Post Surgery Day 29

We found out that the best therapy for Ellie is seeing her brothers.  Rhett and Rhome went for a visit yesterday and got Ellie to smile and giggle which she hasn't done in a month!  She is always really calm and happy when she sees them.

Ellie is definitely not a morning person.  They always tell us how mad and irritable she is in the morning but when we visit her she never seems that way.  She is always asleep swinging in her swing.  She is generally calm as long as she is moving so we put her in a wagon with lots of pillows and got her unhooked from the machines and monitors to take her for a stroll down the hospital halls. 

The dreaded chest tube finally came out on Thursday.  She has had chest tubes in her for 4 weeks and we've heard how uncomfortable they can be so I'm sure she is happy to be rid of it.

Today Ellie got her picc line out.  There really is not a need for it anymore since she is getting all of her medications orally although they are going through her feeding tube.  Keeping the picc line in longer could be a source of infection also.  Getting that out means that there is nothing left on her that we won't be taking home with us.  She has her oxygen cannula and her feeding tube which we will have to work on getting rid of at home.

She will also go home on quite a few more medications than we are used to - methadone and ativan to continue weaning, bumex and aldactone as diuretics, sildenafil and oxygen for her pulmonary hypertension, and possibly prevacid and zantac to help with any acid reflux.  The nurse practitioner increased her ativan dose yesterday and said that today seemed to be Ellie's best day so far.  On the withdrawal scale she was a 2, anything 3 and below is good.  We will continue to help her wean off those medications, dropping them every 3 days so it could take about a month to be done depending on how she handles it.

I'm so happy that Ellie is doing so much better but now comes the stress of bringing her home.  We have wanted her home for such a long time but we didn't think about how different it would be.  In addition to all of the medications that we have to administer to her at various times of the day, we will have learn how to place a feeding tube so we can give her feedings through it, she will have to have speech therapy (I like to think of it as oral therapy because she's not speaking yet!) and physical therapy, and still have multiple doctors visits.  I have never had any desire to be a nurse, but I feel like I'm pretty close to getting my degree!