throbbing scar.

Monday, March 30, 2015

Slow progress...

He moved his head...It was small but it was movement. Earlier today I thought I saw him move his hand, but shook it off thinking it was my imagination...Simon and David saw him move his foot. These are small baby steps...so small that some might not even see them, but I am aware...so acutely watching his every move.

Over the weekend I have experienced the gamut of feelings...I have felt the depth of despair, I have lost hope, I have felt anger, I have felt hope...I have cried and then gathered myself. It has been exhausting.

I can't remember a time when I have been so deeply exhausted. This is the kind of tired that is so deep that you ache all over. My legs hurt from the stress and anxiety and, frankly, no amount of anxiety medicine is controlling my inner turmoil. This path is foreign...I don't like it...but we're here and I am determined that we will get to the end of this path relatively unscathed.

There have been so many hospitalizations, so many times when I knew the ropes, navigating these waters as been both stressful and worrisome.  In the course of two weeks we have met all four of the neurologists, crossed one off the list. I have advocated for our boy told them that we intend to take him home. There is no book of instructions, no place to go for help. I have send out please for information, sought the help of other parents who have walked this path.

I know that this path we are on is a long one...one where there will be deep valleys and high mountains. This curvy, twisty path will not be easy, but I do know one thing...he moved his head and that's all I need to know for today.


Sunday, March 29, 2015

Walking the tightrope...

Some days I am wondering why I continue to write. Ironically, although there is not much that is happening, it seems that there is so much to say. Today there was no real response from Javad. He is sleeping. I told him that tomorrow I am going to hassle him. Although I know he needs time to heal, I am pressing down the panic inside, the part of me that is a naysayer. I believe that we are going to get our boy back, but I can also see in the eyes of the medical community that they are concerned.

The internet is a bad thing when you are worried...you can find support for almost any opinion you want. Yesterday's smiles were a glimmer of our boy, but I also wonder if the doctors will see those smiles as insignificant, as something his body was just doing. I felt Javad's eyes on me and watched him work to smile...I felt it was a breakthrough.

Then came today....when he slept. I look at my sweet boy and he looks like he is sleeping. It's so peaceful hearing him breathe in and out, seeing his sweet face. I would think it was a regular night if we weren't hanging out at the hospital. I believe that this boy is a fighter, that his time has not come, but I am tired.

In the past, when Javad was sick, we knew the routine, knew the drill. I could predict how long he would be out of commission, how long he would need to rest before he would wake up and be sassy. This time it is different...we don't know the drill, This is uncharted territory and, I'm not going to lie, I don't really like this location. Everything is foreign, the doctors seem cynical, and I am tired. My "restful" spring break was not very restful. It is a situation, again, where the world goes on and we are stuck in this strange foreign place.

I am walking the tightrope. Emotionally I am hanging on by a thread, physically I am sore from sleeping on the "bouch" (not a bed, not a couch), and mentally I am tired. I feel like I am not really doing a great job anywhere. My students have missed a lot due to my absence, I am behind in their grades, and I feel that I am personally scraping the bottom of the barrel. I know that this is not a sprint, but a marathon, but this marathon is wearing me out. I am in an area I don't understand and feel like everyone is speaking a different language.

I am hoping that this week will bring us signs of our boy, bring us hope. I need some. I am not good on the tightrope...it's just too far to fall.

Saturday, March 28, 2015

A smile that speaks the language of hope...

After yesterday's Doctor meeting disaster, I woke up this morning more determined than ever to get things straight. I was determined to let the doctors know what a train wreck their meeting was. In addition to that message, we were determined that Javad was going to heal. Their presentation could definitely use some refining. They should never (and I emphasized this...), never take away hope from families. One of the docs was totally shocked that this was our interpretation of the conversation, while the other seemed genuinely interested and concerned that the meeting had not gone off as planned.

This was my giraffe mother spirit coming out and giving the flying giraffe kick to medical professionals and letting them know who really knows the littlest boy best. There have been so may years of being told what people believe about Javad, how they see things moving forward, what their opinion is. What people don't know, especially medical professionals who have no experience with Javad, is that he doesn't really follow the rules, he is on his own path, he does things his way, which often does not follow the path that medical professionals feel is the norm.

Today gave us hope...today we got a smile.  We actually got three smiles. They were clearly a lot of work for him. They started small, each of them a half smile that grew into a whole one. I had been kissing his hand when he gave the first smile. When I asked him if he smiled at me, he smiled again. Each smile took work and effort, but for the first time, we saw a glimmer of our boy. It made me more determined than ever to get him back, to continue the fight, to work hard to bring him home.

This boy is our heart, he is a special one, he is our bridge child, the one that connects our oldest three to each other. He is Grampa's "Big Boy," he is the one with a special bond with Grama. He is the one who keeps us all on our toes, the one that has taught us more about medicine than we ever wanted to know. He has allowed us to meet other families with MTM children, he has paved the path for many. His journey is not finished, he has much to do. Today, we got a smile...it is only the beginning...we are now speaking the language of hope! <3

Friday, March 27, 2015

WWJD: What would Javad do?

Today started out pretty well...Javad seemed to have a good night and, overall, things seemed to be going pretty well. David and Simon came to hang out with Javad so I could go on a field trip with some of my students. They played Laser Tag and had a blast. Nothing like watching a student translate directions into Somali, see newcomers come out of the game area with joy splashed all over their face, it was a great time.

Returning to the hospital was something else. Javad had an EEG while I was gone and the doctors wanted to talk with us upon my return. When the doctors want to talk (and then want to go to another room to have said talk), things don't look good. I have to say that it was one of the poorest executed conversations ever. As we know, Javad is still sleeping.We all want him to wake up, but I also want his body to heal. Needless to say, back to the doctors and our meeting. We sat down and the neurologist (who I had never met) begins to tell us that Javad is still showing signs of having seizures and that we need to decide what it is we want. It immediately sounds as if we have jumped from square one to one hundred, which didn't really go well with me.

"What we want is to take our boy home. This is the way he is, he pulls into himself. We want to take him home and let him recover. If after a long time we are still in this same place, then we can have this conversation." The next step was to talk about giving a new medication to control the seizures, repeat the EEG and go forward from there. The doctor stated that he is not responding like they want (which I am unclear about...more to come).  I left the meeting frustrated, cried, ranted, then got angry. I took a nap and am now writing to you. Overall, I am actually in a better place. Before my nap, Javad got upset and began crying (Hmmmm...no response? Ya...whatever).

This is what I believe....Javad will improve. His body has been through the ringer in the last days. He has suffered a seizure, had cardiac arrest, had CPR performed on him, came to the hospital, was chilled for two days, then thawed. Next he was given an adult dose of phenobarbital for two days, then spent three days recovering. This is why I am so frustrated. I feel that they aren't giving him time, they are looking at his outside  and judging him against whatever they feel should be the ideal.

So after my nap I woke up to a post on Facebook from my daughter, Stesha.

"As we continue to deal with Javad's slow recovery I have to take a moment to think WWJD - what would Javad do? And you know what he'd do? He'd throw a fit when he was overwhelmed, he'd watch Netflix to clear his mind, sleep until he felt better and get hugs and kisses to heal his soul. So that is what I need to do. I need to be with my emotions and fears about this process, not fear folding into myself when I need and remember to let those around me love me as I need it. ‪#‎giraffestrong‬ ‪#‎whatwouldjavaddo‬"

So that's where I am...WWJD? This may be my new mantra. Javad is a fighter, Javad is sassy, Javad needs time. The reality is that the doctor we met has no idea about us, about Javad, about our journey. The case manager did tell the Dr after we left that we have been told many times that Javad is in bad shape, that Javad has defined the odds over and over, that Javad has proven many doctors that work here, wrong. She also explained that we fight for him and are unwilling to give up. Their response? "That's nice to know."

So here we are, the fighter in me activated. I believe that Javad will improve. There is brain activity showing a difference between waking and sleep and that he is responsive to the room around him. There is also, apparently, still some seizure activity. I am hoping that this new medication stops the seizure and that their discontinuation of the phenobarb will help make him less tired. (That's the other thing that baffles me...we are giving him sedatives and yet are surprised when he is sleeping...go figure!

So, we are here. What would Javad do? He would start growling, he would point to what he wants you to see, he would smile and ask for kisses. Javad would be persistent, making sure that we aren't quitting...so now is the time for us to follow in suit, we will continue the fight. We are not giving up Tomorrow is a new day, a day that I talk with the doctors again and tell them that we are not about to give up, tell them that we are up for the fight. Our boy is in there...we are just going to wait for him to come back...Javad has the patience of Job...we can wait to.

Thursday, March 26, 2015

New Attitude...

Today I had an epiphany...while Javad was sleeping (and I was worrying about why he wasn't waking up, wasn't responding, wasn't making eye contact and the like) I realized that this is what he does when he's sick...he sleeps. When he was younger and in the hospital, he would shut down and draw into himself...it's the way he heals.

So I decided to get a new attitude...a fresh perspective. I know the doctors want him to wake up, want him to start responding, but I have decided that I need to let it go although not in the Elsa from Frozen kind of way.  This is my son, the boy who sleeps, the boy who watches Baby Einstein when he's not feeling well, this is the boy I know, not any other boy.

So...I've decided to take a different perspective...a new attitude. I am going to quit stressing out about my boy and just project the positive toward him. Tomorrow they will do another EEG to make sure that his seizures are being controlled. This is key right now to focus on the good. He is on two new medications to control the seizures and both of them make him sleepy. Surprisingly...he's sleeping! :)

So, today is the day of a new attitude. Today is the day to let things go. I am allowing those around us to surround our family with a blanket of love...I am allowing Javad to heal, let his mind rest, let his body heal.

I am remembering how things go in light of illness. It's time to just let it go...


Wednesday, March 25, 2015

Hurry up and wait...

Today was more waiting...waiting for the right numbers, waiting for movement, waiting for waiting. As I said before...I am not great at waiting. Patience is not my strong suit.

You might have noticed that yesterday's blog post was really posted at 3 am this morning. I couldn't sleep. Last night Javad was having some tongue flicking that I was worried might be another seizure. It lasted for fifteen minutes, which concerned me. Although the doctors came in and told me that the neurologist didn't feel it was seizure activity, I couldn't shake my feelings. The end result was me falling into a hard sleep early and then waking up every hour until finally deciding to stay awake at 1 am. After a few hours, I was finally able to go to sleep, although it was not quality sleep, that's for sure.

Today was a day that involved more waiting. We got his phenobarb level this morning which was 51, still not in the sweet spot of 40 - 50, but getting closer. It was finally decided that Javad should receive a dose for today (half of the dose given a few days ago) and then levels would be checked. This, I believe, will become the ebb and flow of the next few days...give medication, check levels, give medication, check levels and so on. Once we reach the sweet spot, we will know the dose that will keep him there. Once we have the right dose, we wait...wait for Javad to wake up, wait for him to start being sassy, wait for our boy to return.

I realize that our journey is long, we will be doing a lot of "hurry up and wait" in the next few days, months...there will be times when we are angry that things aren't moving fast enough and then other times when we celebrate the small victories.

There has been thirteen years of our journey but this particular road is one where I am unfamiliar. I am used to feeling knowledgeable, empowered, and this path makes me feel weak and useless, feelings I am not comfortable with.

I am in a whirlwind of knowledge grasping...I stand within this perfect storm, but until them...we hurry up and wait.




Time will tell...

We moved...

In the world of hospitalization, this is a step in the right direction.  Javad is still sleeping all the time and we are seeing only small pieces of our boy. The neurologist told me yesterday (since I am writing this pretty early in the morning) that they had inadvertently put him in a barbiturate-induced coma. The upside to this is that they have allowed his brain healing time, downside is that he has essentially been sleeping away the last week. They have been taking his phenobarb levels for the last 24 hours and they are still high. They want them to be between 40 - 50 and at last reading it was 58 (the highest was 71). They will take another level in the morning and, if in the 40 - 50 range, will give him another dose.

This has been a whirlwind as well as a roller coaster. My feelings are all over the map. I know that through the EEG they have seen differences in his awake and sleep cycles...he is responding to those around him, yet he is sleeping. It is frustrating. I believe with all my heart that we will get our boy back. I know that we have a long road ahead of us, but I want something...anything, that gives us a clue that our boy is in there.

I think that we deserve a little Get out of jail free card, a pass on this one. Throughout Javad's life he has come through so many things it almost seems unfair that a seizure disorder out of nowhere would be the thing that will take us out of commission.

I know that's not how life works, but I still want it. I am feeling a little angry at the world right now, angry that my sweet boy has to go through this and I am unable to help him. I talk with him, tell him that he can't move because of the medicine, and wipe his tears. It breaks my heart.

Tomorrow (ok...later today), I am hoping that we will see some glimmers from our boy. What I would give to hear a growl... Time will tell...

I'm just finding it hard to be patient.

Monday, March 23, 2015

The Tortoise and the Hare...our life in the PICU

Do you remember the story of the Tortoise and the Hare?

There once was a speedy hare who bragged about how fast he could run. Tired of hearing him boast, Slow and Steady, the tortoise, challenged him to a race. All the animals in the forest gathered to watch.  Hare ran down the road for a while and then and paused to rest. He looked back at Slow and Steady and cried out, "How do you expect to win this race when you are walking along at your slow, slow pace?"  Hare stretched himself out alongside the road and fell asleep, thinking, "There is plenty of time to relax."  Slow and Steady walked and walked. He never, ever stopped until he came to the finish line.  The animals who were watching cheered so loudly for Tortoise, they woke up Hare.
Hare stretched and yawned and began to run again, but it was too late. Tortoise was over the line.

After that, Hare always reminded himself, "Don't brag about your lightning pace, for Slow and Steady won the race!"

This story may become my mantra...slow and steady wins the race.

Today epitomized the idea of slow and steady. To many, it would seem uneventful. Javad slept for most of the day...a side effect of the phenobarbital, one of the anti-seizure medications he is on. Small pieces of him emerged when we did things he didn't like...suctioning his nose (which he hates), stretching his legs (physical therapy is so mean...lol), and moving him out of his comfort zone gave us a grouchy face for sure. I am both happy and sad that we caused him to be grouchy...happy that he is showing up and sad that we're making him sad.

The next few days (weeks, months) will be like this. We will be doing things he doesn't love and he will be a grouch, but this is what we need...Javad making his way toward the finish line...being a turtle. Ironically the animal that represents the PICU is a turtle...maybe this is a subliminal message to all children and families on this floor...slow and steady wins the race.

Each day we are here I am learning more. It is interesting that after thirteen years we can be in a space of learning something new. I have never thought much about brain waves or EEG's, but now I find myself fascinated to learn more about them. We were told today that Javad has a definite difference between sleeping brain waves and awake waves, which is encouraging. It confirms all the things that we know are true...our boy is there, just buried under seizures and, now, medication. He will emerge, in time...in his time, as always.

My heart is warmed by the community around me, people that are showing up in our time of need. On Facebook my wall is filled with giraffes, Javad's spirit animal, and the strength I feel from the pictures is immense. I had some unexpected visitors today, Meredith, who brought me a chai, Chris, whose thirty year old son has MTM, and my dear friend, Rodney, from Reynolds, where I work. It's amazing how a visit (and some cream soda!) can improve one's day.

 Although this week is not what I expected, I remain hopeful. Talking with Rodney tonight reminded me why I do what I do. It made me think about the kids that I love working with and the impact that I want to make. I am reminded of the road my family walks and that, from the outside, it is challenging. Although I, at times, brush that away, it is true that we walk a road that has an emotional and physical toll and we need to care for one another.

I know that this is not a journey of speed, but rather a journey of persistence and endurance. We have been on journeys like this before...we have met the challenge. It is time to walk by those who are slumbering and continue on the path that has been given to us. We will beat this opponent, as we have succeeded in the past. We know the work that is required and we rise to the challenge.

We are ready...slow and steady wins the race and we are definitely in it to win it!

Sunday, March 22, 2015

And now we wait....

Waiting is perhaps the hardest thing....I am not, what one would call, patient, but over the years, this boy has taught me to slow down...take the world in.

Years ago, when Javad was truly the littlest, he spent six months in the PICU at Emanuel. It was the old PICU, the one with no windows and the nursing station in the middle. I spent many a night talking with nurses, doing the crossword puzzle, having my life in the PICU. Each morning I would wake up and get ready for work, then come home to the PICU. It is not the beautiful place we have now at Randall, but it was home.

During that hospitalization, my friend Juli and I trained to walk the marathon. Each Saturday she would pick me up, we would go for our training walk and then she would drop me off at the hospital to be with my boy. We did this for six months of Saturdays, each week walking longer, strengthening our bodies and lungs to finish that final goal of 26.2 miles at the Portland Marathon. Javad was released in August, just in time for the home stretch. Juli and I walked the marathon in October, then in November we walked the Seattle Marathon. It was a glorious accomplishment...one I have not completed since, but the training, I now realize, was preparations for the road ahead of us.

We are here again...now in this beautiful room with a view of the mountains. I joke that we paid for this room, although with all Javad's hospitalizations, it might not too be far off. He is being taken care of by many who knew him as a baby. Nurses marveling at how big he is, yet how he looks the same. I know that they, too, are concerned. They know that what is happening with our boy is not good. He is having seizures...ones we can't see. They are giving him meds that sedate him and, although in time his body may adjust, he is sleeping...all the time. I know his brain needs to heal...we will give him time.

Meanwhile, we wait.  Waiting is the hardest part. I want him to growl that he is unhappy...I want him to point to his eyes for his glasses...I want my boy back. This will require patience. Like training for the marathon, the results will not be seen overnight. We have weeks, months ahead of us. Times where we have to patiently walk, knowing that the journey will not lead to the end. The training is the hardest part. There seems to be the task without reward.

We will train with the boy, knowing that we are making him stringer with each move we make. We will build our team to make him the strongest he can be. Each task before us done with diligence, each movement with meaning. Time is not our enemy, but rather our friend. A blanket of healing will surround him, surround us, to train for the journey ahead.

This is a marathon, not a sprint. Marathons take time...time that feels as if it moves too slow. At the end, when we receive our medal, our boy growling and smiling, the time will be worth it. Every moment of work and sweat. Every tear shed will find victory at the end.

But until then....we wait.