Glenn Doman, the founder of The Institutes for the Achievement of Human Potential, passed away. In my opinion, he was one of the greatest gifts to brain injured children. Thankfully, his legacy will forever live on.
Aviana happened to be too hurt to continue on with this program. That doesn't mean we didn't take a multitude of good away from all of these people - lessons we use everyday and will for the rest of our lives.
I feel so fortunate to have met, and seen Glenn lecture the many times we were in Philadelphia. I have never before been witness to someone who, at their core, loved and cared for our child as much as he, his family, and the staff at The Institutes did.
I can't even imagine what it's like there without him. All I can do is wish them our love.
The Doman Family:
Glenn Doman, his wife Katy, his daughter Janet and his son Doug.
I know all of this has been a little jumpy. I guess it's been a little hard to put into words. I've found it to be a pretty exhausting process to go through, but as with this whole journey - it's a process. It's all about finding a place for all these various pieces to fit.
So as the story goes...our actual pediatrician left Kaiser, and we were in need of another. This was okay by us, as we were going to need to find another had she stayed anyway. She was really rigid and not open to suggestion. After the accident, my mom and I had taken Aviana for an appointment and she had said something so outrageously rude to my mom. I swear you all would have teamed up and plowed her over. My poor mom, I felt awful. Saying it to me, that's one thing. Taking your own aggression out on my mom for no good reason, especially after all she had just recently been through, well now we have a problem. I think she was on her way out and really just didn't care. It was time to move on anyway, but you know what an ordeal finding a new doctor can be. On top of that, when the time finally came to actually find another - I was shell-shocked so I just wasn't looking forward to it!
I eventually just picked one who looked good, hoped for the best and called it a day. I was actually dreading the appointment because I knew the content was going to be about something I wasn't comfortable talking to a brand new doctor on our first meeting about. My mom went with me, because at one point I wanted her to wheel Aviana out and walk the halls - for both of them...
But how did I arrive at the pediatrician office...do you remember the game Frogger? I'm going to jump back for a second. I know, I've got hops! You should see what my mind has been like for the past month!! I swear this is concise!!
Just follow me, I promise you won't get lost...maybe ; )
As I've said, after what happened last year - we knew we needed further guidance - from people who understood what we were going through. We needed a group who we could talk to, people who would empathize. Those who would be able to help us with our goal for Aviana, that being comfort above all else.
At first I did nothing. Then, I began my search for something of this sort. Who? Where are these sorts of people? Who could help us? Who could be of service to us and for us? Searching, searching, searching and then, there it was - there they were. I had never heard of them. I didn't even know they existed. As I read, I wondered. How could we have had a child like this for so long...made our ultimate wishes known to so many, for so long, and not one single person had uttered these words to us? Are they a secret? Are they another dirty little secret that no one wants to talk about?
Have you heard these words? I searched further and wouldn't you know it, Kaiser has their very own program. The very place where this failed liver biopsy went down...there's a Palliative Care Service Program. Had I been privy, they could have helped us! They could have been by our side to help decipher what was going on last year. Maybe everything would be as it is now, but who knows? I wish they had been included in that family meeting!! I knew I needed to get in first with that pediatrician and then with this department. This way, in the future...my promise to Aviana would be that - a promise.
First things first. For those who have never heard of it -
Affirms life and regards dying as a normal process
Neither hastens nor postpones death
Provides the relief from pain and other distressing symptoms
Integrates the psychological and spiritual aspects of care
Offers a support system to help members live as actively as possible until death
Offers a support system to help the family cope during the member's illness and in their own bereavement
- fully understand your illness and treatment choices.
- improve your comfort, strength, and well-being. This includes relief from pain, loss of appetite.
- ensure that all of us at Kaiser know your goals for how you want to live, given that you may have some chronic problems to live with.
- develop a plan for your future personal needs and care so that every member of the care team, including your family, understands and respects your wishes.
- complete an advance health care directive so that your family and medical team work as partners to support you, should you become unable to speak for yourself.
My gosh though, going to a new pediatrician, talking about this, ugh! I felt sick to my stomach before I left. As hard as it is, we know it's the right thing for our family. Palliative and Hospice have a lot of similarities and some differences - one thing that is always kept at the forefront with both is the patient, and what the patient would want. So...most importantly, it's the right thing for Aviana. If she could speak, she would want this and that is what pushes me/us through. I'm telling you though, this is the single hardest thing we have had to do since the accident!!!!!!!!!!!!!! It's hard to put yourselves aside and do what's best for her. It's hard to ultimately separate the two. Like I said, it's amazing what you can get used to, and Dave and I have honestly gotten quite used to this; more than I ever thought we would. It's really hard in one way - because we love her, and really peaceful in another - because we love her. Dichotomy - to the end.
Hippity Hop, I don't stop.
Back to the pediatrician : )
Someone was looking over me. The new pediatrician was heaven. He was a dream come true. He was gentle and loving. He was perfect with Aviana and my mom. After I sent the kids on their way ; ) I talked to him about the difficult stuff. I, of course, cried like the baby I am. Our new doctor was as sweet as sweet could be. He said he has never had to deal with Palliative and didn't know anything about it, but he would make sure to find out everything he could and point us in the right direction. He sent nice emails, and followed up on everything he said he would. He was just what I so desperately needed.
We next had our Palliative meeting. I wasn't nervous this time, because I knew these people were there to help us, to guide us. I did however know it was going to be really hard to hear the words falling from others' mouths. You know how it's one thing when you talk amongst yourselves, but a whole other story when it comes from the lips of another? I had a feeling that would be my biggest challenge, that and the fact that it would feel all too real.
Kaiser offices are usually so opened and inviting. This one was truly at the end of the road. It was on the 4th floor at the end of the hall, and recessed. We had to knock on the door and wait to be let in, so un-Kaiser-like. It felt kind of gangster. We were laughing in our own - laugh when things are truly heavy - fashion. As I was retelling the story to my Uncle, he was joking - did they ask, "what's the secret password?" In a whisper..."Palliative." We have to, or our heads would have blown off long ago!
The doctor and social worker were amazing. They had read all about us before we arrived, but asked about everything anyway. We explained how we felt in the beginning about quality, our journey through recovery, her liver, and how now all we want is for her to be as happy and comfortable as possible. We explained what happened the previous year and how we don't want her to suffer anymore. Above all, we don't want anymore pain as she has seen far too much in her short life. They agreed and said they will help us with our goal every step of the way. They will be there to help us with decisions as to if ways of her passing are comfortable and peaceful, etc. I don't want any of you to think anything is happening right now, but they will be there for us as things come up.
We talked for a while and at the end, they asked how we felt it went. I cried. I told them I thought it went great. We talk as a family about keeping her comfortable and happy, and out of painful situations but we've always felt there isn't much we can do other than what we already have by way of Kaiser, etc. I explained that knowing they are there for us, and having a resource in them makes me feel good and confident moving forward. I wish I'd known about them years ago, I would have definitely sought them out.
The meeting was hard, harder than I thought it would be. This kind of stuff sticks with you after returning home and thereafter. I just have to remember one thing though - as long as we follow Aviana's lead we will always be ok.
It seems the longer we've had Aviana like this, the more blurred the line has become. In a sense. At first it was cut and dry. If she won't be the little girl she was, if she won't enjoy the life she once knew, absolutely not! But UCD said we should give her a chance, so we did.
We gave our right, left and every limb, ligament and tissue we had toward her recovery. In the end, we had to step back and be honest with ourselves, and most of all - Aviana. We had to face the reality, even if it was the most painful of all. That truth holds a mirror to your face and what reflects back on you once again is quality.
I have to say, with time and routine, it's funny what we've gotten used to as a family. What's even trickier is what the mind will do when death, or the prospect of, is staring you in the face. We have sometimes doubted or had to re-evaluate our very own absolutes. Where's the dictionary? Because it seems I have sometimes forgotten and have once again needed to look up the word 'quality.' I have, at times, lost my compass in those chocolate brown eyes. I've had to ask Dave, my Uncle Roger, my Dad, and my Aunt Paula, "what is quality?" Maybe she is completely happy. Maybe she is fully content. Maybe she's where it's at, and we are all messed up. Is it selfish of me to let her go? Or are we keeping her here selfishly...for our purposes alone? At times, it can be very confusing and something you would rather rip your toenails out one by one with a pair of pliers than think about. Truly.
Like I said, so cut and dry in the beginning and now so muddled. There was a direct comparison in the beginning. There was a healthy, vivacious, full spirited, burst of AVIANA bouncing around and then, BAM - no more! Now, 4 years later - we are used to this, and we love her so very much.
I have talked about acceptance a lot lately, or maybe I haven't. It's on my mind...a lot, that's all I know. We truly are at a much more peaceful place, but you know what single thought almost gutted me from the inside out last week? I was minding my own business in the kitchen, cutting some artichokes and wouldn't you know it, my heart...sidelined.
Acceptance is all great, but I do believe it's mostly for us. As far as Aviana is concerned - acceptance in a way is nice for her too, but the realization I had is this - the little girl I knew before the accident would NEVER WANT US TO ACCEPT HER AS SHE IS NOW!!!!! That realization stung in a big way. It burned because acceptance felt so good, so soothing...for us! And, while this seemed like such a revelation, I quickly realized, it really wasn't at all. I honestly felt it all along. Things can all be so confusing at times. Because she can't speak for herself, it's sometimes hard to separate our needs from hers. At times it can be a guessing game!
So because I'm her mom and know her best of anyone, I must go with my gut. Thankfully, my gut is usually always right. For those of you who knew Aviana before, this will be nothing new to you. She was the most independent child you had ever met in your entire life! Hmmm...I wonder why it was hard for me to bond with her. She wouldn't let me do anything for her ; ) She was fiercely independent from the second we met her in Guatemala. She hit the ground running. She knew what she wanted and by God she was going to get it. She had to figure everything out herself, and didn't want any help...ever. If you've been here for any length of time, you knew her motto was Avi Do It! That post was my first one really about her and was from 2 days after the accident. I must never lose site of who she was.
The list goes on. She was fearless. She loved a challenge and faced every one, head on. When she was in diapers, she could change her own, and would insist on it! She sometimes became a sideshow act. We would laugh because she could do it all, she would run and grab her two pairs of pajamas (she didn't sleep with blankets or a pillow yet - we thought she would suffocate, imagine that), her overnight diaper (she knew the difference), and a wipe. We would all just sit and watch her. She would take all of her clothes and current diaper off and put all of the other gathered items on perfectly. She took pride in everything she did. She picked out her clothes for the next day. She did not like me helping her, or hovering around. She liked to shut the door and surprise me with the fact that she did it all by herself. She liked to put her own shoes on from a very young age. She potty trained almost immediately. She was so proud of how she could take herself to the bathroom, wash her hands, everything. She loved to figure all of her puzzles out, without help of course! If I tried to help her, I would get 'the look' and an Avi Do It would surely follow. Throughout the day, everything had to be done by her...all the way until she put herself into her very own bed.
She was from Guatemala, and heard Spanish for the first 11 months of her life. I thought her speech was delayed so I put her into therapy. Kathy came out every Monday and Aviana would grab her by the hand, pull her into her room and shut the door because she wanted to read books. Kathy called her, "Own Agenda Girl." Aviana caught up quick and was released just 2 days before her accident. She was the quickest learner and was on her own incredible path.
Maybe it's a coping mechanism to try and forget these things because there isn't much we can do to give her any of her independence back. I wanted her to ride the bus in order to give her something. It kills me something deep for this girl especially to be so reliant on us. I think we have all died inside everyday to know how independent she once was and to see how much she depends on us all now. We all have our own ways of dealing with it - avoidance, acceptance, whatever we do to get through. We of course do everything with love for her, but that doesn't mean it doesn't hurt.
If I let myself, and I need to for some decision making purposes -
Wearing and having a diaper changed at the age of almost 7 - would devastate this child.
Having her clothes picked out, each and everyday - would devastate this child.
Having her meals picked out, breakfast - lunch - and dinner - would devastate this child.
Carrying this child to and from, all day long - would devastate this child.
Sitting and laying in the position I place her, unable to move - would devastate this child.
Falling over and being unable to right herself - would devastate this child.
Being unable to accomplish one single thingby herself, for herself - would devastate this child!
Never mind - these things would devastate me too, and I suppose that is why my wishes are known.
So no. Deep down, at the heart of the matter - we know. We are sharp as a tack, and straight on when it really comes down to it.
So where was I? Oh yes, I signed and vowed. Signed and vowed. Well that wasn't enough. I knew we needed further guidance - from people who understood what we were going through. We needed a group who we could talk to, people who would empathize. Those who would be able to help us with our goal for Aviana, that being comfort above all else.
It took me some time to recover from that week at Kaiser. I didn't do anything at first. I think I was shell-shocked. I haven't written about this once, as I was and still am so deeply affected by it. Like I said, when something truly rocks me, I turn inward. So much so...I can't even utter a word about it. I stuck up for the doctor who did the liver biopsy to everyone I knew. He was by far Aviana's best doctor! He loved her, and us, always.
Every time we came back from The Institute, he was right there waiting with opened arms and as supportive as could be. Please understand, often times, traditional doctors don't always embrace what they at The Institute are doing, or prescribing. I always appreciated our doctor because he had an opened mind and saw that it made perfect sense. Above all - he wasn't too proud to admit that what The Institute recommended for her diet and well-being was working over what they at Kaiser were attempting! For that reason, he always ordered all the insane amounts of blood work we needed, and did everything he could in support of our efforts to and from Pennsylvania every 6 months, etc. He and his office were Johnny on the Spot, they were like white on rice. I made sure to always let them know how I felt about them. In fact, I made a point to skywrite it all over Kaiser! That's how much I loved this office.
So when all this went down, he was first and foremost still our doctor! I think you all know my take on things and I'm the first to always say - accidents happen! Things happen! We are not perfect beings! If you've escaped things, it's by some sort of grace, but this all could very well happen to you too! Well that's the same take I had about the failed liver biopsy. I still loved this doctor and I knew full well it was an accident, and was treating it as such. Of course I wasn't thrilled with all Aviana was potentially about to embark on, so that is the reason we had to back up and re-evaluate the situation. We explained our reasoning to all of the doctors involved, and our main doctor seemed to understand with his entire heart. He even said if in her situation he wouldn't want to live that way and has made it known to his wife. So I knew he understood where we were coming from.
After the family meeting, Aviana was rushed back into surgery. As the worst week pressed on I continued to see Aviana's other doctor whom I also love, but someone was clearly missing and in a big way. I gave it time. Scratched my head. Looked at Aviana lying there day after day. Felt really lonely. Finally, as the week was closing in, my sadness turned to anger. Where the hell was our doctor? The one who has loved and supported us most in the last 3 years? The one who has been there for us? I had to get out of there. We had to get out of there. On the second to last day, when something so traumatic happened that I will never write about it, my anger turned to downright rage. Why hasn't he even bothered to check and see how we are doing? Just once?!? Why hasn't he even picked up the phone to call? Where was Johnny, the star of Johnny on the Spot? I felt so betrayed.
After many days home from the hospital, he finally called to check on us. I was flat and deflated. Indifferent. He asked if I had any questions. I said, "we're fine, no questions" and basically hung up soon after. I was instantly pissed at myself. Idiot. That's not at all who you are. My heart was racing. I quickly gathered my thoughts. I wanted his honesty. I really wanted to know the truth. I wanted to hear his heart. We had come too far to go down like this. I decided to ask my one and only question gently. I wanted to truly know, my gosh...I needed to know. I called right back and said, "yes, I do have one question. This was one of the hardest weeks for our family and I just wanted to know, where were you?" He said he was in some meetings, then on vacation, then asked if I saw someone from his office there, because he asked this person to represent his office. I said no, I didn't see or hear from anyone from his office. I could not believe my ears. So much flashed before me. My eyes were stinging. Not yet. After everything we had experienced - meetings, vacation, and the tone of his voice, so nonchalant. I explained I had my answer, I understood. Before I could even hang up the phone, the tears. Our perfect relationship was over. All of the support I once knew for our daughter, up in smoke. I hung up and crumbled.
I was left to wonder. Wonder: was this whole situation too much for him? Especially when we decided to maybe let her go? Doctors are used to fixing, fixing, fixing. He was the absolute perfect doctor with a spotless record; did this rock him in an indescribable way? Did Kaiser ask him to take a leave after what happened? Did they ask him to keep distance from us? Was it true that it would have been like burning her at the stake? Was that total cya? Why did I stick up for him, when he couldn't even check on us once? Were all of our best doctors looking out for our best interest? I'd like to think so. Am I naive? Always like to see the good in people? I've kind of always been that way, but this whole Aviana thing has made me grow up some, and open my eyes. I so love this group of doctors, so in the dead of the night, when everything is quiet and the thoughts start dancing...I sure hope everything was handled with only love and good intentions. I still miss our main doctor so much, and that is why the pain is so deep. A piece of my heart is broken.
I once again veered into the unforeseen, so I never got to what I meant to write about.
My gosh, I absolutely loved reading every single one of your lists. If they never stopped appearing, I could keep reading all year long. I should have included this as one of mine (actually, in a past post, I believe I did. Yep, I had a feeling I've done this before and it's #8) Well, I'm going to add it again.
26. I love reading other peoples' lists!!
I can't wait to go back and comment on them either! I was laughing, nodding my head in agreement, tilting my head in - I should try that, and all sorts of things! Loved it!! Thank you!
So many times in the past I've said, 'light to counteract the heavy' or referred to some sort of appointment of Aviana's, etc. It seems this one sparked some interest and even a little concern. That was definitelynot my intent. In no way did I want to be one of those annoying breadcrumb dropping fools ; ) I was just speaking as I have many times before.
I had other posts lined up prior to this one, but now I'm going to go ahead and begin explaining...
If you've been here for any length of time, I believe you know from the get go it has been our wish to let Aviana go if the time came. As a family we have fully believed in her quality of life. Therefore if her quality isn't good, it's our plan to evaluate along the way and let her go should something arise. Yes, these words are very difficult to type and the meetings and discussions along the way have been that much more difficult to sit through!
We were told very early on while in the hospital that it was in our best interest to put a DNR (do not resuscitate) in place as Aviana has severe brain damage. If anyone tried to resuscitate her they would only cause more, so we agreed and have had one in place since.
The only reason we continued on in the hospital was in hopes of our fiercely independent girl making some sort of recovery. So as time and our recovery efforts yielded no results, we moved into accepting Aviana for whom she is. We were moving along, learning to live in these new roles, when we hit a speed bump.
We had been fighting her liver pretty much since the accident. Her numbers have been really high, and all efforts through diet have pretty much fallen flat. We finally decided to have it biopsied. A fatty liver was suspected, with a 25% chance of cirrhosis in the next 10 years. If she weren't brain injured, she would have been immediately put on the liver transplant list, but...she is.
As you may remember, we asked to have her head and biopsy done at the same time in order to put her through one single surgery, instead of two. This is a girl who bounces back from surgery after surgery like nothing. This time was different. This time - she was moaning and groaning like I had never seen. This time she was clearly in pain. As it turned out the doctor went right through her liver and nicked her colon. Well, they didn't tell us this for a few days.
We had to immediately rush her back to the ER. At the time she had a shunt so avoiding infection was crucial. They were going to have to externalize it and also go in through her stomach to fix what they had punctured.
Dave and I called a quick time out to back up and discuss the whole situation with them. We are Aviana's voice and because we have one, we owe it to her to use it every step of the way. The very last thing we ever want for her is more pain, discomfort, continual hospital stays, and to once again see her as a human pin cushion. It's our job to balance out her quality of life vs. her comfort and well-being.
We called my Uncle Roger, my Mom and Gary and then the two of us went straight into a family meeting to discuss the possibility of letting her go. Talk about wanting to be a kid again, my gosh...did I ever!!! These family meeting moments are absolutely surreal to me. As many as we've had the pleasure of attending, they are something I will never get used to!! "Is this really us, talking about our daughter? But, we're all still kids. Did those words just come out of my mouth? How on earth did we get here...again?!? Are these walls closing in on me, because I feel like they are! And what's that picture doing there? Hmm..."
In the end, we were told by the doctors that it would be like burning her at the stake if we let her go that week. Well, that settles it now doesn't it? Many have weighed in, including lots of Kaiser doctors who have heard about this. Of course everyone has his or her own opinions. At the end of the day, Dave and I could not take the chance with Aviana.
I only included a few posts last March because it was definitely one of the worst weeks of my life. The pain was too deep and multifaceted to relive in the writing and retelling. When things go really sideways, I tend to turn inward. I still have yet to fully process all that happened - what I saw, what I felt, what Aviana and I experienced.
There's a lot I don't remember from that week - by choice, but what I do remember is this...I sat and watched all week as my daughter was moaning, groaning, crying, poked, prodded, and stitched. I remember the blood and tubes coming out her matted head. I remember the numerous holes in both her black and blue arms, her hands, her foot, her tiny little stomach and sides. I remember the far off blank stare in her eyes, as if she were looking straight through me. I remember them continuously fishing for her veins, this arm, that arm, how about the foot. Repeat.
I was beyond devastated that once again - she was a series of someone else's unfortunate events. She was once again taking the fall, the brunt of it all. Through a mixture of tears, anger, and downright sadness I vowed one single thing to her, "this Avi, I promise you...this will never happen again!"
At the time we knew it was crucially important to have everyone on the same page, so if ever anything happened again - there would be no question as to what our wishes are. Many things were a complete blur that week, but I do know I asked for them to send all of the people up, and more of the appropriate paperwork. As I looked at Aviana lying in the hospital bed, with all that junk sticking out here and there....I signed and vowed, signed and vowed.