Friday, December 29, 2006

Discharge discussions continued

The charge nurse has been talking to us about discharge on Saturday. They say it depends on the echocardiogram coming back okay. The X-ray of his lungs was clear (yahoo!)

We have to learn to insert and test NG tube placement, administer tube feedings, administer medications, pack and clean his incision, recognize signs of respiratory/cardiac distress.

I am still feeling both hopeful and unprepared. The house is not set up and our first attempt to insert the NG tube may have been in the lungs. This freaks me out.

Anyway, he nursed 66g tonight (up from 50g this afternoon). Sorry this is so short I am starving. I am forgetting to eat and do basic things like clean my teeth. Tonight I am using my birthday present to give myself a hand spa. You don't want to know the details but it involves parafin wax and heat and watching TV.

5 comments:

Wyndi said...

i was very scared to place her ngtube the first time( and the 2nd, 3rd, it gets a little easier, less scary every time) Izzy liked to pull hers out on me. I took her to the ER the fisrt time she pulled it after we were dischrged and they helped me put it back in with out really making us wait (they must do it often for new ngtube moms) i hated the ng tube of course becuase it was just another thing that made me nervouse.

Medicine is a little easier to give when you can just use the ng tube, the first time she needed her meds after they took her ng tube out I sat next to her with about 6 sirnges and thought how am I going to do this, that was the only time I missed the tube.But it does help them gain weight when they are recovering and learning how to swallow. we are here for you if you need help, have questions want ideas about meds, or just want to talk:) there are a lot of expericed moms in the heart group. wyndilee@yahoo.com

Shannon said...

Thanks for the reassurance and your email. The nicest/most experienced nurse showed us the procedure again today and it seemed less scary but it will be hard to do it at home without support.

I am going in at noon to practice checking placement before Wren's NG feed. I shall email

Wyndi said...

is you other half learning how too? it helped that steven know how to check placement so if i was worried he could double check my work. also helped that he could hoook up a feed or do meds and give me a break every now and then

Wyndi said...

i read the blogg but might have missed something else so wanted to ask what they found with his heart. does he have a CoA? Izabell has IAA (interuped aortic arch type b), VSD and she got heartblock from the repair so now has a pacemaker.

Shannon said...

Josh is learning to place the tube too. In fact, he is a bit calmer about it than me.

When Wren was born his diagnosis was "borderline left heart" which seemed to mean a series of left heart structures being small-sized (2+ Z scores less than normal).

In particular, he had a serious coarctation, a small bicuspid aortic valve, a slightly small and odd mitral valve, a small left ventricle with thickened LV walls and a hypoplastic arch.

The arch and coarc were repaired. The ventricle seems to be doing well so far and they are doing the "wait and see" on the valve situation.