Update on Bennet, 12-30-08 8:20pm

Thanks for the thoughts and prayers everyone! Here is the latest update I am sending out:

Well, were back! Although we are in a different part of the hospital, the Pediatric Intensive Care Unit or PICU or Peds ICU for short. We arrived on Sunday morning after Bennet gave us the scare of our lives around 3:30am when he stopped breathing, went completely limp, had a slight seizure like moment and took all the stimulation we could provide short of CPR to keep him taking small breathes until the first responders arrived with oxygen. We are so glad that at the time I was holding him skin to skin on my chest and was able to quickly respond. Had he been in his bassinet or papazzan chair the outcome could have been fatal.

At the hospital ER he was put on a monitor and then had another "Let's see what happens when I stop breathing" episode. He was desating and once set up in PICU was put on the nasal cannula with oxygen. Sunday was fairly calm with occasional episodes of apnea, some self resolved, some needing stim. He had lab work drawn and everything came back looking fine. He seemed fairly stable and they even talked about sending him to the normal Peds floor since he wasn't technically in need of intensive care. Monday was more watching and waiting with only a few episodes of mild apnea.

I went home at 4pm on Monday to celebrate Arlana's 5th birthday and came back at 1:00am. He had taken his 1am bottle very well, some small episodes of desating and apnea. Around 3:30am it all changed, he was having multiple, severe episodes of apnea which included the occasional Brady (Heart rate in the 70's vs 150's) desating and the need for some hefty stim and increased oxygen. The nurse and I fought to keep him breathing. There was talk of puting him on a resperator.

Now, they taught me in NICU that you shouldn't worry until you see the nurse worry and you shouldn't be overly concerned until the resident doc is called and that you shouldn't panic until the attending doc is called. Well, we had it all! It was a very intense several hours as we continued to keep him breathing as they debated about what treatment would help the most. They redid the blood tests and viral tests and administered a breathilizer (sp?) treatment which provided the most immediate help and call for a blood transfusion when the blood work results showed a hemo of 8 instead of 14.

The reflux is severe so they put a tube down his nose past his stomach into his large intestine with a slow continueous feed of breastmilk in hopes this will help give him a break. It should also help show us whether or not the apnea episodes are caused by the reflux, the anemia or the cold he seems to have (although the later hasn't been able to be confirmed with any of the tests and his lungs still sound ok)
He certainly qualifies as Intesive care now and his nurses are staying very close by or assigning someone else to stay close if they have to leave his room for any amount of time, especially if I also have to leave the room for anything.
He had one apnea after this was all done but is now resting.

PICU is nicer than NICU because we have a private room and I have been able to move right in with him. The pull out bed is terrible but better than a chair. Since I am breastfeeding they are taking care of all of my meals and snacks sending trays right to the room which is a HUGE help as it is very hard for me to leave him for more than the time it takes to use the bathroom. They also provide me with a place to shower so my basic needs are completely taken care of. We are praising God for holding him in his hands and for giving me nerves of titanium! Please pray that the doctors would be able to figure out what is going on and be able to treat it.

How awful Nina. It sounds frightening. We are all still thinking of you and Bennet. Please keep in touch.

Nina,

My thoughts and prayers are with you. It is so scary when something like that happens, my son had reflux when he was a baby and we had a incident, nothing to the extent as yours, but I remember how scared we were. Thankfully he outgrew the reflux pretty quickly.

(((HUGS))) Nina! My thoughts & prayers are with you & little Bennet.

Towanda

My thoughts and prayers are with you. And just remember....GOD IS GREAT!

Lifting you and Bennet up in prayer
jul

Oh Nina.........how scary.....at least you are now close to where Bennet needs to be.......

Thoughts and prayers to you...........

Nina, I join you in thanking and Praising God for holding Bennet in His hands. I will pray for Bennet and you. To God be the Glory.

I'm still hoping the doctors figure out what is causing Bennett's problems. Once they figure out the problem, then it might be easier to know how to treat it.

We are all so worried for you.

My heart goes out to you Nina, I know it must be very scary. I'm glad you are able to stay with him and they are taking care of you.

Will continue with our prayers.

My heart goes out to you Nina, I know it must be very scary. I'm glad you are able to stay with him and they are taking care of you.

Will continue with our prayers.

What a rollercoaster ride! You sound like one great mother! I hope he comes back to a normal routine soon! Thoughts and prayers!

Nina all our thoughts and prayers will continue for Bennet's health and that you and James continue to be strong. I know one thing, you have a fighter on your hands and this is a good thing. In the meantime, if you need anything please let me or Leanna know.

All our best,
Nick and Leanna Natale

Nina, I don't even know what I could say or write to even to begin to try to console you. As Nick said, Bennet seems to be a fighter and that's the good part! I will continue to pray from Bennet's health, for strength for you and James and that the doctors and nurses will find the cause of Bennet's problem so they can treat him and he can return home to his loving family.

Hugs,
Christina

we are all definitely praying for all of you and wishing your family a healthy new year

We are sending warm healing thoughts you way.
Bren and Jerry

Prayers to Bennet and his family. May God show the doctors what they need to do for Bennet.

we're still praying for both you & Baby B!!!

Nina, continued positive thoughts and prayers for you, Bennet & the rest of your family.

Great News!!! I just got an update on Bennet via Facebook. He has been moved from PICU to the regular Peds floor. They had no alarms last night. There was no other info. Nina had posted it via mobile conection. Even when he is hooked up to all of the tubes he is really cute! (James had posted some pictures.)