We're back in Loma Linda hospital

You've been miserable and so lethargic. I kept telling myself that maybe you just needed more time to get better after all you did just have major surgery. You were either asleep, or crying, or crying while asleep, and your mouth was constantly dry and flaky.

I didn't want to be one of those mothers that freak over nothing but I just felt like something wasn't right.

I told Dad this morning that I missed you. I felt like I haven't seen you since Friday morning.

I had read how the medicine your were on for your heart, Inderol, could make you sleepy and I knew the diuretic your are on could dehydrate you so I made an appointment to see Dr Kwasman, your pediatrician.

After thinking about it I realized that Dr. Kwasman wouldn't be able to change any of your medication without speaking to Dr Bailey so figured I might as well try and get you to see him instead.

I called the heart center and described your symptoms and they asked us to bring you in as soon as possible.

Another call to Aunt JJ to rescue us and watch Pierce and Dad and I were off to Loma Linda.

At the heart center they were reviewing all you symptoms and trying to think of what could be responsible for you feeling so bad. I opened you shirt to show them how you were breathing and when they got one look at your incision and next thing you know you were getting admitted.

I had seen a little bit of redness around your incision site and was planning on showing it to Dr Kwasman but I honestly don't know how it got so bad.

It took 7 tries to get your IV started. The truth is you were feeling so bad you hardly noticed. The plan is for you to get a PICC line since you will be on antibiotics for a while. When they took your temperature it was 101.3.

After being on the IV for only and hour you were already feeling so much better. You were awake and looking around and started sucking on your wash cloth again. They also held your Lasix and I think that had a lot to do with you feeling better.

For a while you were even playing with the red light from the pulse Ox on your toe. It brought tears to my eyes. It's the first time I have seen even a glimpse of you since Friday before your surgery.

The Dr said they will have to open up your incision and drain it. Boy I am not looking forward to that.

You are for now fast asleep. The first restful sleep you've had in a while

I'm at your bedside till 2 when your Dad will take over and stay so I can get a few hours of sleep and be back at your bedside before the Dr's start coming in tomorrow.

I'm so glad I finally listened to my instinct and brought you in. I'm just mad at myself that I didn't do something sooner.

The Dr said we will be here for at least 48 hrs. As much as I don't want to be back here I'm just looking forward to you finally starting to feel better.

I hate Apria!

Yep that's the title of my post and I mean it. I really hate them (they are a medical supply company if your not a member of a medical needs family).

But more on that later.

First to get caught up on yesterday.


Dad got your walking papers before I even got there and with a couple of test, and some paperwork we were out of there and home by 11:30.


Your nurse Nichole whom we loved (and Cory too but she wasn't there for our picture)

One last EKG

Your scar. Right where the old one was.

Freedom!!

Well the full night of good sleep we were all hoping for so didn't happen. We went to be early but your pulse ox machine kept going off keep me awake. You were also very congested and coughing. I tried everything I could think of to try and help you breath better but what you really needed was some deep suctioning. I didn't have any catheters since you have never needed such deep suctioning before so we just had to make do.

It wasn't till around 4 am when I got your cough under control and finally a couple hours of sleep before we started again in the morning.

You seemed to be doing better but around 11 am you started needing deep suction again so I called Apria, the company that supplies your respiratory needs, to get some of the suction catheters.

To make a really long story short, four and a half hours, 8 phone calls, at least 15 transfers later (where I had to repeat your name, our address, your birth date, and insurance information EVERY TIME they transferred me only to transfer me again), and finally me crying and yelling, Aunt JJ went to the supply center and was able to get the catheters we needed.

One deep suction later and you were so much more comfortable. You let out a deep sigh and fell right to a deep restful sleep for the first time today.

So now I hate Apria for making you suffer all day for something that shouldn't have taken more than an hour to get.

I want it in my obituary.

Amy Lozano mother to Pierce and Mason, wife to George, drank too much Diet Coke, hated Apria.

We have the suction all set up and are hoping that now that we can suction you as needed we can all get some much needed sleep.

Once again I owe a big thank you to my sister Jennifer who was here all day and more help than any one person should have to be.

I know I couldn't!

Also a really big THANK YOU to sweet Erin our neighbor who brought us dinner again. Not only is everything she brought supper yummy and perfect for a picky person like me but it really was the perfect day bone tired day to not have to think about dinner.

So thanks again Erin, can't wait to return the favor when baby Wood comes!!

and for my fellow Pinterest addicts.

Look what George did for me in his twenty minuets of free time he had today. We still need to put on the labels and fill the extra holes but how awesome is this?

Home

and settling in.

Nobody and nothing between us and life is good.

Your just about miserable. Every time you cough your poor face screws up and you start crying your so uncomfortable. Your incision looks wonderful but the bruises are dark and angry looking. It's gotta hurt like crazy.

According to the Dr's Tylenol is more than enough to control your pain. What a bunch of B.S.

Dad and I are pretty busy just trying to keep you comfortable and we are hoping for a good night.

The camera is out in the car and honestly I'm too tired to go out and get it so I will post pics later.

we're going to Disneyland!!!!

We got our walking papers and should be out the door in an hour or so!!

We will update asap!


Thanks again for all the love and support!!

Everyone is well, everyone is tired

We've had a long mostly uneventful day.

You know how you wake up the first day after surgery and think...this isn't so bad! And then you wake up the second day and think....oh my I feel like crud!

Yeah, that's what you feel like today. Your not bad, just not feeling great. You have a lot of secretions and need to be deep suctions once every few hours.

Your down to 3/4 liter of oxygen and doing good but your oxygen level will fall if we try and turn it off. You'll get there in a day or two I'm sure.

Your up to full feeds and have had many big poops so your feeling a lot better that way.

So we found out last night that Dad could sleep by your bedside so we thought perfect! Dad will sleep with you and I will sleep at home. Then I will come in the morning (well rested) and Dad will go home and sleep.


Well the chair, though fairly nice, wasn't really made for a tall person like Dad and I was a little freaked sleeping in the house by myself so neither of us got any sleep.

I came at 5:30 and took over for Dad. Then he came back at 2:30 and I went home and slept. We both had dinner together and now I'm at your bedside settled in for the night.

If you stay asleep I will leave around 12 a.m. and Dad and I will get some sleep but if your restless then Dad will come at 12 and stay till morning.

The best part of our day was we got to meet a fellow local CHARGE'r Abraham in the next room to us. It was like meeting a cousin we didn't even know we had!! The live just a town away from us too. I'm so excited to have met them. I can't wait till both boys are well and we can get to know Abraham outside the hospital.

I was really hoping that we could get discharged home today but once I saw you I knew we needed to stay at least one more day.


It's looking like 90% positive we will get to go home tomorrow and it's a good thing!!

Look what your brother's up too!!


p.s. the night nurse last night told Dad that he had heard his wife (me) was tenacious. I really have no idea how I keep getting this reputation? hehe

Update: Your sleeping. I mean REALLY sleeping. You didn't wake up when I turned you, suctioned you, held you, nothing. Your out.

It doesn't make sense for Dad and I to sit exhausted by your bedside only to watch you sleep so after making your nurse promise to call me if you wake I've gone home to get some sleep.

Dad will be back by your side at 5:30 am to be there when you wake.

As I was leaving the unit I walked by a room with tons of alarms going off, medical staff hurrying here and there, and crying family members and my heart just sank.

I'm so very grateful for your health but I just can't wrap my mind around all this loss.

Ruxson, Adam, Justice, Andrew, Tyler and so many more. It's all too much.

I made it too the parking lot before I lost it and ended up crying all the way home.

I sent out a prayer to that little angel and his or her family.

Update from Dad

I took over for your mom at 6:30 tonight. On my shift we have made progress.

First we moved to a new room number seven. We have a recliner now!!!! Daddy can spend the night and as of 10 PM you are on 2 litters of oxygen through a nasal cannula. We removed an A-line from your groin. Two more checks on your list to go home.


At midnight we will start your feeding and by 3 AM we will hopefully pull your drainage tube. maybe home by Monday!!!!!


We also watched football on tv. Arizona should of won that game. You agreed with me. for now you are chewing whatever you can reach but hopefully you will sleep soon.


Your Mom was in form today. Not only are we now staying by your bed side but I was brought a chair. Right now i have a pillow and blanket just waiting for you to be feed before i go to sleep.

-Dad

All is quite and going well

I've spent the afternoon with you. You've been sleeping on and off and catching up on your sleep. When your awake you've been crying and unhappy. Right now your obsessed with sucking on a damp rag. At first I just assumed that maybe your throat was sore from the tubes but I finally realized your hungry. Starving actually. It never occurred to me because you've been tube fed continuously pretty much since birth and have never known was it is to be hungry.

They started you on a small amount of Pedialyte. As long as you tolerate it well they will increase it up every hour and should have you back on your formula by tonight.

We've been weaning you off the oxygen. You now only on 4 liters and should go down to 2 liters in just a little bit. I'm not sure if you will be able to go back to room air tonight but we should get you pretty close.

Your blood pressure is still high even on medications so it doesn't look like we will be able to go home tomorrow. Maybe either late tomorrow night or Monday morning (most likely) either way your are doing and looking so well your Dad and I just don't know what to do with ourselves.


Cousin Lauren and cousin Whitney came for a visit. You were happy to see them but mostly you just wanted to suck on your towel.

We are so close to home baby. It almost seems too good to be true.

I want to say thank you so much to everyone for all the support, prayers, comments, and good wishes. George and I can't help but feel like you've been a big part of Mason doing so well and getting us so much closer to home.

We appreciate each and everyone of you so much. I know I've said it before but it feels so much better to know we aren't alone.

Go Team Mason!!

Oh happy day!!!

We extubated and doing great!!

Such a different experience from all of our extubations before. Right now he's on high flow and doing great. They will titrate down the oxygen every two hours and who knows we might even be back on room air by tonight.

Dad and I are taking turns at your bedside trying to keep you from pulling on your tubes so they don't have to use restraints on you. Right now your really enjoying chewing on a damp towel.

FYI - they tried to get me to leave when they extubated him. I refused. I said to them that I was there for every intubation and extubation so far and the reason why I was able to give them so much information about his history is BECAUSE I was there at the bedside for all of it. I argued that all the latest research said that making the family part of the health care process was beneficial to the patient and that their policies were antiquated and unreasonable.

The Dr then said she agreed with everything I was saying and that they were trying to get the policies changed.

I said great you can start with me.

So I stayed.

Daddy is taking the first watch. He has strict instructions not to leave your bedside if they try and make him.

I'm going to get some rest and be back this afternoon.

p.s. Dad just sent me a text that they got him a chair. :)

Not going to get extubated tonight...

So we waited all afternoon for the ENT to come and extubate Mason. Finally around 9 pm the ENT fellow called and said they didn't need to be there to extubate him.

They just said if he needed to be re-intubated to do it with a 2.5 ET tube and to have anesthesia do it and then they would do a bronchoscopy on Monday.

So the unit hears this and figures they don't want to deal with a kid going bad in the middle of the night so they would just wait till morning to extubate him.

Perfect ((insert sarcasm here))

So I insisted if they weren't going to extubate him they needed to sedate him. The resident tried to argue that morphine was enough but just then Mason started waking up, holding his breath, and turning blue.

So I got the sedation.

I stayed till Mason was good and snowed on drugs. George and I are back home. Going to go to sleep early and get back early in the morning before anything happens.

p.s. I was in the room for two hours. Nobody even tried to get me to leave. I'm thinking my nurse may have been warned. :)

Another one down

Mason,

It was a late night and a really early morning. We loaded you and Moms Diet Coke and we were off. A little scared and a little sad. After all you are not even a year old and already your second heart surgery.

You were kicking and smiling at 6 AM like only a little boy can, the nurses were trying to get your attention and you were just paying hard to get. I was looking at you in that big bed and remembering our CHLA day's.

I could not help but to think of how big you are how stubborned you have gotten, or you have always been, after all you made it through 2 months that would have brought most grown men to tears.

Stubborn comes in real handy when you are recovering from an operation. A part of me remembers this and thinks you will be just fine. Another still thinks that you are so small and fragile how could you possibly handle all this? But then I remember that you are stubborned and determined to do things your way.

Like when you deiced that you want some attention, you do not make a lot of noise but you will squirm kick and turn until someone comes over. Sorry i am rambling.

Your were taken into surgery and your Mon and I went to wait at the cafeteria. Hospital food, you will love it.....

So we waited and remembered where we have been and where we are now. We were finally paged and a good thing after having my third bag of Flaming Hot Cheetos I may need a future medical procedure. You are gong to love these things, Pierce does.

So the nurse at the check in station asked who we were here for and we said "Lozano" the nurse jumped right up and took us to a small room that was marked patient conference. I looked at your Mom and asked is this the type of room they bring you to tell you there was a problem? Then Mom and I spent the next 20 minutes thinking of what if's. Turns out they put us there because they wheeled you right by that room to get to your bed.

Daddy feels dumb. Everything is OK. When I first saw you with the tubes and wires my heart sank a little bit but when you opened your eyes and looked at me like you wanted to grab my glasses and suck on them. I then knew you were going to be OK.

Night is falling and we are waiting for word that we are going to take the tube out of your throat. Your Mom and I are waiting for the ENT so we can see if you breath on your own.

We do have a deal if you breath on the first try and you get a fabulous tree house that connects to the pirate ship, if that does not work for you, on the second and you get a slight smaller tree house with a zip line to the pirate ship. Third time and you get the tree house and I only give you and Pierce two soup cans and a rope. I think the first is the best choice.

You know your Mom will make me build all three. So take your time and recover. You, Pierce, Mom and I have a lot of building to do, so let go home. I love you Mason.

-Dad

It's Jelly time!

We finally got to go in an see him around 2 pm. We could see everyone running back and forth working on things for him. You had to know Mason wasn't going to take it easy on them.

His blood pressure is a little high but they are treating him with meds and expect him to respon to them soon.

His main issue is his airway as always. They want to extubate him asap but they want his ENT Dr there when they do it and nobody knows when the Dr will get there.


He's really fighting the tube and so far the pain meds aren't enough to keep him comfortable. They are walking a fine line between giving him enough pain meds to make him pain free and not giving too much to so he's too sleepy to get off the breathing machine. As hard as it is to see him suffer
in the long run it will be so much better to get him off sooner rather than later.




I've told them I don't want them to make any decisions about extubating him without me there and they have agreed to have us at the beside to speak with the Dr before anything is changed.

When we got to the room the nurse, who is very nice, gave us the 5 minuet only visit speech. I told her that was not OK with us. She tried to tell me that she might be able to let us stay longer once he extubated and I asked to explain to me how I was interfering with the machines in any way.

She didn't have any answer except that it was their policy. I told her I thought the policy was ridiculous.

We stayed an hour.

Then they got an admit and then we gladly stepped out.

While we were there I answered 20 or so different questions about Mason's anatomy, history, reactions, etc. All which the nurse admitted they needed to know and made their job of taking care of Mason so much easier and a positive outcome so much more likely.

But they don't want me at his bedside. Make any sense to you?

Me either.

George and I have discussed it and while we are going to try and keep an open mind and see how it goes if the visiting policy stays as restrictive as they say they are going to make it we will not be bringing Mason back here for anything other than minor treatment.

Why would I want to bring my child to a place that wants to keep me away from my child.

Why would anyone?

It's so hard to see him in pain and not be with him, but to be near him, to know that we are so much closer to getting him home and to a normal life span.

What else really matters?

He's in recovery!!!

He's in recovery now! We got to see him for a second as the wheeled him by.

He's still intubated. The nurse told us that the surgery went really well but he has some airway issues. We don't know if they found something new or if it's still the larynogmalicia. We are waiting on the Dr's to come and tell us how everything went.

They put us in a little conference room to wait for him to come by. It totally reminded me of the little room we put our families in when we had bad news to tell them. At QVC we called it the crying room. I almost passed out and threw up waiting to see him. I know know the feeling of having your heart in your throat.

I had a PB&J for lunch. I thought it was fitting (that and I guess seventh day don't eat meat so I didn't have much else to choose from)

....OK just spoke to the Dr's heart went like gang busters not much to worry about there. His airway is even more narrow then they thought. The Dr's are in conference now to see what the plan for his airway will be.

Surgery update..

proceeding as expected. He's on bypass.

FYI - Loma Linda gives out these pagers that they update at least every two hours so you can know how your child is doing. Gotta give LL an A+ for this one.

He's in surgery

If you can't read it says..surgery started at 8:49 all lines are in and doing well.

Now it's hurry up and wait.

Surgery day part 1

So were all checked in and they have taken you back. Dad and I are in the cafeteria with our hospital pager and should get an update in an hour or so that they are starting surgery.

I feel like my soul is outside my body floating somewhere in this hospital, maybe near you, and that I wont be complete again till we are back together.

Since August 2010 when you were first diagnosed with the CHD at 28 weeks into the pregnancy it's just been a series of hard blows. With each one I keep thinking..this is the hardest thing I have ever had to do/go through and then then next thing happens and I think...no THIS is the hardest thing ever.

Today as we kissed you goodbye and handed you over to the surgery team was the hardest of all the hard moments yet. On the outside I may have looked calm, though I did start crying a little bit, on the inside I felt like screaming NO.

Seconds have never felt so heavy.

Aren't you adorable!

They tell us the surgery may take as long as 6 hrs. I will update the blog as they update me.

Send your prayers out on swift wings so the can fly and be with my baby when we cannot.

The bitter and the sweet

Just a quick post. I'm beyond exhausted and want to spend the day with Pierce tomorrow before he goes to stay at my sister's while Mason is in the hospital.

Our pre-op day started at 9:15 and didn't end till around 3:30.

First a stop at financial, then a long wait, then a visit with the nurse, another long wait, the nurse practitioner, then wait, a meeting with the surgery nurse coordinator, the a tour of the ICU, an X-ray, and finally we got to go home.

They thought the might have seen a little atelectasis (collapsed air pockets in the lung) but your X-ray ended up being normal.

The sweet.

Your the first case of the day so we will get there at 6:00 am and then your surgery very soon after.

Other children, who don't have problems other than the heart defect, have gone home as soon as 24 hrs after surgery! With your respiratory issues, if everything goes really well and they are able to extubate you right away they are thinking letting you go home as soon as Monday.

Don't you look excited

Stop taking pictures mom!

Of course if you don't do well and can't get extubated... well then we are in for a much longer stay.

Your bigger, and stronger, and have had months to recover from your throat surgery and so we are hoping for the best.
The bitter...

As I was going over the hospitals routine and policies with the surgery nurse coordinator she informed me that our visitation time with you, at least for the first day or so, would be very limited. That they would let us see you for only a few minuets at a time and then we would have to leave and come back after a time period.

Yeah, um I don't think so. Not gonna happen. Not in this life time. Not ever.






I told her to go ahead and open your chart and write down that I was going to have a problem with that, and that while I understand having to step out for procedures, shift change, reports, and for other families privacy, but otherwise I would not be separated from my son.


Period.


She went on to explain that since you are having open heart surgery that your treatment would be very complicated. I reminded her that you have already had open heart surgery, and a much more complicated surgery than this one, and not only did CHLA welcome us at your bedside, but encouraged us to be there.




She then went on to say that they would be doing your recovery at the bedside and that would take hours. I told her they did your recovery at the bedside in CHLA and we were able to be at your bedside about an hour and a half after your surgery. And again, that surgery was much more complicated than this one.



She then went on to say well maybe they would only limit our visit while you were on the breathing machine. I explained to her that I have worked with vent's for over 10 years and a families presence at the beside has never prevented the machine from properly ventilating a patient and that wasn't a valid reason to keep us from being with you.






She then asked me what kinda of a nurse I was. I told her critical care, and as a matter of fact, I often recover open heart surgery patients (though adults not children). I also told her in my 10 years I have never kept my families away from there loved ones.


EVER!


She then told me that she was sure the nurses would work with me to come up with a situation that we were both happy with.



I told her I would be at your bedside at all times except for shift change, shift report, procedures, and for other familes privacy.




I think she may have sighed very deeply. I almost feel sorry for her. Almost.




I did get to meet some of the nurses that would be taking care of you. They all seemed nice and mellow. I also saw several parents at the bedside so I'm not going to let myself get worked up over something that will probably not even be a problem.


But just let them try and and keep me from you


this momma is gonna roar!

Yeah, you think it's a bunch of B.S. too.

A letter to Mason

Dear Mason,

In December I started this blog with a letter filled with my fears and hopes for you. So much was unknown then. So many unanswered questions. I was ready to get going and face our future and just know. But at the same time I just wanted to stay where we were with you tucked safe inside me.

So much has happened since then.

So much has changed.

You have gone through so much.

We have gone through so much.

We've learned, and experienced, and grown, and fought, and won, and we have become a family.

On the 26th we will be bringing you to Loma Linda hospital for open heart surgery to give you a chance at life.


Part of me is ready to just get going and get the unknown over with the rest me wants to take you a run as far away as I can and keep you safe tucked up against me.

It feels like we are right back where we started last December.

Like our own version of "Groundhog Day" only without Bill Murry or quite so many punch lines (and a whole lot more Dr appointments!). But, we hope, with our own happy ending.

Even though it seems terrible to even write this it's so much worse now then it was back in then.

Then you where an idea, a few quick movements, fuzzy black and white image on 100's of ultra sounds, with a name and a beating heart but you weren't you. Not yet.

But now

You are you.

With your big deep dark chocolate brown eyes that already seem wise beyond your months. That crooked smile that radiates joy and makes all who come anywhere near it unable to resist falling in love with you. Your will. Your stubbornness (just like your Mama!). The way you already look at your brother like he's a superhero and the way your whole body dances with glee at the simplest of things.

And you, globally developmentally delayed you, in a room full of people all bustling around, poking at you, testing you, a mass of confusion and movement.

You look around taking each person in turn, till you come to me. Then you stop. Although you do not reach, you can not speak, you can not hear, and we are not even sure how well you can see. You stop, and the look on your face changes, and everyone sees that you recognized me. That you know I'm your Mama.

Of all the people there I'm the one you focus on and everyone in the room gives out an soft uncontrollable "awwwwww" and look back and forth between us and the love they see there.

It's so much worse now. The thought of losing you.

I have constant heartburn just thinking about it.

Not the kinda heartburn that you can treat with Tums. Not the kind that travels up your esophagus with spicy foods.

No this kind of heartburn is this constant ache and pressure on the heart. It fluctuates as thoughts pass. Sometimes the pain so intense it about bends you over and your heart literally burns, sometimes just a constant low heat.

I tried to explain the pain to your Dad once but it turns out I didn't have to. He already knew.

He's been feeling the same pain for a while now.

The other night I had just given you a bath and you were laying there all shiny and sweet. You were giggling in your breathless way as I blew raspberries on your belly and I as I looked at you I thought simply I can not do without you.

and I can't Mason.

In just three days we will be handing you over to a man who will have your heart literally in his hands. He will open your chest, and stop your heart, and try to save your life.

And once again your Dad and I will have one thought

One wish

One prayer

One hope

Just two words

Come home

That's it baby. That's all I ask.

Please just come home.

We can not do without you.

I can not do without you.

Tomorrow we will go to Loma Linda for your pre-op appointments. I think we will find out what time your surgery will be. I will update the blog tomorrow with any information I find out.

Till then my very talented, and lovely, friend Becki from Becki Cloud photography moved heaven and earth to do a family photo session for us the other week. I couldn't love them more, or be more grateful to her for the gift of these photos.