Peter's PICC line has unfortunately dislodged on us... Sunday afternoon... two days before New Year's Day.
Peter was getting his usual PICC dressing change on his usual day, Sunday. But he decided that he had had enough of the dressing change faster than we could stop him from moving, and the PICC line moved out of its insertion site about an inch. The look on my face told the other children that things were not good and then I burst into tears. I called Dr. Kamin in Boston to see if he thought it had moved too far. He said we should get an x-ray to determine if the PICC had moved too far out. The local hospital said they didn't want to x-ray Peter because they didn't have a radiologist in house... Sunday afternoon... and they don't usually do children.
Long story made short, we ended up going to CHOP's ER. We got an x-ray taken about two hours after we got there and were told the PICC had indeed moved too far to use for TPN... could end up throwing a clot. Lots of phone calls to Dr. Kamin in Boston(what a dedicated doctor!) and talks with the ER and ER calling Interventional Radiology... go to Boston's IR? ,go inpatient at CHOP?, need a transfusion?, will anyone get worked up about Peter's current anemia (normal for him, but still abnormal), etc. So we drew a CBC just to see where that was and behold he was 8.2, up from the week before, so no transfusion! Boston was expecting 8 inches of snow, so that answered the question of driving up there from PA. And IR was double-booked for the entire next day and closed for New Year's Day, so it was pointless to stay in hospital... and actually we were glad to hear that, so it made the decision easy to come home and wait for an available IR appointment.
Now Peter is home on a make-shift concoction of electrolytes and sugar in IV form until he gets a new PICC placed this Wednesday at CHOP. Fortunately it should be able to be done outpatient and he should be in and out within about three to four hours from arrival to departure. The procedure should quick once he is in there, with light sedation, no intubation expected.
Peter has had this PICC line since October 2006, so I guess we can't complain too much. The timing stunk, but at least it didn't happen on Christmas!
Monday, December 31, 2007
Wednesday, December 19, 2007
Still improving
Peter still gets weekly labs, but his PICC line makes it painless for him. I always spend the rest of the day fretting about what the numbers will be. Usually hemoglobin is the main worry, as he continues to have bleeds from the fistula off and on. When his hemoglobin gets down to 7.0 or so he needs to get another blood transfusion.
This week the worry was more about what the other numbers would be, since last week's hemoglobin was 9.0 and he usually doesn't drop down to 7 within a week. Last week he showed us that he was holding onto fluid and that threw his albumin and sodium off, and he had some fluid building up in his legs. It seems that his fistula is not putting out as much fluid lately... which is a good sign, but in return we ended up needing to decrease the amount of replacement fluid we've been giving him.
The results of this week's labs are back. This week we seem more balanced in the fluid department and albumin is back up to 2.4 (still low, but better than 2.0) and sodium is normal. Direct bili stayed at 1.2 this week, as it did last week, and the total bili went up to 2.1 from 1.9. The discussion is whether this is due to addition of plain yogurt or not. We have been giving small amounts of milk as desired for months and thought the yogurt would also be alright, but we are going to cut it back from 3 to 5 tsp daily to just 1 tsp daily. Hopefully the bili's will continue to go downward consistently as they had been. Dr. Puder reminds us to be patient and not change things enterally until the direct bili gets to around 0.4.
The hemoglobin this week is 8.4, so if we can keep bleeds at bay, maybe we can avoid transfusing during Christmas week too. The fistula bleeds so much due to irritation and due to clotting ability still not being normal. That should improve as the liver improves. We are also experimenting with different ostomy products with the help of Children's Boston wound care nurse and some of our own trial and error. The fact that Peter is able to keep any ostomy appliance on his abdomen at all is quite remarkable - a good advertisement for the Convatec company indeed. He just folds himself right in half when he wants to get onto his tummy, and that is exactly where the fistula and that one ostomy appliance are. (He has two other ostomy bags too, but they don't get quite as taxed as they are more off to the sides.)
Peter knows his entire alphabet at age two and one month. He still doesn't talk, but you can ask him any letter and he'll find it. He learned the letters in about 3 months. Dr. Puder says the Omegaven babies seem to be very bright. I don't know if it is the Omegaven or the one-on-one care that he gets with home nursing. Regardless, knowing the alphabet at an early two years of age is definitely worth bragging about, even if Peter isn't walking or talking yet!
And though I don't write about it in every post, I never forget that the true source of all of Peter's progress, and our strength, is our good Lord. God is good and we are ever grateful. Merry Christmas to all of you who take the time to keep up with Peter's news.
This week the worry was more about what the other numbers would be, since last week's hemoglobin was 9.0 and he usually doesn't drop down to 7 within a week. Last week he showed us that he was holding onto fluid and that threw his albumin and sodium off, and he had some fluid building up in his legs. It seems that his fistula is not putting out as much fluid lately... which is a good sign, but in return we ended up needing to decrease the amount of replacement fluid we've been giving him.
The results of this week's labs are back. This week we seem more balanced in the fluid department and albumin is back up to 2.4 (still low, but better than 2.0) and sodium is normal. Direct bili stayed at 1.2 this week, as it did last week, and the total bili went up to 2.1 from 1.9. The discussion is whether this is due to addition of plain yogurt or not. We have been giving small amounts of milk as desired for months and thought the yogurt would also be alright, but we are going to cut it back from 3 to 5 tsp daily to just 1 tsp daily. Hopefully the bili's will continue to go downward consistently as they had been. Dr. Puder reminds us to be patient and not change things enterally until the direct bili gets to around 0.4.
The hemoglobin this week is 8.4, so if we can keep bleeds at bay, maybe we can avoid transfusing during Christmas week too. The fistula bleeds so much due to irritation and due to clotting ability still not being normal. That should improve as the liver improves. We are also experimenting with different ostomy products with the help of Children's Boston wound care nurse and some of our own trial and error. The fact that Peter is able to keep any ostomy appliance on his abdomen at all is quite remarkable - a good advertisement for the Convatec company indeed. He just folds himself right in half when he wants to get onto his tummy, and that is exactly where the fistula and that one ostomy appliance are. (He has two other ostomy bags too, but they don't get quite as taxed as they are more off to the sides.)
Peter knows his entire alphabet at age two and one month. He still doesn't talk, but you can ask him any letter and he'll find it. He learned the letters in about 3 months. Dr. Puder says the Omegaven babies seem to be very bright. I don't know if it is the Omegaven or the one-on-one care that he gets with home nursing. Regardless, knowing the alphabet at an early two years of age is definitely worth bragging about, even if Peter isn't walking or talking yet!
And though I don't write about it in every post, I never forget that the true source of all of Peter's progress, and our strength, is our good Lord. God is good and we are ever grateful. Merry Christmas to all of you who take the time to keep up with Peter's news.
Thursday, December 6, 2007
Inactivated on transplant list!!
We went up to Children's Hospital Boston for our very first outpatient visit! And we drove for the first time too! We live seven hours away from Boston, so it is quite a drive. Peter did amazingly well. We have previously had to go up via Medflight due to Peter's difficulty in travelling in a car without getting beside himself - never knowing if it was something wrong or a simple tantrum or what. Up until August he didn't ride in a carseat, but rather a make-shift car bed. So, seven hours in a carseat with only one long stop, and very few tears or complaints. Who could ask for more?
Dr. Kim, Dr. Kamin, Dr. Puder, and Dr. Lo all came in to see Peter. Everyone commented on how good he looks. And we have decided to make him inactive on the transplant list... the urgency for transplant seems to be gone. The liver injury appears to be halted, possibly reversing. With the liver cooperating now, we don't expect that he will suddenly nose-dive into illness as he would do if he were still declining in health of the liver. This is really amazing. There have been about 70 children pull out of liver injury on Omegaven at Children's Boston. We expect that Peter will follow in their tracks and continue in his improvement. He is apparently the first child to pull out of/halt the liver injury who has been as sick as he was for as long as he was.
We still have the bowel issues to deal with. We don't know if the bowel will work well enough to eventually come off TPN, but with the inflammation to the liver gone, we can soon begin to test the bowel. Since we don't know that the bowel will work, and we don't know if surgery to reconnect the bowel will be successful, and because Peter's liver was so sick for so long, we are for now just inactivating him. I have officially unpacked my bags that have been packed since August for when the transplant call came. We are a little nervous about our decision, but deep inside it seems right. Peter acts like he feels the best he has ever felt. He looks good and labs are good. We continue to pray and we thank God every day for his happy little self.
Dr. Kim, Dr. Kamin, Dr. Puder, and Dr. Lo all came in to see Peter. Everyone commented on how good he looks. And we have decided to make him inactive on the transplant list... the urgency for transplant seems to be gone. The liver injury appears to be halted, possibly reversing. With the liver cooperating now, we don't expect that he will suddenly nose-dive into illness as he would do if he were still declining in health of the liver. This is really amazing. There have been about 70 children pull out of liver injury on Omegaven at Children's Boston. We expect that Peter will follow in their tracks and continue in his improvement. He is apparently the first child to pull out of/halt the liver injury who has been as sick as he was for as long as he was.
We still have the bowel issues to deal with. We don't know if the bowel will work well enough to eventually come off TPN, but with the inflammation to the liver gone, we can soon begin to test the bowel. Since we don't know that the bowel will work, and we don't know if surgery to reconnect the bowel will be successful, and because Peter's liver was so sick for so long, we are for now just inactivating him. I have officially unpacked my bags that have been packed since August for when the transplant call came. We are a little nervous about our decision, but deep inside it seems right. Peter acts like he feels the best he has ever felt. He looks good and labs are good. We continue to pray and we thank God every day for his happy little self.
Subscribe to:
Posts (Atom)
