Friday, July 31, 2015

Say Something


Last week was a disaster. Between me developing a corneal ulcer on my right eye. Which my eye doctor said could totally be brought on by stress. (HA HA!) I think that is why I pushed publish on the other post. I was carrying so my on my heart. However, I did not know that Chris was on the email list. (Hi Chris).  I hadn't posted in so long I just didn't even think about it. It is double edged sword how I felt about him reading it. Glad that he saw that this has weighed heavy on me for a long time. Sad that I put stress on him because now he has seen it in black and white where my heart and head is.  I know he is reading this too, and I am not going to censor myself. It truly helps me process to write.

I have been describing our house as a buzzing bee hive of stress. The girls, as much as we have tried to shield them, can feel it and have been acting out accordingly. Lily has been stemming HARD. Her anxiety has hit a high we haven't seen in sometime. Her fingers are raw, she is pulling her hair, and flossing, digging at her legs, pulling at her ears and very easy to tears. Normally we see one maybe two of these at a time, not several. Charlotte is hanging in there, but has been teary and clinging. I come home from work and girlfriend glues herself to me until bedtime. Last Friday we were able to get Lily into see her therapist for an emergency appointment. I will say that since then she has been maybe a smidge better. I asked her this morning before Charlotte got up how she thought the week went and she told me that she still had a lot of worries, and she is scared.

We have been honest with them that Daddy is having surgeries. We were going to show them youtube videos but, Chris watched them and yeah, nope. Too much. So we talk about it instead. Lily started asking about Chris dying. A lot. Like all day long. To which I always say, 'that's not the plan!'. Try to keep it light. But that is so hard when I want to say  'I don't know'.

We have a rough sequence of the surgeries for Chris:

The first will happen this coming Wednesday,  August 8. This is the airway dilatation and laser surgery. This is what he has had done well over 60 times. They are going to stretch out his airway. This time they are planning on keeping him overnight. Currently his is only about 10mm, ours is more like 25mm.  He struggles to breathe just doing normal things like sitting. (yes you do Chris ;-) He bought a pulse ox machine to keep an eye on his O2 levels in his blood, once after coming in from mowing the lawn it was 79. You loose brain cells in the 70's. To see it I think that was an eye opener for him.

The next will happen in late January. This is the 'one'. The one I loose sleep over. This is where he will have the bariatric sleeve surgery and they will place the trach. It is expected for him to stay in the hospital for about a week for this one.  It is just a lot to process. Our lives will change while he is trach'ed. NO way around that.

The next will be to repair his hernia. This won't happen till probably late summer 2016.

The final (if they don't do it at the hernia repair) will be to remove the trach. If they can.

Last night Chris' emotions over took him. For the first time he let himself be upset. Really upset. In 20 years I have maybe seen him cry a handful of times.  Last night he went there while we were talking after the girls were asleep.


We keep saying 6 months of hell for 60 more years.  It'll be so worth it for him to be healthy. We just feel like he has to risk SO much to get there.  The guilt that he is carrying because of that is east to see. Not that any of it is really in his control. He can't help the way he was born.

Here is some raw truth...

He doesn't sleep well.

 I haven't been sleeping well.

This past week I restarted my anti-anxiety meds.

Chris is a mess.

I asked Chris last night what he wanted me to bury him in.

The girls are a mess.

Chris told me through tears that I had to let people help me if he was gone.

I am sick with worry.

I love this man deeper then anyone could ever love another person. To loose him is something, well I can't even go there. I just can't.

We have had those talks in more detail this past week. He did give me a gift of getting the living will in order. That was a fun talk. But at least I know that I will be following his directions.

Per Lily's therapist I have been trying to the find good in every day. That is helping (so are the meds). I just need to feel as prepared as possible. Not that I will ever fully be. But all of this is so out of our control  I need to feel like I have some sort of handle on this. That is why we have had the talks we have had.

All of this has had some good.We are finding joy in the little things. Small everyday things. Like really watching the girls play. Making time for family dinners. We do laugh even with this enormous weight on us. But to say that I am not scared would be a lie.

Sunday, July 26, 2015

No Easy Way Out

I wrote this back in Feb 2015. I just couldn't press publish.  There has been some updates to this post and I plan to write again very soon.  I have to get it out of my mind.
For a long time (2 years or so, by now) we have known somethings about Chris' long-term health.  I am hoping that by finally blogging it I can let some of the stress/anxiety go.  A little back story, Chris was a premie, he was born with Subglottic Stenosis. You can read more about it here Not the MOST scientific journal, but it does give you the gist.

He was trach'ed at birth until he was seven, when he underwent a series of procedures to have a few of his ribs placed in his neck to hold open his airway. They nicked a vocal cord during and that is why his voice is diminished. Other then that it was very successful. He over his lifetime has had somewhere in the neighborhood of 70 procedures to keep his airway open.

About two years ago, while getting worked up for Gastric Bypass his ENT used very devastating terms to describe what could happen if Chris ever had surgery again. The ENT said things like living wills, discouraged unless extreme emergency, and catastrophic. He told us that in his opinion Chris' airway was much too fragile to support it. Beyond that, there were noted negative 'changes' in his airway since the last visit. We were blown out of the water. He had never been told that before.  We were sent into a tailspin for sometime. He was dropped from the RNY practice, we tried another hospital with better ENT coverage, his ENT still said no.  He saw top of top at Hopkins. No Again.

Now understand, because he has the airway he does, he can't just 'move more' it doesn't work. He cant get his heart rate up enough for his lungs to make the gas exchanges needed to loose weight. He has put weight on due to poor choices on top of that.

While all of this is going on Chris also has developed an umbilical hernia, it is large. He has had testing on it and it is fat filled. So that is good. But it has become a ticking time bomb. It is only going to take him picking up one of the littles for this thing to rip open. It is very large. I have taken on the heavy lifting, snow removal, mowing the lawn etc. He hates it. But there is not another way right now. RNY or no RNY  he MUST have this surgically repaired.

That brings us up to the now...

He has found an ENT out of UMMC that will support the surgeries (hernia and RNY) but with one HUGE string attached. He has to have a temporary trach placed. Now this might seem like a win. And in a very small way it is. There are however a shit ton of cons.... Temporary really is zero guarantee that they will be able to remove it. Ever. If temp become permanent Chris' entire quality of life will be effected. He looses his voice. there would be no more camping, no more beach days, a lot of social anxiety, he would have to carry suctioning equipment to work. This would happen with the temp one as well, but we would counting down the removal. They will have NO CLUE until it has been placed.


Going even further, the Trach just allows the surgeries to happen. The surgeries themselves carry huge risk.

I have let myself go to some dark places.
What happens if I loose him?! The girls loose him?!
I cannot bury him. I cant. My heart breaks to type those words. I cannot. I would have to move Lily's therapist in.

He is a walking wreck. Hates to talk about it. I hate to see him so sad.  We both have come to the conclusion that he needs to risk it, his body is working too hard. We are going to loose him early anyway if he does nothing.

We have had conversations lately that have been so sad. Truth be told. I didn't want to go back to work. I love being an at home Mom. He loves me being home. It works for our family.  However, he wants me to be established.  So off I go, with a smile on my face not telling my potential employer I am only interviewing because we have debt that my husband wanted paid off in case he dies. How terrible it that?! That is our truth right now. Is it sad that I want to not worry about the debt and plan a Disney trip, just in case. That this past Christmas he told me through tears that he was so afraid that this would be his last Christmas. What the HELL do you say to that?!


Of course the girls know NONE of this. They think Daddy is going to finally have the surgeries to get healthy and that is all they will know unless there is a need to bring them in. I guess all this worry and upset is for nothing because the Bypass/Hernia surgeon could still say no. But I don't think that will be the case.

He doesn't know that I cry a lot.  I worry even more. I am so scared. All of my Google searches have to do with dealing with the loss of a spouse, how do you get you kids through the loss of a parent... He knows that he must have a living will made. Who wants to do that at 36 years old?  With his family dynamic,  he knows it will be blessing to have his wishes written out for me to just follow.  I need to plan for the worst and pray hard for the best. Whatever that looks like. As far as I am concerned as long as he is still here he won.

It seems just so unfair. On so many levels.

I am so glad that I took the time to write this out. Sad as it makes me.

I just want see the future just 12 months from now and he made it through it all great.  We keep saying 6 months for 60 more years.  We can do this. He can do this. He has to.

Thursday, January 1, 2015

Lilliana Turns 9

How does that even happen?! Blink the child is 9. Wow. How? When? But here it is. In the day and age of Facebook I don't blog at all anymore. But like every birthday eve for Lily I find myself thinking of her birth mom. Which brings me here tonight. Chris and I have chosen not to search. Still don't know how I feel about that, but Chris is adamant about it. I get and understand why he worries about it, as a mother I still don't know how to feel about it. So I will leave in the we-don't-have-the-money-for-it-now-anyway world.  For now on her 9th birthday eve, I will make a list (I truly have a God given gift for it) of what I would tell 'A' if I could.

1) Lilliana is beautiful, not just a superficial beauty, but this child has a truly beautiful soul.

2) She is meant for great things. I know all parents think this, but there is something more to Lilliana.  There is a light to her.

3) She is roller coaster loving, rock climbing, jumping in with two feet fearless girl.

4) She loves you. Deeply. God knows how she longs to meet you one day. She has been talking about you very often, again. We let her talk about you however it comes. Even when it is painful for her and us to feel/hear it.

5) She knows a lot about Guatemala. She loves to do Power point presentations about it.

6)  Lily is a great big sister. She has recently become the little big sister. Something she finds pretty funny. Her little sister thinks that she hung the moon.

7) Lily struggles. I don't want to sugar coat it. It breaks my heart. Her Daddy and I chose to start an anti-anxiety medication this past November. She also goes to therapy once a week. Honestly I don't see much improvement with the medication, in fact it has made somethings worse. She has an alphabet soup of diagnoses right now. I don't know if it has anything to do with her adoption, or if the doctors are right and she is just 'hard wired' this way. Please know that her Daddy and I are doing everything we can to help her. We would walk to the end of the Earth for this child.

8) She has an operation coming up very soon. She has problems draining her ears so the ENT wants to put tubes in her ears and also take out her adenoids. It will sometime in the early new year.

9) Lilliana is a very loved little girl. By us, her Grandparents, GG's, Aunt's, Uncle's, cousins. She and her sister just light up entire our world.

10)  She has a wonderful laugh. When she laughs she makes all of us crack up just laughing at her laughing.

11) She has started playing the violin this year at school. She is really seeming to like it. She just had her first winter concert and did a fantastic job.

12) Tomorrow for the first time ever she is going to go ice skating! We told her today and she is thrilled!

I could really go on and on, hopefully one day I will be able to sit with you and tell you in person how incredible our daughter is. From the very bottom of my heart thank you, for trusting in us to parent this amazing child.