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.

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!

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.