Post Pattys Day

Life seems to never slow down. 

Lanie:

School is constant (of course). She may only be there 3 1/2 hours for Kindegarten but after she gets home, we spend alot of time doing homework, reading school books and practicing other skills. Shes doing very well and loves that she can depend on time being spent concentrating 100% on her. I enjoy listening to her read books so much that we get books from her book shelf to read for fun and practice. I am amazed at how fast she has learned and how well she is doing. Her report card are awesome. This last one was all 3's (basic advanced) and 4's (above grade level/advanced). On St Patrick's Day she kept telling us how a Lepracauhn got into their classroom and left foot prints all over the tables. All the kids laughed about it ever since. When she came home that day she came outta her room and said "Yep that naughty Lepracauhn messed up my bed". I laughed so hard. She had actually just forgot to make her bed that morning.

Speaking of St Patty's day, Lanie and Liam helped me make a cake to celebrate. It was Liam's first time ever helping to bake. We made a green cake with chocolate chips. Liam threw in several chocolate chips all by himself. He was so proud of himself. For dinner I made chicken, mashed potatoes, bread and alfredo. I colored the alfredo green. The kids got a kick outta that. 

Liam:

He's been doing good since his discharge early this month.

As of two night ago he's finally tolerating full night feeds of 80mls per hour.

He hasn't used anti nausia meds in 2 days either.

It just takes Liam a long time to get back to himself after being sick.

Miraculously he hasn't seemed to have lost ANY weight this round!

However he is still dealing with constipation pretty bad.

Last 3 nights he's gotten mirilax every night.

He's been waking up crying in pain from it.

He will continue his mirilax regimen for as long as we can forsee.

Doctors just don't want him to get backed up again.

Liam outgrew his braces and we have to start the process of getting new ones.

If all goes well then insurance will pay for this set.

We're praying so because the new ones they want him to get are even more expensive than the last pair.

Liam currently has a stoma (area around his Gtube) infection and is on antibiotics for that.

Poor boy just can't catch a break sometimes.

Liam is trying to talk alot more.

It's not always clear even to us but he's making an effort.

Sometimes he tried to tell us something and we just don't understand.

Thats very frustrating for everyone.

Liam is getting taller but he's going so slowly that he still fits into last years spring/summer clothes.

That good news for our bank account at least.

GI is just trying to get Liam up into the 10th/15th percentile for size and weight and he's going to stop pushing he says. He is considering now that Liam just may be small no matter what we do. No matter how much calories we literally pump into him. 

I see Liam take all his tube feeds and then eat the whole house by mouth almost every day and he isn't gaining. I am leaning towards the fact that he will be small like I was when I was little no matter what.

BUT...

Then theres the theory that if we do the right repair that Liam's right lung won't have to work so hard,

won't use so many calories, and will just take off growing like a weed after.

That's something we just can't deny as a possibility. 

Which is why we're waiting to see his surgeon at Children's.

Every other one of Liam's specialist and doctors says it's time, but the last call is up to Dr Jones.

The plan is also to repair his hiatal hernia at the same time and take out his mediport.

This surgery will be riskier than the others,

even his first repair.

Why?

Because Liam has a ton of scar tissue now and to do these surgeries it requires that Liam's chest cavity be opened up. No lapriscoptic surgery can be done this time around.

As a mother who was alone in the parent's kitchen on the 15th floor of UCSF for Liam's last repair but we were told last minute he was having and his daddy and grandma couldn't make it there until after Liam was out and stabalized, I am feeling it all over again.

Anxiety.

Fear.

I am so scared to have to go through this again.

I am so scared that he has to go through this again.

You never want to see your child suffer and it seems most of Liam's life has been suffering and painful.

If you were to see him,

talk to him,

play with him,

you would never know it.

Liam has more strength than anyone I have ever met.

He is an inspiration.

My super hero.

Me:

I've been having my own medical problems. I haven't shared in detail really whats been going on.

I have cyst on my ovaries.

I've been in pain since January.

In februrary I was in so much pain I took  myself to ER.

Thats where they found the cyst.

After following up with a GYNO a few days later,

we've been trying to get this figured out.

They put me on a birth control because the hormone was supposed to get rid of the cyst.

Pain meds of any kind weren't helping at all.

During the second month on those pills,

I bleed the entire month.

It was miserable.

I had no energy.

I went back last week and they switched the BC to a different kind.

Thankfully the bleeding has stopped as of 2 days ago.

I still have pain but some hours are better than others.

I'm waiting on a call to go have an ultrasound done to see if they've shrunk.

They believe the type I have is the kind that grow and grow until they pop then start regrowing again.

This means that even though I had my tubes tied Ill have to stay on BC.

It also means that the pain isn't going to ever completely go away.

As long as it doesn't get as bad as it did I think I can live lol.

They found out last week that I have a bladder infection too.

I'm at the tail end of the antibiotics and glad to be almost over it.

And I'm anemic from bleeding so much.

Yea I asked them to test to be sure because that was alot of bleeding.

I had been dizzy with no energy what so ever.

Now I'm on iron pills and am starting to see the symptoms get better.

Not perfect but  BETTER!

Better is ALWAYS good in my book.

I hate dealing with my own medical problems and have been prone to put them off until they can't be put off any longer.

I figure I've got my hands full with Liam and no time for me.

BUT I know better.

If I don't take care of myself,

I won't be able to take care of Little Lamb,

or Lanie Bug.

I feel like even though we have the dark cloud (liams pending surgery) hanging over our heads that things are good. That we can get through this like we've gotten through the last 2 years and 8 months:

With Love and faith.

Coping

WebMD describes depression as intense feelings of sadness, and other symptoms like loosing interest in things you enjoy. WebMD has a great tool to help.

 I'm currently battling the worst of my depression and PTSD. This is my third round of meds trying to treat the depression and PTSD. The side effects were always so bad I just couldn't stay with the meds but WebMD says to stick with the meds, that it could take months to help. They also say to talk to your doctor because you could need a different dose.

WebMD says excersize can help. Thats great and all but I cant find the energy to do so, or the will to push myself.

This last few weeks have been so stressful, especially this last week that yesterday I was maxed. I was so stressed out over Liam feeding supplies still not being here that I shut down. One minute I'm sweeping the kitchen and the next I'm crying and cant stop. It was hard to breathe. I was taking these gulps of air as if I was a fish stranded on dry land. It took me 10 min to pull myself together and calm down. After that I just emotionally shut down. Even today I'm shut down. I'm exhausted and all I want to do is sleep (another sign of depression). I think another factor is my PTSD here. As I'm fighting for Liam's feeding supplies all I could think of was if I don't get his shipment he's going to end up back in the hospital for weight loss, breathing issues and they'll hold him until we get his delivery and he starts gaining weight. All those hospital stays kept running through my head. Seeing Liam behind those metal crib bars, the beeping, cold uncomfortable pull out beds. I felt cold down to my bones and Liams sad face kept showing in my head.

At that point I started crying. I felt like I couldn't keep doing this. Like I had nothing left in me to continue a life of this. And of course that made it worse because its my responsibility to care for Liam. Mine. He should never have to see his mother break down like that and neither should Lanie. I never want Liam to feel that this is all his fault, because he did nothing wrong. That was my last straw, the exact moment when I said no more and refused to wait any longer to begin treatment. I re-starting taking my Paxil and made an appointment with a doctor to make sure I should stay on this med as well as deal with my other medical issues.

I feel resigned to the situation. I have no choice. Things have to change. I'm so angry all the time over everything. I'm angry at every day things as well as everything from Liam being born with CDH and my painful pregnancy. I started having flash backs again and nightmares. So far they haven't been too bad compared to what I've had before.

My life has been one bad card after another since the day I was born, or probably even conceived. Its a very long story that I still don't want care to get into. I was so angry yesterday questioning how bad things could continue to happen to good people. Why on earth I keep getting the short straw when all I do is give and help people. So would the theory be that if I stop caring for others that good things would then happen to me? I highly doubt it. Besides my heart isn't wired to not care for others. I honestly believe its a fault. I will give and give until I have nothing left. This blog post is the last thing I have to give right now, in hopes that maybe somehow something I wrote here today will help someone else.

Yes I had a bit of a breakdown yesterday,

But today I'm still breathing.

Still here to tell my story,

Take care of my kids.

I think that says a lot.

Sometimes you just to let it go,

let it go,

shut down,

and start all over again tomarrow.

I'm taking life one step at a time right now. 

Today I will NOT care about tomarrow.

I will find something today that can make me smile,

make me feel good,

even if only for a few minutes.

Liam is 2 years and 8 months old now. Some days it feels like we were just in NICU yesterday. Every time Liam has a hospital stay I have to start all over in coping with everything. This last break between hospital stays was 8 months. Before that the longest was 8 weeks. It takes work, doesn't go away over night.

March 1st 2014

Tuesday February 25th Liam was admitted to children's hospital for fever and vomiting. Turns out he was constipated to the point it was backed up. The docs said it was probably caused by the virus and they've seen this frequently. The fact that Liam runs on the side of constipation normally did not help the situation at all. 

In ER Liam won over all the nurses. It took 3 tries and a nurse from the cancer ward  to get his extremely wiggly mediport to behave. It broke the nurses hearts to see Liam so upset. One of them tracked down a stuffed puppy and bubbles for him. He went for chest X-rays and won the X-ray tech over and was rewarded with stickers. 

Since we made it to the floor in a room we've have seen many staff members that have been taking care of he was only 3 months old. Everyone sees his name on their charts and immediately recognizes the name and remembers him and his medical history. It makes the stays easier knowing that he's in great hands. BUT it also reminds me that the reason he gets a "homecoming" here is because he's been here so often in his short 2 1/2 years. 

This was the first hospital admittance or ER visit Liam has had in 8 months. I'm extremely greatfull for that.