Perfect

I've become a suspicious old lady and so I didn't prepare in any way for us to come home today.

Didn't really pack (still packed from weeks ago).

Didn't buy cookies for the nurses.

Didn't post on the blog.

Nothing.

I wasn't going to do anything to jinx our chances of coming home.

But home we are.

With a chest full of sutures that needs cleaning three times a day.

A pic line with three different IV antibiotics that we have to give three times a day for an hour each (9 hours worth).

11 new meds that we give several times a day each.

Three new supplements for your feedings.

Blood draws once a week.

PICC line changes once a week (unless I get it wet like I did today...oops!)

Visits to the surgeon, the cardiologist, the ENT, the infection disease Dr, and your pediatrician.

Not to mention that we are due for your three month follow ups with all your other specialist. GI, cranial facial, endocrinologist, neurologist, opthamologist, pulmonologist and .....

We need to get going on your hearing aids.

And re-start your physical therapy.

It goes on and on and on

and you know what?



It couldn't be more perfect.

Because we are home.

We are a family of four again.

You are going to get better and better.

and life is pretty damn good.

No I take that back

Life is pretty damn great.

WE ARE HOME!!!!

Isn't that just perfect?

Just breath

Sorry for the lack of post lately. We've been on vacation.

Well not really but we did get away from the hospital for a bit.

On Monday I took Pierce to Disneyland for the day while Daddy sat with you then I came and sat with you after shift change till around 10:30 at night.

We had so much fun I deiced to ask cousin Whitney if she could stay with you on Tuesday so Daddy, Pierce, and I could spend the day together at Disneyland.

Cousin Whitney was the best-est cousin ever and stayed with you the whole day from morning till around 11 at night so we could even spend the night there and play all day.

Thanks cousin Whitney!


We missed you every second we were there but it was so nice to get out of the hospital and breath some fresh air and soak in the sun for a bit (even if I did burn my scalp). It was the first time Daddy and I got to spend more than a few minuets together since you went into the hospital for your first surgery.

Don't tell him but I've missed him.

You are doing pretty well. Your feeling really good which is the best thing of all. Your playing, cooing, making spit bubbles (your new favorite pastime) and generally just being your charming self.

At first they told us you would be able to go home Wednesday or if not Thursday for sure.

When I came in Wednesday morning they were concerned about a small amount of redness they saw on your incision and wanted us to stay till Friday just to be safe.

This morning they brought up the idea of either sending you home Friday and you would be sent home on 3 IV antibiotics that I will be giving you around the clock and we would have to come back once a day M-F for about 3.5 hrs for your oxygen treatments x 6 days plus visit the heart clinic to have your wound monitored once a week.

or

Stay till Monday morning. Get all your oxygen treatments done as an inpatient (since they do them twice a day M-Sun as an inpatient) and go home Monday afternoon with the antibiotics and coming back only once a week for the wound follow up.

As much as I want to grab you and run from this place it only makes sense to stick it out a few more days and get these treatments done so we can have some semblance of a normal life.

They are going to send us home with an IV pump (and the only reason why they are going to is because I'm a nurse and they know I can do your IV's the same as they could) and we will be giving two of your antibiotics three times a day and the other one once a day.

For 3 to 6 weeks

I keep telling myself to just breath and to not get overwhelmed.

It never ends up being a hard as it seems it's going to be.

Just breath.

Whatever it takes to get you home.

Scars

My head looks at your chest and is grateful.

I know that if this is what it takes to keep your chest wall together and give it time to heal than this is what it take. The picture just doesn't do justice to how bad you chest really looks.

My heart is sicken.

I feel nauseous looking at it.

My baby should just get to be a baby. He shouldn't have this life where pain is just expected and his chest looks like Sylvester Stallone has been using it for a punching bag and then some mad scientist did a crazy hack job stitching it up.

We've started referring to your chest as Frankin-chest like we refer to you Aunt JJ's knee as Frankin-knee.

They tell us we will be able to get plastic surgery later to improve the look of it.

Great another surgery.

There is not much to report really. Your vital signs have remained stable and your white count is down so for now it's all about pain control and watching and waiting to see what happens.

I find myself starting intently at your scar trying to see if I see any signs of redness like we did last time.

See if there are any signs of infection

Sometimes I have to shake myself and tell myself stop looking for unwanted trouble.

But before very long I'm back at your side looking

I think this latest hospitalization has left both with scars.

A comment on comments

I have heard from several of you that you are having trouble leaving comments on the blog. It makes me sad to think we have missed out on hearing from some of you because of this.

I too have had problems leaving comments on other blogs mostly Andi Bean's blog (if Andi's mom is reading this I have been desperately trying to leave comments on your blog to no avail. I so want to send my support to you and my heart is breaking that Andi is going through so much to get that damn leak taken care of) and on Nikolas's blog but at least there I am able to comment as anonymous.

After doing some research I have found that this is a wide spread problem and blogger isn't really doing anything to fix it. I tried to find a way around it but so far the best I could come up with is too add the choice to post as anonymous on the blog and then you can add your name to the post. I'm just hoping I don't get a lot of spam doing this.

In doing research on how to fix this I also found out how to add a reply feature to the comment section so now, when life isn't psycho busy, I can reply to comments.

I'm hoping I can find a way to fix this soon so I too can leave comments on the blogs I follow.

My mom is at the hospital with Mason and I will go and see him tonight and update on how he's doing.

Sternal dehiscence

Yep, it's as bad as that sounds.


They took you to surgery about 11:30 and estimated that it would take about an hour and a half till you were back in your room.


Aunt T came and kept me company and kept me from going crazy. At about 12:40 then sent a text to say that you were open and surgery was starting.




and then we heard nothing.

for over an hour and a half

n.o.t.h.i.n.g

I was going out of my mind. I've sent off many patients to get a debridement and it's usually an in and out procedure so I knew something was going on for it too take so long.

I went to the front desk and asked them to call for and update (thanks for the idea Auntie T) and the report was they were just closing you up.


So we hung out for a bit then I just couldn't wait anymore so I went upstairs to find your nurse Rea. She had heard that you should be coming up soon and that you had needed some blood and an albumin transfusion.

So Aunt T and I stood in the hall waiting till they wheeled you by and we both thought you looked good. Pinker then before surgery and already off the breathing machine.

Very soon after Dr. Bailey came to talk to us and explain what they found.

The wires holding your sternum together had come loose on the one side and your chest plate was floating free and the sides were bumping up against each other. (gee wonder why coughing hurt you so much?).

This constant irritation causes inflammation and infection and that is why you were not healing very well.

The opened you up and cleaned out all the infection and debrie they found. Dr Bailey told me that the infection didn't go to the bone but some cartilage was involved. So after a good cleaning they flooded your chest with betadine and use a special closing technique to close the sternum (even though I asked about this twice I can't remember what the special closure is called but Aunt T remembers so I will have to ask her) and then further re-inforced it with sutures on the outside of your chest.

I asked Dr. Bailey a couple more questions about how this will affect you long term (it wont), will you have a void where you lost tissue/cartilage (you wont). And then we chatted about a few different things.

I then remembered to ask him about the blood transfusions and Dr Bailey, as easy as you please, told us that they had nicked your right atrium (upper right part of the heart) and they had needed to replace some blood that you had lost.

I was a little startled to hear this but know that it sometimes happens so at first it didn't faze me all that much.

Then Dr. Bailey, again as easy as you please, said and I quote...

Yes the anaesthesiologist had to put his finger in the hole till the blood transfusion came. It was a bit scary there for a minuet but it turned out OK.

At this I gasped grabbed my heart and a hold of the banister and told Dr Baily while as a nurse I find that fascinating, as a mother it makes me want to pass out.


We all got a good giggle over that one.

So now your back in your room. You were miserable with pain but Rea got you Morphine every hour and your now settling in more comfortable.

The plan now is to re-start the oxygen treatments twice a day and if everything goes well and there are no complications we could get discharged in a week and continue your treatments as an outpatient.

So you hear that Mason .....NO complications.

No complications and we can take you home.

On a personal note George and I are overwhelmed and more touched that we have the words to say at the out pouring of love, support, and prayers we have received from all over the world. I have no idea why our journey has touched so many but I want you all know how much it means to have you travel with us as we build our road with hope.

I feel like you all lifted our son and held him up in the love and the light.

What an amazing gift you have given us.

What an amazing gift you have given our son.

I can't wait till he is old enough to understand what wonderful people you all are.

Not better but no worse

The Dr's were all in to see you first thing in the morning and all agree that taking you to surgery to debried the wound is the best course of treatment at this point.


Through the night you remained lethargic but stable only needing occasional oxygen support. You haven't spiked any more fevers but we have been giving you Tylenol around the clock so it might just be keeping your fever down.


You are almost never awake and cry when you cough it hurts you so much.

They weren't ahead and changed your dressing to get a look at it before they take you to surgery. The Dr said she can see your sternal wires and she thinks that might be part of the problem. They are planning on opening your chest back up and cleaning out all the dead skin and infection and then closing you back up after they make sure the infection hasn't gotten to your bone.

You got Morphine with your dressing change so your not in pain now but finally resting.

There is a baby who's heart needs Dr. Bailey and then when they are done with that surgery they will take you down.

Praying that this is what you need to turn the corner and start getting better as soon as possible.

From bad to much much worse

This morning pus started to leak out from under your dressing. Dr. Bailey held your oxygen treatments, had the dressing changed, and wanted to see how you did for the day. We also got an infection disease Dr. on your case now to make sure we are doing everything we can to get you better.

You are now on three antibiotics and they have increase the vacuum on the dressing.

Your miserable and lethargic again. You've only been awake about 20 minuets total today.


Dr. Bailey came in to see you this afternoon and thought you looked well enough to wait to see how your wound looked in the morning. If there wasn't any improvement or if it looked worse he would take you to surgery to do debridement in the morning.

So we went on with your day. Tylenol seems to keep your pain mostly controlled except when you cough.

Then around 5 I started to think maybe that your chest around the wound was getting redder. At about 5:45 I was sure it was. I pointed it out to your nurse Mark and he put a call out to Dr Bailey.

The plan now is to take you into surgery first thing in the morning.

At first we were just concerned that you had been doing so well and were now sick again.

We are now scared.

Terrified.

You've just gone downhill so fast. I'm scared you may have gone septic.

How much worse is it going to be before it gets better?

Please pray.

Our heart is on the line again.

Not going home

You spiked a fever last night so they want to re-start your antibiotics.

We are here till at least Friday maybe as long as a week depending on what your labs show

I came this morning with your bags all packed and cupcakes for the nurses only to find out as I walked in the door that we we were staying.

You can see your not feeling well today but Tylenol seems to help.

Don't worry if I don't update the blog for a bit I'm kinda taking this hard.

You'd think by now I would know better then to get my hopes up.

Yesterday, today, and tomorrow

Sorry for the lack of updates. I just haven't had it in me.

I don't want to sound too dramatic but that first oxygen/torture treatment traumatized me. Watching Mason in pain just sucked up the last of my energy and reserves and I've been scraping by on minimal energy ever since.

The good news is as terrible as the first treatment was the rest have been wonderful. Uneventful as a matter of fact.

But I'm getting ahead of myself. I have a lot to catch up on so forgive the super long post and tons of pictures.

They stopped your feeds Tuesday night at midnight and then we waited for your procedure. The plan was to put in tubes in both of your ears, and since it was an ear nose throat Dr putting in your tubes, get a bronchoscopy to see your laryngomalacia and trachea.





They didn't end up taking you till six that night. In the end you went 19 hours without eating. No bueno.

The first bit of good news is we got Dr. Wareham the ENT Dr I have been trying to get your services switched too. I practically jumped for joy when I found out she had done your surgery and begged her to let us switch to her practice which she readily agreed too.

The second bit of good news is that, while she feels that your epiglottis is very floppy (the laryngomalacia) and causing blockage in your airway and the stridor we hear when you breath, past your epiglottis your trachea is STRUCTURALLY NORMAL!! Woo Hoo!

We no longer have to worry when you get intubated (although I am still going to avoid you being intubated when ever possible).

She also thinks if we fix the cleft in your palet that we would take away one of your airways and cause some severe blockage. She is going to talk it over with the cranial facial team but feels we should wait till you outgrow the laryngomalacia before we fix your cleft palate. While it would have been great to fix your cleft sooner rather then later to avoid possibly causing speech problems making sure you can breath is way more important.

She also was able to visualize both vocal cords and said neither is paralyzed. Woo Hoo!

The last bit off good news (more than a bit actually) is your ears where FULL of fluid. So that means possibly some of your hearing loss may be from the fluid build up!! We don't know if it will change anything but there is a least a chance that it will and that's good enough for me! We will have to get another ABR now but the possibility that you could get have less hearing loss is exciting.

Since we were in the hospital so long they went ahead and did your echo (thank goodness because it saved us almost $500) and the results were great! Dr. Bailey said it looked excellent. Love it!

Your PICC line wasn't working so they tried to put in a new one. Look what they did to you! 12 sticks on one arm alone. I flipped when I saw this. Actually I started bawling. I just wish you could just be a baby and not have to deal with all this pain.

After the horrible PICC line experience we headed off to the first oxygen treatment. You all know how that went.

At first I was very fascinated by the whole process taking pictures and asking 100 questions about the process.

So Thursday night after the horrible oxygen treatment I told them that I wanted to accompany you for the future HBO treatments or I would not consent to them.

So of course when we got there, at 5:45 am Friday morning, they wouldn't let me stay so I refused the treatment. I guess they thought I was kidding??

In fact the nurse that was there was being a total rude jerk to me and I told him as much. So off we went back to the unit.

and then I became THAT mother.

I just couldn't care what they thought. I had to make sure you weren't going to be in pain again. The only way I could do that was to be there.

At 8 am they brought us back. This time the nurse who was a total jerk to me was super nice. I'm not sure what brought about the change and I don't really care as long as I got to be there with you.

They deiced to sedate you and give you Morphine half way through the treatments.

By about 40 minuets into the treatment when I realized you were fine I started to feel like I had taken a sedative and felt all shaky. I think I must have just been super tense and stressed out and once I knew you were going to be fine I started relaxing.

But I was drained. I insisted your Dad get off early and let me go home. Honestly I was so tired I wasn't sure I would be able to drive home but your Granny talked to me on the phone and kept me awake.

I realized at one point that I have been dwelling on that first oxygen treatment and reliving it and doubting myself. I don't know why I didn't stop it except they had drilled into how bad it was so I didn't.

But I should have.

Monday I realized I was just going to have to let it go. Our plates are too full for me to be obsessing and stressing out over something I can't change.

So I'm letting it go. But it really was so terrible.

The good thing is you have no memory of it and going into the tube doesn't bother you at all. You either sleep or watch TV the whole time.

On Friday you had a bedside swallow eval and did great! You took a whole 7 ounces and loved it till it came out of your nose. Then you were done.

You did so well they ordered a video swallow eval on Monday! Fingers crossed.

Your Aunt Tiff came and brought me lunch and kept me awake till your Dad got here. She had too much fun styling your hair in different ways. Here's the punker look.

and here you are channelling Justin Biber. Baby, Baby, Baby oh! (the only JB song I know)

Dr. Wareham did an awake scope to see how your vocal cords moved. Did I mention how much I love her? Well I do! On Saturday your Granny came and stayed with you so I could have the day off. She's the best-est! Your Granny bought this hat for Pierce before he was born and I wanted to get a picture of you in it too.

Cousin AJ came by and brought you a card and this monkey.

Which you love.

It was wonderful to see them. Can't wait till we can spend time together outside the hospital.

Monday you had your video swallow eval.

They had this little chair for you to sit in.

and thin, thick, and pureed foods for you to try and eat. I thought you looked like the monkey in the space program.

Is it's just me?

But you failed the swallow eval badly. You aspirated thin, thick, and pureed foods. Bummer but I'm glad you at least got a chance and we will work on it for the future.

The put a wound vacuum on you. It constantly vacuums away the drainage and infection from your wound. They are hoping the wound vac, and the oxygen treatments will speed up the healing process for you. Unfortunately while your wound did look better it didn't have the red, beefy, new skin they were hoping to see.

The plan now is too get discharged on Wednesday home with the wound vac and for us to come back once a day Monday - Friday for more oxygen treatments.

I'm not sure how much longer they will keep the wound vac on or continue the oxygen treatments but it looks like at least two more weeks.

It's a lot to add to our plate but as long as we are home we will manage.

Did you hear that baby?

Home

Home

HOME!

Dorthy was a genius!

Another Night Together

Mason,

You are doing much better today!! It is like you are back. You are reaching playing and pulling what ever you can get into your mouth. You even turned sideways in your bead and pulled off your pulse oxygen sensor.

By the way you nearly gave me a stroke as I was truing to figure out why your oxygen level was dropping and dropping. I was looking for loose wires I was making sure the unit had power I even suctioned you and nothing. This took a couple of minutes. Then I saw the glowing read light in your mouth and figured it out. And I thought you would be the good one, you and your brother are going to make sure I stay on my toes. We have an understanding, save the drama for your MAMA.

So you had a treatment this morning and all went well. You seamed content and you where watching Finding Nemo. At about five we started the next treatment. I had to leave after a little bit but you were sleeping through it so hopefully all will go better.

No sedative tonight I could regret that later on. Maybe i can convince them to give it to me instead!

Your Mom went to sleep as soon as she knew you were OK. She has been by your side night and day while I have been working. She truly loves you. So do I.

-Love Dad

Really bad day

I had post planned. Telling you all the things that have been happening the last two days.

I knew what pictures I was going to post.

Mason in the hyperbaric oxygen chamber next to the picture of Michael Jackson in the chamber.

We went for the treatment.

Mason was his happy sweet self.

they started the treatment

and he started screaming

and didn't stop for the next 90 minuets.

They can't stop the treatments really. Like a diver coming up too fast it can kill you, if your wondering why I didn't stop it.

I got them to give him morphine about 20 minuets into the treatment but it didn't help.

Mason writhed in agony.

I sat next to his bedside sobbing praying for it to stop but he just kept screaming.

They say that the treatments don't cause pain. In fact the nurse had been there since 1998 and had never had a patient experience pain before. They are guessing maybe his wound was causing the pain but they don't really know. The second the pressure started going down Mason was fine.

We have the next treatment tomorrow morning at 6. They are going to sedate him and give him pain meds every 10 minuets.

I not supposed to be able to go with him but I told them I WILL be at the bedside for every treatment from now on or I will not consent to anymore treatments.

I also told them they have half an hour. If he is in pain I will stop it. Of course with as bad as his wound is he really needs them.

This poor kid can't get a break.

I feel like I watched someone torture my kid for a hour and a half and didn't stop it.

I feel sick to my stomach. I keep having flashbacks. Seeing him arch almost in half screaming in pain.

I think this will go down as the worst thing I have ever experienced in my life.

and it didn't even happen to me.

Imagine how bad it must have been for him.

The thought will haunt me till the day I die.

Unbalanced

Yesterday 9/5 your Abuelita and Tio Alex came to stay with you so your Dad and I could get away from the hospital. They said you had a really good day and hardly fussed at all. Of course your Abuelita held you for most of the day so I'm sure that helped.

Your Dad and I should have done a 100 different things but all we wanted to do was to spend some time with Brother. We didn't do much, lots of family hugs (missing you of course), some couch wrestling, playing in the backyard, and a nice family lunch together.

I felt completely unbalanced. Like when you have one foot on the dock and one foot in the boat and praying you don't fall in. I enjoyed being with Pierce so much and the few hours we had together flew by and seemed so inadequate.

At the same time I felt pulled to be with you.

Were you in pain, were you getting your meds? Did you need me? Does your brother need me more?

I'm faced with the impossible choice. To choose between my children.

No matter what I do. It just doesn't seem enough for either of you.

and this is why we strip him for pasta night!

Today is your 8 month-iversary. I made a sign for your bed and brought in donuts for the nurses to celebrate. This was of course not the way we planned spending the day but your here, and your going to get better and come home. We'll take it!

Your Aunt T stopped by and brought you a little gift.

Your nurse today was Rae. She was awesome. A real advocate for your pain control. Boy did you keep her running.

So the new plan.

You wound is not getting better despite all the treatments. Today in fact you coughed and bright red blood started seeping out of your wound. Scared the crap out of me!

Dr. Bailey had decided to turn your care over to the wound team and I'm grateful. Wounds is what they do and I'm hoping their treatments will help you finally turn the corner and start improving instead of progressively getting worse.

They have increased your calories to 27 Kcals. They have also added protein, zinc, and vitamin C to your feeds to help aid in wound healing.

They have switched your dressings from wet to dry to a wound vac. The are hoping by vacuuming away the drainage you will start to heal.

They are also going to start you on hyper baric oxygen treatments (yes like Michale Jackson!) but to do these treatments you need ear tubes placed so you are on the list to have the tubes placed tomorrow.

and then we wait

and see

and hope

to get back on sold ground again.