Yesterday during the day was a pretty good day! Muriel played, had a visit from the music therapist, and ate pickles and olives. Both are high sodium foods, but oops the olives had fat! Dr. Sajan said Muriel "has turned the corner". Woo hoo!
Friday, September 20, 2013
Thursday, September 19, 2013
3rd day post-op
Things are definitely starting to look up for little Muriel. She lost her right side chest tube this morning, after a night of very little drainage. The left side is also nearly dry, but will stay for at least another day. She was awake most of the morning and did a good job eating. She is talking and seeming more herself. I've been out of the room most of the day trying to catch up on some work, so am missing some details at the moment. I'll post again tonight. Just don't want folks to think we have forgotten them. Seems quite a few people are following progress this way, and I can't be letting you down!
Wednesday, September 18, 2013
2nd night post-op
Another fairly quiet day here at Advocate Children's Hospital, PSHU, bed 9. Muriel again slept most of the day, but when awake much more alert. Her chest tube drainage is *way* down. Dr. Ilbawi mentioned we may remove one of them tomorrow. The fluid is also very clear. There seems to be no sign of the milky "Chyle" we were concerned with last week, though we will continue the no-fat diet anyway, just to be safe. Literally *anything* we can do to avoid her accumulating fluid again we will be doing.
Muriel ate well this evening for the first time in several weeks. We were able to get some chicken breast, rice, yogurt, and a (very) little bit of mashed potatoes to go down without coming back up, in addition to a very salty (!) bit of applesauce. I tried to hide the sodium supplement in the mashed potatoes again, which worked last night, but she would have none of it tonight. Why she would eat salty applesauce instead I have absolutely no idea.
She has become constipated again. Poor nurse Sarah was again interrupted during her dinner (!) to utilize her, umm, small fingers for a task suited well for them. That was successful, but we are now back on softeners to help out while her diuretics are up again.
Muriel got an "echo" (ultrasound) test today and all her plumbing was pronounced working in good order. Dr. Sajan was very happy with it in fact.
All in all it was a good day, and I do believe we can say she has "turned the corner" - an actual quote from Dr. Sajan, who I don't believe would say such a thing without truly believing it. I think we will start seeing a number of things shut down and removed tomorrow.
I realized just now that every picture of Muriel for the past several days, though cute, are all of her passed out. We will endeavor to get a picture of her awake and post it tomorrow. Sorry I haven't added many pictures to my posts lately. My poor phone, which was inadvertently soaked in red wine several weeks ago, is really on its last legs. Basically reliant on Megan's phone for pics, which is why you have seen her posting them lately. Works for me.
Muriel ate well this evening for the first time in several weeks. We were able to get some chicken breast, rice, yogurt, and a (very) little bit of mashed potatoes to go down without coming back up, in addition to a very salty (!) bit of applesauce. I tried to hide the sodium supplement in the mashed potatoes again, which worked last night, but she would have none of it tonight. Why she would eat salty applesauce instead I have absolutely no idea.
She has become constipated again. Poor nurse Sarah was again interrupted during her dinner (!) to utilize her, umm, small fingers for a task suited well for them. That was successful, but we are now back on softeners to help out while her diuretics are up again.
Muriel got an "echo" (ultrasound) test today and all her plumbing was pronounced working in good order. Dr. Sajan was very happy with it in fact.
All in all it was a good day, and I do believe we can say she has "turned the corner" - an actual quote from Dr. Sajan, who I don't believe would say such a thing without truly believing it. I think we will start seeing a number of things shut down and removed tomorrow.
I realized just now that every picture of Muriel for the past several days, though cute, are all of her passed out. We will endeavor to get a picture of her awake and post it tomorrow. Sorry I haven't added many pictures to my posts lately. My poor phone, which was inadvertently soaked in red wine several weeks ago, is really on its last legs. Basically reliant on Megan's phone for pics, which is why you have seen her posting them lately. Works for me.
2nd morning post-op
First of all my apologies for not posting yesterday. I simply needed a break. It was a very quiet day actually - Muriel slept most of it, waking up for a few minutes at a time to get a drink, cough up some phlegm, or express her disdain at having so many things tieing her to the bed, again.
This morning not much has changed. No pumps off yet, no tubes gone yet. Her latest xray, as of early this morning, shows her left lung a little worse than yesterday. Some fluid accumulation (which I don't quite understand, given the chest tube is there), and the lung overall is hazy. Left side chest tube output is still pretty high - over 200ml yesterday. Other than noting it the staff didn't seem overly concerned. Dr. Sajan made a point to tell me that they don't expect the drainage to stop for another few days, and not to worry.
She was awake when I arrived just after 8AM, and coughing. She has had this cough since surgery - seems she can't quite get rid of some congestion in her upper airways. The coughing clearly hurts her, and is painful to watch. After sleeping she tends to cough for a few minutes and is then better, and is ready to eat or drink something. Mainly clear liquids so far, though I did manage to get some rice and HEAVILY salted mashed potatoes (yup - sodium levels are starting to freefall again) into her, and some yogurt this morning.
She is still sedated round the clock. Drugs this time 'round are phenobarbitol and loritab (basically tylenol with codine). She isn't quite as out of it as she was with the atavan, but she is certainly sleeping a lot.
Other than the congestion, the sodium levels, and the darn chest tube drainage she looks very good, according to the staff. Its still pretty early after surgery, and I think it is hard to keep that in mind, given that we have been here nearing three weeks. I wouldn't have expected her to be packed and ready to go two days after her last surgery, so I have to keep reminding myself that she needs a bit of time to recover. Mentally this is really so hard - I'm drained.
She is supposed to get her foley catheter out today, so lets hope this is the start of seeing lots of things disappear, again. I'll take a pic when it happens and post later today.
This morning not much has changed. No pumps off yet, no tubes gone yet. Her latest xray, as of early this morning, shows her left lung a little worse than yesterday. Some fluid accumulation (which I don't quite understand, given the chest tube is there), and the lung overall is hazy. Left side chest tube output is still pretty high - over 200ml yesterday. Other than noting it the staff didn't seem overly concerned. Dr. Sajan made a point to tell me that they don't expect the drainage to stop for another few days, and not to worry.
She was awake when I arrived just after 8AM, and coughing. She has had this cough since surgery - seems she can't quite get rid of some congestion in her upper airways. The coughing clearly hurts her, and is painful to watch. After sleeping she tends to cough for a few minutes and is then better, and is ready to eat or drink something. Mainly clear liquids so far, though I did manage to get some rice and HEAVILY salted mashed potatoes (yup - sodium levels are starting to freefall again) into her, and some yogurt this morning.
She is still sedated round the clock. Drugs this time 'round are phenobarbitol and loritab (basically tylenol with codine). She isn't quite as out of it as she was with the atavan, but she is certainly sleeping a lot.
Other than the congestion, the sodium levels, and the darn chest tube drainage she looks very good, according to the staff. Its still pretty early after surgery, and I think it is hard to keep that in mind, given that we have been here nearing three weeks. I wouldn't have expected her to be packed and ready to go two days after her last surgery, so I have to keep reminding myself that she needs a bit of time to recover. Mentally this is really so hard - I'm drained.
She is supposed to get her foley catheter out today, so lets hope this is the start of seeing lots of things disappear, again. I'll take a pic when it happens and post later today.
Steady as she goes...
Muriel has been resting comfortably today and tonight. She has a fair amount of congestion in her lungs that she needs to cough up, but she has pain when she coughs from her incision so she does not enjoy coughing. Hopefully she will get it out to avoid suction, which I know she will hate. Her sodium is at 128 and needs to go up. Jeff fed her a few bites of mashed potato with sodium supplement on top. I think that went down better than salty applesauce. Duh, huh? She is on higher doses of heparin to thin her blood and avoid clotting until Coumadin can get started. All together a pretty good day.
Tuesday, September 17, 2013
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