We are still inpatient, but have been on his "regular" floor for 8 days now. Peter is doing very well physically, but the two surgical wounds are not. We tried wet-to-damp dressings for a few days, then silver impregnanted Aquacel, and then on Wednesday, the surgeon decided we needed to go to wound vacs. Peter had two wound vacs placed over the surgical sites on Wednesday evening, and we are here to make sure that they actually do get the wounds to turn around and heal enough to go home. Peter's wounds not only did not heal, but the skin began to open back up and there was yellow slough covering the wound beds, despite measures to keep that under control. Both wounds were producing a fair amount of drainage and ended up opening up all the way down to the fascia in two areas, and each time we would change the dressings (twice a day) the wounds would look the same or worse, no progress.
Dr. Jennings is quite apologetic that the wounds are not healing, feeling like the issue may be as a result of the wound catheters that were used for pain management. He needn't apologize though, as we all thought the wound catheters were a good idea, as a wound catheter is what made Peter have so little pain after his surgery in April. He also mentioned Peter's ascites as possible cause for the wounds to open as they did. Peter has had an abdominal binder on since he was extubated, and his ascites has gone down quite considerably, but for awhile he was HUGE and it was difficult to get the fluid off him. A thirteen hour surgery is a lot on any body, so swelling post-op is expected, but as Peter is so prone to ascites, he stayed big there even once the fluid began to leave the rest of his body.
Peter has healed quite well with his last two surgeries, so there is not a reason to think he will not heal from this one. His liver numbers had a few days of a rise, but they have been trending down nicely over the last two weeks, as has his BUN and creatinine (indicators of kidney health status) which went up a bit right after the surgery. Nutritionally, his TPN has been loaded with extra protein, zinc, and vitamin C. He is on Cipro IV for some bacteria in the wounds, however the bacteria should not have caused this much tissue damage, and is likely due to the probing and poking that was done after we noticed the wounds not healing. Tomorrow, Dr. Jennings will take the vac dressings off and we will get to see what the wounds look like for the first time since Wednesday.
This admission has been hard on Peter. He has been asking to go home for days and days. His daddy came up here with two of his siblings to surprise Peter (and me) over the weekend. The visit was such a boost to Peter's morale! He has been smiling and back to some of his silly antics again, which I really had not seen so much of before their visit. Hopefully there will be huge progress in the wounds when the dressings come off tomorrow, and we can plan our trip home!
Sunday, September 25, 2011
Thursday, September 15, 2011
Still in the ICU but improving
Peter extubated two days ago. His CO2 was high so he needed bi-pap to help him breathe off the CO2. Yesterday he went to just an O2 mask, and today he is on room air. He was playing a little bit in bed today, blowing bubbles and doing a little coloring with markers. It was good to see him smile.
He is going through a little bit of withdrawal from the narcotics he had to keep him sedated while intubated. His pupils were huge yesterday morning and he was quite fidgety, but today he is much more at ease, not needing any narcotics for pain or agitation except once for his dressing change.
He still doesn't realize that the fistula is gone. I tried to tell him today, but it didn't sink in. His abdomen is covered by an abdominal binder, so he doesn't see that there is a dressing there instead of a bag. As he lies down for ostomy bag changes, lying down for a dressing change doesn't seem to be anything different either. He is agitated during the dressing changes post surgery, unlike at home, but othewise, I suppose it all seems the same to him in his current state of mind. It will be interesting to see his reaction when he realizes that the fistula is finally gone.
He is going through a little bit of withdrawal from the narcotics he had to keep him sedated while intubated. His pupils were huge yesterday morning and he was quite fidgety, but today he is much more at ease, not needing any narcotics for pain or agitation except once for his dressing change.
He still doesn't realize that the fistula is gone. I tried to tell him today, but it didn't sink in. His abdomen is covered by an abdominal binder, so he doesn't see that there is a dressing there instead of a bag. As he lies down for ostomy bag changes, lying down for a dressing change doesn't seem to be anything different either. He is agitated during the dressing changes post surgery, unlike at home, but othewise, I suppose it all seems the same to him in his current state of mind. It will be interesting to see his reaction when he realizes that the fistula is finally gone.
Sunday, September 11, 2011
Still intubated
Peter is still intubated, disappointingly. He has accumulated about 5000ml of fluid since surgery, despite conservative measures with his fluid intake, and he is puffy all over. As such, it is not surprising that his lungs have a little fluid on them as well, which is why he is being kept intubated right now. The doctors started him on a Dopamine drip to support the kidney's blood perfusion and gave him albumin and he is now on a Lasix drip.
It is hard to see him lying sedated in the bed with the tubes and vent. He has nine IV pumps going continually, a urine foley, a tube up his nose to drainage, his G-tube attached to a drainage tube, his ileostomy attached to drainage tube. Some of this is his nighttime "usual:" two to three drainage tubes, two to three IVs. The sedation and the vent and his large size are what makes it hard to see him like this, as well as the addition of meds and pumps, instead of their removal. The concern that this was too big of a surgery for him to handle plagues me. I don't regret doing the surgery, and we still feel that it made sense to do this surgery now. This surgery and its risks have been a conversation many times over the years, so the decision was not a hasty one, although the opportunity presented itself unexpectedly.
I have been reassured by everyone who comes in that this is not unusual for such a big operation, even for a healthier child. It is admittedly difficult to not look at him and have flashbacks to his ICU days back in 2006. The priest came to visit him today and said some prayers over him and encouraged me to remember that Peter is not in that same situation and to not worry yet if the doctors have told me that things are still normal. He told me that if Peter pulled through his illness back in 2006, to be hopeful that he will do it again, especially as he is healthier now than he was then.
Please keep Peter in your prayers! Thank you.
It is hard to see him lying sedated in the bed with the tubes and vent. He has nine IV pumps going continually, a urine foley, a tube up his nose to drainage, his G-tube attached to a drainage tube, his ileostomy attached to drainage tube. Some of this is his nighttime "usual:" two to three drainage tubes, two to three IVs. The sedation and the vent and his large size are what makes it hard to see him like this, as well as the addition of meds and pumps, instead of their removal. The concern that this was too big of a surgery for him to handle plagues me. I don't regret doing the surgery, and we still feel that it made sense to do this surgery now. This surgery and its risks have been a conversation many times over the years, so the decision was not a hasty one, although the opportunity presented itself unexpectedly.
I have been reassured by everyone who comes in that this is not unusual for such a big operation, even for a healthier child. It is admittedly difficult to not look at him and have flashbacks to his ICU days back in 2006. The priest came to visit him today and said some prayers over him and encouraged me to remember that Peter is not in that same situation and to not worry yet if the doctors have told me that things are still normal. He told me that if Peter pulled through his illness back in 2006, to be hopeful that he will do it again, especially as he is healthier now than he was then.
Please keep Peter in your prayers! Thank you.
Friday, September 9, 2011
Fistula surgery
The fistula is GONE!! It took thirteen hours in surgery, but it is finally gone!
The intestine which was connected to it was bad tissue. It was leaking chyle and had no necessary function since it was taken out of the GI tract in March. It was continuing to cause sodium imbalances and limited his ability to feed since it seemed to go up in excretion volume as we would increase his feeds. Ultimately, there was no way to continue to increase feeds and get off TPN without removing that intestinal tissue.
Peter was called to surgery at 6:30 am and taken back into the OR at 7:30 am. At 9:15 the first incision was made. There had been a lot of prep work to do before making the incision, but he was already getting sedated at 7:30 am. At about 2:30, Dr. Jennings and Dr. Kamin met with us and Dr. Jennings told us that he could continue to remove the intestinal tissue on the other side of the fistula and then close it, or just stop where he was and close up, knowing that the main source of trouble had been taken out, but with the chance that we could still see problems with that portion of fistula and tissue that was still left. We all agreed that it seemed a good idea to continue while he was doing so well. Dr. Jennings said he was up for continuing the surgery another six to eight hours.
At 8:30 pm, Dr. Jennings came to say that the surgery was finished and Peter's fistula is gone. Peter's abdominal muscles have been moved almost all the way back to midline. (They have been off to his sides since July 2006, when he had abdominal compartment syndrome and the abdominal incision had been left open to heal without being sutured back together.) He lost a liter of blood, which was not much considering he has portal hypertension. Dr. Jennings said his liver looks pretty healthy in color, no nodules and is firm but not hard. We can thank Omegaven for that!
Peter has a ways to go to recover from such a big surgery, but so far he is doing well. We still can't believe that the fistula is actually gone. This should have big potential for his overall recovery to a life without TPN, and for his physical ability too now that his muscles are so much closer to the correct place they should be.
The intestine which was connected to it was bad tissue. It was leaking chyle and had no necessary function since it was taken out of the GI tract in March. It was continuing to cause sodium imbalances and limited his ability to feed since it seemed to go up in excretion volume as we would increase his feeds. Ultimately, there was no way to continue to increase feeds and get off TPN without removing that intestinal tissue.
Peter was called to surgery at 6:30 am and taken back into the OR at 7:30 am. At 9:15 the first incision was made. There had been a lot of prep work to do before making the incision, but he was already getting sedated at 7:30 am. At about 2:30, Dr. Jennings and Dr. Kamin met with us and Dr. Jennings told us that he could continue to remove the intestinal tissue on the other side of the fistula and then close it, or just stop where he was and close up, knowing that the main source of trouble had been taken out, but with the chance that we could still see problems with that portion of fistula and tissue that was still left. We all agreed that it seemed a good idea to continue while he was doing so well. Dr. Jennings said he was up for continuing the surgery another six to eight hours.
At 8:30 pm, Dr. Jennings came to say that the surgery was finished and Peter's fistula is gone. Peter's abdominal muscles have been moved almost all the way back to midline. (They have been off to his sides since July 2006, when he had abdominal compartment syndrome and the abdominal incision had been left open to heal without being sutured back together.) He lost a liter of blood, which was not much considering he has portal hypertension. Dr. Jennings said his liver looks pretty healthy in color, no nodules and is firm but not hard. We can thank Omegaven for that!
Peter has a ways to go to recover from such a big surgery, but so far he is doing well. We still can't believe that the fistula is actually gone. This should have big potential for his overall recovery to a life without TPN, and for his physical ability too now that his muscles are so much closer to the correct place they should be.
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