These little battles are really wearing on me and Christa. The infection in Nathan's central line is bound to push back his release even farther. The chance of him leaving this week are virtually nil. Because of the delays caused by the wrong formula and the line infection, his formula was just restarted today. They also decided to push back the multivitamin cycling until tomorrow, not sure why.
I want to scream and curse and break something. I want to get more sleep. I want to stop being depressed and angry and sad. I want my family whole again.
I don't need prayers or gifts or well-wishing. I just need my son home.
Tuesday, January 29, 2008
Monday, January 28, 2008
Monday Evening, 1/28/08
Things are still moving forward, but as expected, there have been a couple a minor setbacks.
Last Thursday, the overnight nurse gave Nathan the wrong formula. They normally dilute the canned formula from 30 to 20 (I forget the unit details). In this case, she gave it to him straight from the can and he threw it up later. This caused them to stop his feeds for a couple days while things settled down. To be fair, the department that delivers the formula probably screwed up his order. But I still expect the nursing staff to catch something like this before it gets to him. We've had this type of problem on a few other occasions; it usually ends up with him in the ICU. Fortunately it was nothing too serious this time.
This weekend he developed a low-grade fever. They took blood tests which came back positive for an infection. They believe it it's in his central-line. They are giving him antibiotics to treat the infection, and it shouldn't cause him to miss his planned release date for this Friday.
On a more positive note, they finally stopped his Lovenox shots for the blood clots. This means he can come home without any shots (yay!). They will also begin an attempt at cycling his multivitamin drip starting tomorrow. The plan is to cut it back to 20 hours/day, then down to 16 hours/day if successful. The plan is to try and get him some time at home when he can be free of tubes. Hopefully he'll be able to absorb the multivitamin pills soon and discontinue the multivitamin IV altogether.
Last Thursday, the overnight nurse gave Nathan the wrong formula. They normally dilute the canned formula from 30 to 20 (I forget the unit details). In this case, she gave it to him straight from the can and he threw it up later. This caused them to stop his feeds for a couple days while things settled down. To be fair, the department that delivers the formula probably screwed up his order. But I still expect the nursing staff to catch something like this before it gets to him. We've had this type of problem on a few other occasions; it usually ends up with him in the ICU. Fortunately it was nothing too serious this time.
This weekend he developed a low-grade fever. They took blood tests which came back positive for an infection. They believe it it's in his central-line. They are giving him antibiotics to treat the infection, and it shouldn't cause him to miss his planned release date for this Friday.
On a more positive note, they finally stopped his Lovenox shots for the blood clots. This means he can come home without any shots (yay!). They will also begin an attempt at cycling his multivitamin drip starting tomorrow. The plan is to cut it back to 20 hours/day, then down to 16 hours/day if successful. The plan is to try and get him some time at home when he can be free of tubes. Hopefully he'll be able to absorb the multivitamin pills soon and discontinue the multivitamin IV altogether.
Wednesday, January 23, 2008
Wednesday Evening, 1/23/08
As is typical of late, I'm slow to post updates if things are on a smooth ebb. The staff has slowly increased Nathan's formula intake from the original 1mL/hour to the current rate of 8mL/hour. He has been receiving Octreotide to slow the digestive tract to ease the effects of diarrhea. Regardless, he has had to ordeal plenty of diaper rash. It's not dissimilar to the problems he had with the ostomy leaks, although it's certainly more manageable.
Anyways, on to the good news. It appears that he is absorbing the formula very well and they will be accelerating his rate of feeding. He has been incredibly active, making it difficult for me and Christa to keep up with him at times. At first it was just a matter of keeping up with his running pace. Now he's learned how to pedal his tricycle! He's been having a blast riding around the hospital wings on his Christmas gift. I guess it's a good problem to have, even though it freaks us out having to make sure his tubes don't get tangled up in the wheels.
And just when you thought it couldn't get better...
Nathan ate a potato chip and two cheetos today! I guess this means he'll be ready for Super Bowl festivities with his old man. Seriously, they let him eat a few items to see how he would handle the solid foods. They also gave him some ADEK vitamins (A, D, E and K) that previously passed through his system very quickly. The most recent news is that he seems to be absorbing it, which is really good to hear. There's also rumors going around that they might discontinue the multivitamin drip before he comes home (which should be very soon).
So, that's all I have for tonight. Hopefully I'll have more good news for tomorrow. Is that light I see at the end of the tunnel?
Anyways, on to the good news. It appears that he is absorbing the formula very well and they will be accelerating his rate of feeding. He has been incredibly active, making it difficult for me and Christa to keep up with him at times. At first it was just a matter of keeping up with his running pace. Now he's learned how to pedal his tricycle! He's been having a blast riding around the hospital wings on his Christmas gift. I guess it's a good problem to have, even though it freaks us out having to make sure his tubes don't get tangled up in the wheels.
And just when you thought it couldn't get better...
Nathan ate a potato chip and two cheetos today! I guess this means he'll be ready for Super Bowl festivities with his old man. Seriously, they let him eat a few items to see how he would handle the solid foods. They also gave him some ADEK vitamins (A, D, E and K) that previously passed through his system very quickly. The most recent news is that he seems to be absorbing it, which is really good to hear. There's also rumors going around that they might discontinue the multivitamin drip before he comes home (which should be very soon).
So, that's all I have for tonight. Hopefully I'll have more good news for tomorrow. Is that light I see at the end of the tunnel?
Friday, January 11, 2008
Friday, 1/11/2008
By popular demand, I'm taking time out of my busy schedule (yeah, right) to update the blog this morning. As in the past, I have little to mention when things are slowly improving. There have been no setbacks. They've given him some drugs to slow his system so as to allow time for the intestines to start absorbing. He is getting formula via the G-tube at a current rate of 4ml/hour. They have increased it 1ml/hour every 3 days, but I think that's about to change. The surgeon said last week that he would probably be going home in 2 weeks, but it seems they use a sliding window since the story hadn't changed yesterday.
Anyways, he's doing well. His spirits are fine and Christa is keeping him very active during the days. He enjoys going over to the play room and spending hours on the computer (like father, like son). Don't worry though, he's getting plenty of exercise walking the halls. They even went outside earlier this week and enjoyed the unseasonably warm weather. All in all, things are moving int he right direction.
Anyways, he's doing well. His spirits are fine and Christa is keeping him very active during the days. He enjoys going over to the play room and spending hours on the computer (like father, like son). Don't worry though, he's getting plenty of exercise walking the halls. They even went outside earlier this week and enjoyed the unseasonably warm weather. All in all, things are moving int he right direction.
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