The Nissan Works!

So even after his surgery it seemed as though Bridger was still refluxing and that he was in the 5% of patients that the surgery had not been successful. On Thursday he had another upper GI study which showed that the Nissan is intact. However he has slowed motility in his esophagus and is still having severe pain from something, but we don't know what. Bridger is unable to have a scope of his throat due to the Nissan (he cannot expel the air that would be injected) so we can't look for esophageal trauma. So for now the doctors have to go through the process of elimination. He also is not shedding fluid very well because of his heart function which is causing him to work harder while breathing. He is trying so hard, we hope sometime soon he can have a little normalcy in his life.

---------Staci

60 days

Well we have been here for 8 & 1/2 weeks and still going strong. Bridger is recovering well from his last surgery. The doctors had tried stretching his stomach so that he could be fed intermittently, but he is not ready for that yet. So for the next little while we will keep him on continuous tube feedings while he continues to recuperate. Other than that we are just hanging tight and taking things slow.

--------Staci

New Bridger Pictures (thanks for sending them Papa)

?

So today is day 2 after surgery. It was a little better than yesterday, he is uncomfortable from surgery and the fact that he is now getting food into his stomach after two months of not. We have been working on getting his digestive system moving again and making sure he can tolerate food in his stomach. He is on oxygen and his lungs are wet, so that is also another project to work on. Hopefully next week we will be able to start therapies again for his strengthening.

-----Staci

Surgery is over

Bridger had his suregery today at 12:15pm. Everything went according to plan for him so far, the surgeon tightened his stomach around the esophagus and placed a feeding tube to the left of his belly button. He came out angry because of being re-intubated so he was given a little extra sedation so that he wouldn't damage his throat with the breathing tube in. We will see in the coming days if this procedure has helped to make Bridger more comfortable (I hope!!!).

--------Staci

Surgery Tommorrow!

So we are scheduled for Bridger to have the Nissan procedure and G-tube placement tommorrow. We are very hopeful that this will help to feel more comfortable and more able to direct his energy toward healing instead of wretching all of the time. The surgery should start about 12:15 and take about 90 minutes if all goes well, they will be re-intubating him, but hopefully not for too long. I'll let you know how everything goes once we are settled.

--------Staci

Hmmmm.........

I just don't know what to say, yesterday we went down for a study of Bridger's stomach and intestines to make sure that the Nissan surgery was warranted for him. He had what we thought was a bloody nose before we went down, but it had stopped. During the middle of the test he began to vomit blood and this continued even back up in the ICU. During all of this he aspirated some of the blood into his lungs which has caused him to have a more difficult time breathing, but did show the neccessity of having the procedure to improve his reflux. So he received a blood transfusion last night and is resting today. The doctors and nurses will monitor his respiratory status closely and we will move forward with the plans for the Nissan as soon as Bridger is well enough to tolerate it. So for now we are just resting.

---------Staci

That darn reflux

So Bridger is 13 pounds! Which is great. As I said before his reflux is back with a vengeance, we have been up the last 3 nights with him vomiting up his stomach acid. So the plan is for him to have a surgery called a Nissan (where they tighten the sphincter in his stomach so its contents can't come back up) they will also place a feeding tube directly into his stomach so that he doesn't have to have one in his nose. Having this done will help him to grow and be more comfortable with feeds-which will help postpone the next heart surgery. So for now we are still at our "winter home" and now we even have a room with a window. We hope you are all doing well.
--------------Staci

Growing

Today was a little up and down for Bridger. His lungs look okay, but his acid reflux is back full force and with no food going into his stomach the acid burns his esophagus that much more. He has been on a couple of reflux medications from when we were at home, so now they have added one more to see if it will help. He is now 5.79 kg which is roughly 12lb 12oz, I feel like he has grown so much! They are continuing to wean his sedation and have been weaning his oxygen, but today they had to turn the oxygen back up because he was so uncomfortable from the reflux. This evening his feeding tube came out so they had to replace that as well which made him very angry. So right now he just finished his respiratory treatment and he has fallen asleep. Hopefully we will have a quiet night.
--------Staci

No Big Changes

Well nothing much has changed since I last wrote, Bridger is on high flow oxygen and they are trying to wean some of his medications. They are doing a femoral ultrasound and an echo today to evaluate his heart function and circulation. Bridger has started working with physical and occupational therapy to increase his strentgh and endurance. So for now we are still in the ICU and taking things slow.
--------Staci

A Poem

So that other heart mom I met gave me a copy of this poem today:

The Day I Became A Heart Mom

One day my world came crashing down, I'll never be the same.
They told me that my child was sick. I thought "am I to blame?"
I don't think I can handle this. I am really not that strong.
It seemed my heart was breaking. I have loved him for so long.

I will not give up on this child. I will listen to your advice.
I will give my child any chance. No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube. My child must survive!

Will he need a lot of therapy? Will he gain the needed weight?
Please God help me to do this. I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound. Tomorrow I will be kinder.
As another angel earns his wings, I run to my child's bed.
I watch him sleep for quite a while. I bend down and kiss his head.
I cry for the parents whose hearts have been broken. I look to you wondering why?
Oh lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here, but my heart begs, "PLEASE let him stay"

From pacing the surgical waiting room, to sitting by his bed..
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line, I look to them and smile.
You see my child is loved so much, I would face any trial.
That scar I trace with my finger (it's the door to his beautiful heart),
God must have known how much I'd love him (just as He loved him from the start)

A heart mom is always a heart mom, now wise beyond her years.
For those who have angels in heaven, our hearts share in all your tears.
Every day I will try and remember, I was chosen for him (and no other)
I will always embrace that beautiful day.....when I became a "Heart Mother"

----Author Unknown



Well that about sums it all up---Love Staci

New Pictures

Here are some pictures of Bridger when he was re-intubated, when they extubated and put him on high flow for an hour and then when they put him back on C-PAP. Also a picture of the bath after yesterdays blowout, I hope you like them.
Love, Staci

what a day

Bridger's breathing tube was removed yesterday and he was put on C-PAP again-this makes him very angry so they have been keeping him sedated. He woke up a bit this evening and had a giant poop! That is great because narcotics can make you constipated. It was so big and I wasn't expecting that much so as I was changing his diaper more came and was spread everywhere! The good news of that is he got to have a real bath-which he loves. I'll send pictures of that soon.

Congenital Heart Defect Awareness

One more thing everyone--while I was in the waiting room today I met another heart mom who told me about this great CHD website. You can go on just to get info or you can custom order awareness products. All of the proceeds go to CHD research. Click HERE for the website (CHDfamilies.org)

another day

so we went downstairs to the flouroscopy lab today to have another central line placed and now we are back in our room. Bridger had to be sedated and paralyzed again for the line placement so we are just going to keep working on strengthening his lungs and hoping he can gain some weight as well. otherwise no big changes for now.
----Staci

A Long Day

Well they found infection in Bridger's blood and it settled in his PICC line, so it was removed today. They can't place another PICC until the infection is cleared so the doctors spent four hours trying to place an arterial line today. They tried his right wrist, right groin, right foot and finally found success in his left foot. So after some medicine to paralyze him and several sedatives to keep him calm, we are trying to let him rest in order to recover from the whole ordeal. Hopefully we can start strengthening his lungs again after he recuperates from today.
Thanks for everyone's concern,
Love Staci

Staci got a haircut!

Staci's been talking about getting a haircut since they've been in the hospital. Her hair was just too long and time consuming to do everyday when really she just wants to be by Bridger's side. So a friend of Danny and Staci came to the hospital with shears in hand and cut it for her. They put down a sheet in the shower room just off the PICU and went to work. Her friend put it in a ponytail, asked if she was ready, then chopped it off in one lop. Staci ended up with 12 inches of hair that she donated. Now it takes her ten minutes tops and looks super cute.

Love IT!

Leisa