Sunday, February 10, 2013

Thriving at Home



December 10, 2012

It has been a whirlwind since Jordan has been home.  We have been figuring things out.  We set up our piano room as our mini NICU/Jordan's bedroom (forgot to take picture and its is dark and peaceful right now, so next time:).  We started out with nursing care for 24 hours a day for almost a week, then down to 20 hours and now down to 16 hours a day.  It has been working well.  Yes, it is a little weird having another person constantly in your space, but they have been wonderful nurses and it hasn't been as bad I originally thought it would.

Jordan I feel is thriving in our family environment.  He is gaining weight, starting to smile and trying to eat his fists.  It is fun to see his progress.  What I really enjoyed this week was when his physical therapist who worked with him at St. Vincent's came for a home visit last Monday.  She was excited to see his progress.  It was fun to hear her talk about the way he was when he left St. V's compared to how he is now.

This past week we traded out his Trach again.  Second time for me to do this.  Still scary and still nerve wracking, but we did it.  It went a little smoother and I wasn't in the state of shock and horror as I was the first time.

We have ventured out twice with him for doctors appointments and he has done well.  It is nice having the nurse in the back seat with him.  This last time we didn't put him on any oxygen and his stats stayed normal.

Our kids are doing really well with it all.  Tyler and Aaron are struggling with less attention coming their way.  A little more fits and teasing.  Hopefully we get through that pretty quickly.  All the kids have learned to suction Jordan.  The 2 younger ones love suctioning his nose with the BBG (non invasive baby booger grabber).  The other 2 have gotten to the point they can do his nose and trache.  My favorite is seeing Brooklyn holding Jordan and cuddled on the couch.  He starts gurgling and she reaches over and turns on the machine and suctions him like its no big deal.  I am really proud of them.  They treat him like normal and are not afraid to hold him.  They love their little brother.

Aaron has got quite comfortable with the nurses.  He will go and just chat with them.  He tells them what his baby brother likes and isn't afraid to instruct them.  He also gets after them if they do "his job."  Which is to turn the suction machine on and off.  I think he keeps them quite entertained with all of his comments.  The nurses are so good to make sure my kids are involved with Jordan anytime they want.

We are definitely getting more confident in Jordan's care.  If he was an only child it would be a lot but doable.  With 4 other kids it can be challenging.   Sometimes you can take him from room to room with you as you do things and other times you sit next to the suction machine and don't move.  It is nice when the older kids are home because they can be a big help.  I hook up the pulsocsimeter (I have no idea how to spell that) for his oxygen levels and heart beat, set the suction machine next to them while they hold Jordan and listen for them to yell if anything goes off or wrong.   Thank heavens we have nursing help as much as we do.  I would never get anything done!

I must add in here as well that I have amazing friends.  This last week I had Jana stop by because she had to "kill time."  So she cleaned up my kitchen for me and folded my clean laundry.  Thanks Jana!  Another day when I was trying to get out the door to take Jordan to the doctor Amy showed up and helped me get my kids out the door and stayed and cleaned my kitchen and put laundry in and folded the clean clothes.  That same day I caught Angela coming out of my house when I pulled in and she had been switching my laundry and made Aaron's bed with clean sheets since he had an accident the night before.  It did however cure her of ever wanting a bunk bed.  Those things are hard to change sheets.  Try it while your pregnant, not fun!  Also, my ward members dropped off more meals this week as well.  I am so thankful for all the help I am getting.  I keep thinking I can manage on my own and am quickly humbled.  I am glad my friends haven't listened when I say that I am doing fine and insist on helping anyways.  Thank you!

It has been challenging since we have been home.  I have had 2 more bouts of mastitis which both knocked me off my feet.  Which now make a total of 6 times.  That is such an awful wicked thing to have.   Then last week I took Brooklyn to the ER for swollen lymph nodes in her stomach.   She was doubled over in pain and they 1st thought it was an appendicitis.  So grateful it wasn't.  So after 8 hours they gave her some medication and we came home and slept.  This past week however was non eventful.  We welcome days and weeks and even months like that.  Boring is good.   Now if we can wrap our head around Christmas!  We still have about 15 days to pull it together!

Well, that is our update for now.  This will be our first week where we have 2 days alone without a nurse and the next week we have several doctors appointments and a "procedure."  Jordan gets his G-tube changed to one that will be shorter and more accommodating for clothes and so he won't pull it out as he gets bigger.  He also will get his hearing retested and will see the ENT again for his trache.   Always busy times. I am sure it will be after Christmas before I post again.

We hope you all have a wonderful Christmas holiday!

   Jordan's night nurse brought a big stocking tonight to take a picture with him in.  Turned out pretty cute!


   Thanks Mara!  This outfit is adorable!

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