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,
Monica
If she has been on pain meds... like morphine, that could be the cause for her distension. I know that for Quinn, morphine slows her down so bad that it takes days to get it working again. So sorry about all that Sam has had to to through lately. I really hope everything goes smoothly from here so you can take your sweet girl home. Thamks for the update. Thinking and praying for you guys every day.
ReplyDeleteThinking of all of you.
ReplyDeleteThinking of you guys still!! I hope you get out on the sooner side of that time frame! What formula is she on? Could that be causing some stomach issues? You guys have a lot going on and lots to think about/tweak/etc. I'll be praying daily.
ReplyDeleteHeather
changing a trach is pretty easy once you do it a few times! this is a GREAT site for trachs :) http://www.tracheostomy.com/
ReplyDeleteAlways in our thoughts.
ReplyDelete