Saturday, September 11, 2010

FINALLY...the promised updates AND photos :)

Sorry I didn't get on yesterday and blog. It was a very long day.
Where to start. Since I last blogged about the hospital stay...
Eli was rushed to the PICU, super sick. Never able to get an IV. He struggled alot. Kept his O2 super high, had to switch between mask and nasal canules. Bagged a few times. Lots of suctioning. Labs galore. 12 lead EKG, ECHO, tons of medications. It was an exhausting scary time for all of us.
Lots of doctors and meetings and heart to heart talks.
Official diagnosis was....pulmonary hypertension, reactive airway disorder, pertusis, pneumonia, and rhinovirus.
It was decided to send Eli home with 16 out of 24 hrs a day of nursing. He's less exposed to things here at home, than in the hospital. So Bob and I were taught full infant CPR and resucitation and how to use the Ambu bag. We were given a huge list of things we had to get done to be able to bring Eli home. We were finally able to leave the PICU and come home late Tuesday the 7th.
Since then we've slowly weaned down a bit on the O2. Watching his heartrate constantly to make sure it's not struggling. With the pulmonary hypertension we can't just watch his O2 sat, we also have to keep a close eye on his heartrate.
He has tons of doc appts over the next 3 weeks to determine the damage and what to do next. He will have his 12 lead EKG and his ECHO redone in 3 more weeks to determine how much damage to the right side of the heart. All of his upcoming surgeries and procedures have been cancelled, indefinately. He simply isn't stable enough to deal with anesthesia.
The kids are happy to have us home, and we are definitely happy to see them. The 8 or 9 days we were in the hospital, were the longest we've gone without seeing them. Bob is still on leave from work, he will most likely be going back this coming week.
The outpouring of love and prayers and thoughts from friends and family and even strangers these last 2 or 3 weeks has been amazing. We were getting over 200 emails a day, many from people we didn't even know. We received prayers from all over the world. We are amazed at how quickly everyone got the word out and the responses from everyone. The food, the help, the visits, the phone calls, the shoulders to cry on, the support, the ears to listen, all of it... We can't begin to describe how we felt. We felt the infinite power of the human spirit and we saw it work in Eli. Just can't explain how we felt. And a thank you isn't enough but we have nothing more to offer right now.
Here are some pictures of Eli in the hospital

Here are some pics of Eli since he's been home and his room.
The link is to Eli's room pictures
Eli's Room Pictures

Here are a few pictures of the oldest 4.
The 1st pic is the 4 kids at EP

The last are of the kids at Riverside Park today. They had a great time. Jace enjoyed climbing repeatedly to the top of the space ropes. Ben had fun, but didn't go as high. Emily was scared to go up at all. Ari refused to go near the ropes and had a great time on the balance beam!

I promise to TRY and keep up better with updates over the next few weeks. Our pulmonologist told us on discharge day "I think we are pretty close to past the point of having to worry about going on a vent at this time." Interesting words to hear when they are sending you home. Which basically tells you we are still busy and stressed and worried alot, and tired and all of that good stuff. But I will try and do better on updating. Sometimes I forget that not everyone is on my facebook page! :)
Much love to all!

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