Sunday, March 27, 2011

Mac and cheese, Pudding, and no rate on the vent....

Samantha has been having a great time this past week, continuing to charm all of the staff here. She has been talking more and more each day.  In fact, I can't be certain, but it is possible that she is doing better with her speech than prior to her hospitalization.

Val and I did her 2nd trach change this morning.  We have 6 to do and then need to do a CPR class and a 24 hour stay.  The 24 hour stay at the hospital just means that for 24 hours we will do ALL of her care without help from the nurses.  If we pass the "test" and she is medically stable, we are free to go as long as our house is deemed safe and we have our nursing coverage squared away.  We are hopeful we can get everything taken care of and be home within the next month.

Speaking of home, Val and I are realizing that we most likely will be going back to our current house in Lansdale. While Val hates the commute to work (and worries about  being so far from us during the day), trying to sell and buy a property on a tight timeline is just not possible in this housing market. We will keep our house on the market and hopefully sell soon enough. And THEN we can look again and find something that best meets our current needs.

Samantha has been trying food for the past several days. She is allowed thickened liquids and soft foods.  So far she has enjoyed pudding, mac n cheese, and the occasional sip of chocolate milk.  We've been giving her tiny little bites, and she seems fine.  Within the next week she will have a swallow study just to confirm she is not aspirating anything into her lungs.

One new symptom is that she is losing bicarb so they are supplementing that for her.  They are not sure if it is just a symptom of her mito or if it means she is being over-venalated.  To test the over-venalation theory, they have been lowing her vent settings a little here and there.  Today for the first time they took away her breath rate completely. That means that Samantha is initiating all of her breaths. She still has some pressure support of 8 and a peep of 5, but that is it.  We are still going to bump up her rate to 10 while she sleeps.  But, she happened to fall asleep today without her breath rate and I waited a minute before calling the nurse as she was still doing fine in terms of breaths per minute.  When the nurse came in we were discussing how it doesn't quite make sense that she doesn't need a rate right now.  But, so far today it seems she does not. We allowed her to take the entire nap without a rate. We may trial her off the vent within the next week for short periods just to see how she does.

All in all, she had a pretty good week.

Until next time,


Wednesday, March 16, 2011

Tummy is a bit better :)

Samantha seems to be adjusting well to the new formula and lack of miralax.  Other than an early morning puke yesterday (which may be related to overnight feeds), she has been tolerating things well.  She had a gastric emptying scan on Monday and it did not show anything other than a little bit of reflux.  Her stomach finally looks like hers again and she no longer looks like a balloon.  She had a bowel movement after a suppository this morning and it actually had some consistency to it.   I hate to even type a positive stomach report as I don't want to jinx anything. But for right now stomach issues are better. And, that is a good thing.

Samantha continues to do well with talking. She has tolerated the speaking valve for a couple of brief trials. I am not sure it makes her talk any louder.  But, it may help with trying to eat by mouth later on. So, we will continue to try it.

They are starting to slowly wean the vent settings, which I am concerned about.  I know technically it is a positive step, but I do worry that her "numbers" don't always show the true picture for Samantha. And as she is not QUITE herself yet, I may miss some of Sam's signals that she may not be tolerating the wean well (or perhaps I will attribute something to the wean when it may just be her being tired.)

A few weeks ago her numbers  (o2 and CO2) looked fine a couple of days before she went into respiratory failure.   Hopefully, I will be able to tell if things aren't going well with the wean. And, it is best to try it here rather than when we are outpatient.    It may seem odd that I am wary of lower vent settings. But, as we already went through the trouble of placing a trach, I'd like to use the support of the vent if she needs it (mito is a disease of energy, and the vent spares her some) while she recovers.

Sam had her 2nd trach change yesterday and Val and I watched rather than participate as we didn't feel ready yet. We each need to take out, and place three trachs.  It is difficult to know that I don't have the skills to keep my child alive right now.  But,we hope with time all of this will become second nature and Val and I will be experts in trach care.

In summary, things are going as well as they can right now.  Sam is finally warming up to some of the nurses and hamming it up a bit for them, which is nice to see. She still hates trach care, and I can't say that I blame her.

Until next time,


Friday, March 11, 2011

Squeaking out some words, and some GI blues...

We have all moved to the PCU section of floor 7 here at CHOP.  It seems a little more calm than the PICU. But, otherwise, we are still in the hospital and wanting to be home.  I've dabbled a bit in some trach care the past two days. It is daunting and scary, but I'm hopeful that with time both Val and I will be old pros at it all.

Samantha has been mostly good with one bad thrown in....

Let's talk about good first.  :)

One good is that she is getting some air past her vocal cords and is squeaking out some words. She usually can get a syllable or two out before her little squeak of a voice poops out on her. But, it's sound, and it's hers.   I'm sure with time and perhaps a speaking valve she will continue to improve her speech.  We will also most likely get a communication app for our iPad to help her while she is regaining her speaking voice.  Perhaps we will even teach her some simple signs to help her along.

Yesterday, we ventured into the play room for the first time in her stroller.  It was so great to see her sitting up. Sam is still on some heavy duty drugs. They are weaning the narcotics slowly to avoid withdrawal symptoms. Between the drugs, all of the laying around, and her original motor issues, she is a bit wobbly when trying to be upright.  But progress is definitely being made.  The PT yesterday had me stand her on her bed and she was able to put some weight on her legs.  And, what did she do one she was upright?  The little sweetie, while standing, reached out and gave me a big hug.  Yes, I had tears in my eyes.

In general, she has been much more awake and squirmy while in the bed. And, she has been dazzling her visitors with that adorable smile of hers.

So yes, lots of good is going on.  There is just one problem....

Her GI system does not seem to want to cooperate with, well, we aren't sure. When they run feeds through her G-tube she is distended and very full of gas.  She HAS been passing stools once a day with the help of miralax, colace and the occasional suppository, but they are completely liquid.  Occasionally she has been throwing up her feeds, usually in the morning.  Her labs seem fine, each time they run them. The doctors aren't sure what it is (meds, formula, hospital fear etc)

When she came into the hospital a month ago (yes, today marks a month inpatient), she was eating and drinking by mouth. She didn't always eat as much as she should.  And, she would sometimes go a few days without a bowel movement, but otherwise was ok in terms of GI issues.  She never had formula in her life.  The little stinker never took to a bottle so I just breastfed her until it was time to start eating foods. But, she never had any allergies to food and handled milk, cheese etc fine.

We talked with the GI attending today who agreed to try a new formula for the weekend, Elecare. We are starting it slow and will cut out her miralax.  They had upped her miralax to the max dose while inpatient and perhaps that was just too much for her belly?  We will add suppositories to help with movements.

They plan on doing an emptying scan next week to see if she has delayed gastric emptying. As she just got the G-tube two weeks ago it is too soon to turn it into a GJ tube (for those who don't know, don't ask...I'll explain later if needed). Frankly, I'd like to hold off on any more procedures if we can. I keep thinking this is a g-tube/formula/narcotic issue more than a stomach issue. But, perhaps that is wishful thinking.  I know that mito kids can and do have severe GI issues.  I was just hoping that Sam could escape that for the time being since she has so many other new things to worry about at the moment.  Not to mention, I'd like to try to see her eat regular food (by mouth) before we assume she can't.  Kids with trachs can eat as long as they can swallow safely.  Hopefully we can also do a swallow study and if she is safe to eat certain textures perhaps we can use the tube for supplementing/meds only.

One comment the GI made struck me today.  He mentioned that perhaps Sam always had slow motility but had self regulated her food intake (aka, didn't eat enough) to deal with it.  Once she was in the hospital (and not moving as much and taking lots of narcotics), it might have made an already slow system even slower.  I will concede that his theory may make sense. But I think I, and Sam need more time before we do any other medical procedures.  I want to make sure we aren't moving too fast.

In summary, lots of good with the exception of GI issues.

As always, thanks so much for all of your thoughts, prayers, and vibes.  They are always appreciated.

Until next time,


Tuesday, March 8, 2011

First Trach Change complete

The past week  has been for the most part, uneventful (as compared to weeks prior here in the PICU).  Sam has had a little redness around both her trach and her g-tube stomas.  In addition, she seems to be struggling with much gas/stomach distention.  No one is really sure why her tummy is so distended.  There are so many "new" things going on, it is hard to determine what "new" thing it is causing the issue. She is new to formula feeding.  She is new to her g-tube, her trach, and meds such as morphine and valium.  I'm hopeful the stomach distention is due to the temporary meds, as that will be the easiest thing to get rid of...but only time will tell.

I can't believe it has been a week since Samantha's trach surgery, but it has.  This afternoon was her first trach change, which is a big milestone for Sam, and for us.  Now that it has been changed, hopefully Val and I can begin doing more with Samantha's trach care.  In addition, Sam will be able to move to a portable vent which means she may be able to take rides around the hospital and get out of her bed.  Finally, we may actually be moving out of the PICU into the PCU.  A change of scenery will be nice--even if it is on the same floor.

When they changed her trach today they put a smaller trach in which is a good thing (as long as she continues to tolerate it, that is).  Smaller trach means there can be air flowing up past the trach site to Sam's vocal cords.  You need air to pass your vocal cords in order to make sounds.  This past week Sam hasn't been able to make any sounds as her trach fit too snuggly.  At first she was trying to mouth her words but then realized she wasn't making any sounds.  The past few days she has not tried to mouth words very often.

After they changed her trach today I did hear some noises come from the little sweetie.  It didn't necessarily sound like much, but any sound is a good sound to us!  My hope is that as she moves further away from her surgery, her swelling will go down and hopefully she will be able to vocalize more.  In addition, they have special valves they can place on the trach to allow for kids to speak a little better.  With time we are hoping she will be back to her chatty self in no time.

After we move to the PCU, we will begin our trach training.  Depending on who you ask, it could take anywhere from 4-8 weeks in the hospital.  In addition, Val and I are considering moving during this time to be closer to the hospital and Va's work.  Needless to say it will be a time of great transition no matter where we end up living.

Prior to going to the hospital we had our house on the market, but we took it off the market when we went into the hospital. We want to put it back on the market, but we are trying to figure out where to put our cats while we are here in the hospital.  We don't think showing a house with two kitties roaming about on their own (to track litter and food without mommy's watchful eye) would be a good thing.

Despite the great changes we are going through, we continue to have much support from our family and friends.  Sam continues to get plenty of visitors, and Val and I continue to have plenty to eat.

Thank you again to everyone for everything.  We could not do this alone.

Until next time,


Wednesday, March 2, 2011

She is smiling again....

Samantha is smiling, and imitating, and mouthing words and being silly.

We are loving seeing our girl look more like herself than she has in weeks.

She is my hero.

Until next time,


Tuesday, March 1, 2011

Surgery complete--very brief update

Samantha's surgery went, according to her surgeon, "as well as it could possibly go". She was actually awake for a bit when they brought her back to the PICU and did not seem to be in too much discomfort. She is resting peacefully now. It is very nice to see her face again (without all of the tape of the breathing tube).

The next week will be spent in the PICU, letting Samantha heal. And, her first trach change will be done by the ENTs. After that we will move to a step-down unit and the training will begin. Val and I are ready to start learning about trach care so we can go home.

Thanks as always for all of the support, kind words, and prayers.

Until next time,