Wednesday, January 18, 2012

No news WAS good news

As usual, I am a horrible blogger.  There has been lots going on however, and I will try to update as best, and as briefly as I can.

When we last left our heroine, she was riding into the sunset on her first pony ride.  Right around Halloween was the best Sammy has ever been, and I hope the pics from the last post show it.

At the end of November, Samantha caught an illness of some sort, with fever, congestion etc. It eventually passed and no real intervention was needed. However, Val and I began to think a few weeks ago that the cold had a negative impact on her.  We also had changed some things in Samantha's care within the last few months. (Sam became vent free in September, and the next month, due to lots of weight gain and eating tons, we cut out her overnight tube-feeds and replaced them with water to ensure she was still getting all of her hydration. )

Sammy was still doing all the things she had been doing (walking, talking, eating lots, funny and cute as ever). But we noticed around the holidays that she didn't want to walk as much. She wanted to play less, be picked up more etc and so forth.

While Samantha's numbers were still fine (CO2 levels, o2 levels), Val and I couldn't help but flashback to last year. We both agreed that this slowdown in Samantha was reminding us a lot of last year.  Sam started slowing  up a couple of months before she went into respiratory failure.  We did not want to go down that road again, and were thinking perhaps we would give her additional help NOW, before things spiraled as they did last year around this same time.

A week and a half ago, we consulted with Dr. C in Ohio and expressed our new concerns.  He agreed that although he still feels that the EPI-743 is doing wonders for Samantha (as do we), perhaps adding back in some of the care that we had felt she "graduated" from would be a good idea. He was very kind in his email and did mention that as parents/professionals, there is a tendency to "move away from the technology that helps--which is fine until we need it again, and then we should use it".  He encouraged us that this was not a step backwards at all.

So, last Monday morning we made the decision to bring the vents back into the house so that we could allow Samantha to use vent support at night to see if that helps bring back some of her previous energy. On Monday, Val and I were feeling a little down as we both were really looking forward to taking out her trach in March.  Bringing the vents back in meant that at the very least, this step would be delayed a little until we figured things out a little more.

And then, on Monday night, Samantha got sick.  She went from being totally ok in the morning, to having a fever, cough, congestion and throwing up by Monday night. She stopped eating.  Sam stopped wanting to play. Thankful for her g-tube, we and her nurses tried to hydrate her as best we could.  On Tuesday her vents came back so we put her on the vent that night. She continued to have fevers on Wednesday, and we grew increasingly concerned. We made the decision on Wednesday to go to the ER and got some bloodwork and a chest x-ray--both of which were unremarkable.  Samantha hates the ER more than anything else and was not happy to be there--getting poked and prodded. Sammy was crying and very upset in addition to just feeling horrible.  Therefore, despite our reservations about leaving, when the attending doctor told us things were ok enough to go home and to continue to keep her hydrated through her tube, we jumped at the chance to get her out of there.

Instead of getting better, Samantha continued to get worse. She wanted to lay in bed all day, and didn't even want to watch Sesame Street on TV. Sammy continued to refuse food and was throwing up a lot of the liquids we were putting in her g-tube. Her cough sounded horrible and she seemed like she was in pain.  Again we reached out to Dr. C on Friday who told us to go straight back to the ER and request IV fluids. He cautioned us that the doctors cannot treat Samantha like a typical kid. And, that her Leigh's disease means that she needs extra support even during a normal routine childhood illness.

Friday afternoon we headed back to the ER, and THAT attending doctor was surprised that the attending on Wednesday did not admit us right then and there. So, we got a bed in the PICU Friday night and more bloodwork was run.  As she had been on antibiotics for several days and still had a fever, they ran a tests for viral illnesses.  To be honest I thought that was done on Wednesday and had come back with nothing.  On Saturday morning, we found out that she tested positive for RSV.  We aren't sure how that could happen as we are very protective when it comes to Samantha and germs. But, I guess you really can't prevent a child from getting sick, no matter how hard you try.

The PICU kept her hydrated through IV fluids. On Friday night we were really concerned when Samantha started desatting while on her vent, so O2 was added.  That was the first time Sam has ever needed o2 while on her vent.

Although Samantha still wasn't eating, we kept trying to use her tube to get her formula in her. When she was tolerating her feeds again, we stopped the IV. And, finally on Saturday night her fevers stopped.  In addition, we were able to stop the o2 use. On Monday we took her off of her vent for the first time in days.  The doctor on Monday felt that if there were no negative events, we could probably go home on Tuesday and continue to get her stronger there (if there was no IV fluids needed anymore, there was no real need for us to be there as we have a lot of things in place (feeds, vents) at home.

Yesterday (Tuesday), she was obviously still feeling better, and we got the official clearance to go home. And here we are.  I am happy to report that Samantha ate a pancake this morning. And wanted to "play" for the first time in over a week. She is now relaxing watching Sesame Street.

Sammy still seems a little weaker than her normal self. But that is to be expected considering where she spent the weekend.  Val, Sammy and I are all very, VERY happy to be home.

Until next time,