Tiny Salutations

Tiny Salutations

About

Thursday, April 21, 2016

A letter to my husband, from your wife with chronic illness

To my husband......

We have had a wild journey together, sometimes arduous, sometimes jubilant, sometimes so pure and beautiful, sometimes downright painful. Tomorrow, it will be our sixth wedding anniversary (although we have known each other for 12 years). I doubt you pictured our life as it is now on that day you said "I do". I'm sure you saw a future of children running about our feet, accomplishing big things, seeing beautiful places, working hard so that we could want for nothing, heck maybe even me whipping you into shape so that I could drag you up mountains with me.

That vision of our future that you may have had on our wedding day has not quite come to pass. On another very important day, the day of our first and only child's birth, illness took that future and replaced it with another. That day produced a new future in which your wife and child are both permanently ill and disabled. Sometimes I forget how much this life is yours just as much as mine. I shamefully admit that sometimes I think that it is not as painful or as difficult for you, because you are not the one who is ill. I know that it is difficult for you as well though.  It is difficult to worry about your special needs child. It is difficult to see the woman you love suffering. It is difficult to know that neither your son nor I may ever get better, and that you will likely out live me. I can only imagine how it must have felt near our son's birth when you were told that you may lose us both.

So, for our anniversary, I would like to thank you for some of the things that you have done that you didn't expect on our wedding day.

Thank you for driving our son and me hundreds of miles a week, and sitting through an average of 8-10 appointments a week, so that we may receive the care we need.

Thank you for attempting to be as environmentally conscious as you can, just because you know it is important to me... like our first date when we went to the beach and picked up discarded fishing line.

Thank you for strategically pulling over on the freeway so that I don't throw up on the car. And washing the car, and the plethora of other inconvenient places, when I do.

Thank you for carrying me to the toilet, dressing me, and bathing me, countless times when I've been too sick to do it myself.

Thank you for showing me that movies can be just as cool as books and for opening yourself up to the fact that books can be as cool as movies. (Especially sci-fi, fantasy, and time-period genres!)

Thank you for doing the heavy lifting in our son's care- including most of the diaper changes- and protecting me when you can from his aggressive meltdowns.

Thank you for resigning your life to poverty so that I can get the medications (which are many, many thousands of dollars per month) and healthcare I need.

Thank you for complementing my skill set so well that we can fix anything between the two of us, especially with your knowledge of cars and computers.

Thank you for doing everything differently, often without a word, so that it can be adapted for our entire family to enjoy.

Thank you for listening to my constant, and sometimes irrational, worries and anxieties.

Thank you for holding my hand when the pain is too great.

Thank you for teaching me that family, and relationships in general, can be really meaningful.

Thank you for caring for our child by yourself when I need to rest, even when I don't want to rest.

Thank you for picking me up off the ground the countess times I have fallen.

Thank you for the healing laughter in that magical time between child bedtime and parent bedtime.

Thank you for walking to the kitchen or bathroom with me in the dark after we watch a little too scary movie.

Thank you for encouraging me to do the things I love more than anyone in my life ever has.

Thank you for being by my side, holding me, and crying buckets of tears with me when they told us that my chances of living through my pregnancy were not good and our son's nearly impossible.

Thank you for reminding me that I am human, not superhuman (yet).

Thanks for laughing at my jokes, enjoying the rather in depth backstories I make for everything, and general silliness that is what hold us together.

Thank you for teaching me a lot about myself and how to be vulnerable.

Thank you for trying to keep me present and trying to make the best of "now", instead of worrying about the future of worsening illness or even a shorter lifespan.

Thank you for dragging my wheelchair and me through terrible, horrible, no good terrain just so that I can see the things I long to see and to rest my heart that was accustomed to exploring from the tops of mountains to the bottom of estuaries.

Thank you for particularly dragging my wheelchair through the mud for 4+ hours (which would have taken a person on foot about 30-45 minutes to accomplish) around the tulip field that we were married in, just because it has such a symbolic meaning to our marriage.  (Continues below photo!)

Timeline of amazing memories every year in the tulip field in which we were married (another anniversary gift!) 

Thank you for being my partner in raising a special needs, but incredible little boy. (Continues below photo!)
Timeline of the amazing memories with our son since he was born (with the exception of his time in the NICU) in the tulip field in which we were married

Thanks for being here with me, where it is difficult and painful and often in 'survival mode', instead of deciding that the easier path is the better path.

I'm sure that there is so much more that I am forgetting here, but I hope this is enough to show you that I care, and I see all the wonderful things you do, even in the moments that I feel too miserable to find it in me to tell you.

I love you very much! I'm glad to have had you in my life through all of the crazy twists that we have come upon in our journey, and I'd love to have you by my side for all of the crazy twists in the future.

Here are the remaining photos from our tulip field pilgrimage this year....

Smelling (or kissing) the tulips


Falling in the slippery mud
Jumping through the mud (left), The unspeakable horror of muddy hands for a child with autism





L and me
Tulip rows (left), L is so unusually gentle with flowers and plants (right)

It was extremely muddy this year- absolutely terrible for a wheelchair, but great for puddle jumping





Definitely kissing tulips- he loves to kiss plants, trees, and especially flowers
Family photo
"Evil Queen" tulips, as we call them in our family (left), tulips reflecting in a puddle (right)


I love you! Happy Anniversary! 

Wednesday, April 13, 2016

Airway surgery

Post surgery recovery
I know you have all been on the edge of your seats waiting to hear how L's surgery went.

The surgery had several intended goals, which were to perform several scopes throughout his airway from mouth to midway through his lungs, to attempt to correct his aspiration (liquid going into his lungs rather than his stomach), and the possibility of correcting other abnormalities detected in his airway (tracheal stenosis being the most likely, yet still unknown, guess).

Sunrise on our way to the hospital
Not a fan of waiting
We woke up very early, packed up everything, and headed out to Children's Hospital. We left early enough to drive into the sunrise for a good stretch of the way there. Once there, we waited....and waited....and waited. This was certainly L's least favorite part of the entire surgery, as you can see in this time series photo. 
Snuggled up with penguin before surgery
Drawing in his getting ready for surgery book before surgery
We brought his penguin, which is his favorite animal by far, and his stuffed animal from adopting a penguin family for his last birthday. Fortunately, we had watched a show with Jeff Corwin called Ocean Mysteries before surgery, in which he saved baby penguins by certain medical procedures. He is obsessed with penguins and was then obsessed with saving penguins. So at the hospital for surgery, whenever they were doing some medical unpleasantry, L did it to the penguin while the nurse or doctor did it to L. We also brought surgery prep materials from Seattle Children's website, including the coloring book above.

Finally, the anesthesiologists came to bring him back to the OR. It was very important for me to be with him as he fell asleep. There was the issue, though, of my wheelchair, which is basically a giant shoe, coming into the OR with me. I offered to leave it outside the door of the OR, to which they added it was "right across the hall". So not right across the hall. It was down the hall, something which the nurses realized very quickly was not something I could actually do, so thankfully they extended their own arm (okay arms) to help me. I did make it though, and I was with my baby as he fell asleep. 

So then while in surgery, we waited... and waited. I felt like I was going to explode with anxiety. Every parent is worried about their child under anesthesia, but any parent who has had a child with a history of a difficult and rebellious airway, one that has not been easy to wean off of respiratory support. So, pretty much panic attack. I felt fairly sure that this was similar to the start of every odd historical account of spontaneous combustion. Anyway, goodness, this is not about me. 

Then, they page us after only 30 minutes or so of surgery... a surgery that is scheduled to take two hours. So I speak with the ENT doctor on the surgery desk phone. He says they have found something unexpected that they would like permission from me to remove from his airway called subglottic cysts. I say yes absolutely, but I don't know what they are. So while I sit and wait some more, I research them, looking at medical journals. The simplest description is that they are masses that obstruct the airway. It turns out that they are extremely rare and dangerous and difficult to find without a scope (like the one done at the beginning of L's surgery). They happen in children that have been intubated for long periods of time. The tube during intubation damages so much of their respiratory system, but is the only option to keep these children alive. In this particular issue, the tube damages the area just below the vocal chords, creating masses obstructing the airway. This could be a big contributor to his past emergencies requiring immediate intervention to open back up his airway.
Two articles about subglottic cysts can be read here and here

They also attempted to correct his aspiration by injecting a gel into the area of his larynx where there seems to be a defect to "plump" it up. They also examined his airway for tracheal stenosis, which was suspected. Tracheal stenosis is basically a hardening and narrowing of the airway, which is also caused by intubation damage. They had thought at first, yes, but then no. So the final decision was that he may have tracheal stenosis (it looks like it shape-wise), but that his trachea was still large enough, even with it. So the decision was made not to correct it. That is an additional surgery on top of the others he had received that day. 
Post surgery Mama snuggles and The Giving Tree
Post surgery Mama snuggles & kisses and The Giving Tree
Post surgery

Post surgery
So after the scopes, the removal of all nine of the subglottic cysts, correction attempt of the aspiration area of the larynx, and analysis of tracheal stenosis..... we waited some more. For some reason, they did not have us come back to see him as he woke up as we have talked about before surgery. We did finally get to see him after he woke up. They put him in my arms, and the anxiety disappeared. He was crying from pain, but I read him books and held him close, as we waited for them to bring some medications. He was able to wean off of respiratory support much quicker than they had expected.(Yay!) They ended up sending us home that night instead of the original plan to be released the next night.  
The night of surgery, he got a tiny treat for being brave, a tiny secret Minion (the packaging makes it a surprise as to which Minion you get). He was happy about it.

Opening his secret Minion post-surgery-treat (left) and doing a medical exam on his penguin including but not limited to intubation (right)

L and penguin comforting each other after both receiving surgery
He came home and snuggled for a few days while he recovered. He felt pretty well, except for some pain the first few days.  We actually had to keep him calm the first few days since his lungs were a bit swollen and causing a little difficulty breathing when active. He recovered pretty quickly though, given the circumstances. 
Pinwheels at Children's Hospital at follow up
L blowing on the pinwheels at Children's Hospital
Peering curiously at what he gets to sample this time at his swallow study 
Waiting patiently at his swallow study
Watching the swallow study which kind of looks like an x-ray video
Nearly two weeks later, we went back to do another swallow study to see if they were able to correct his aspiration issue. Unfortunately, the issue was slightly worse. He now had to increase the thickness of his fluids! The doctor said that kids don't usually get worse with aspiration, so that part is a little odd. During his swallow study, though, we can clearly see that it is no better.  During his surgery, they found evidence that he was still aspirating at the previous thickness we were using. I was disappointed to hear that because, we were so very strict about it. So now we are trying to get used to the changes. It seems that he is not strong enough to get the fluids out of the cup now that it is thicker. I don't blame him, it is called "honey thick", but it's nearly like pudding. He has always had issues with this kind of strength, so it is not a surprise. It is not great though, because now he is not getting nearly enough fluid. 


So overall? The surgery was good, because we found some dangerous defects, which were removed, and got a better sense of what is going on in his respiratory system. The surgery failed though, to correct his aspiration. Overall, though super stressful beforehand, I think the surgery went well. 
Dad helping to feed L during swallow study
Mama reading to L in the waiting area at Children's