We had labs drawn today at the hospital and they came back great. Creatinine is 0.7, prograf is 8.2 (target is 8-10.) Her blood pressure was good when the nurse was here to change the dressing on the PICC line today. The dressing change was a little traumatic but she made it through.
According to the nurse, Dr. M wants the PICC left in place until we get a clean urine culture after the end of the abx, which is a really good idea. So tomorrow we need to call peds at home (the nursing service) and have them give us care instructions for after we're finished with the abx.
I'm also waiting to hear from Dr. M if she wants Katie to go back to school on the 12th when her current "certification for home and hospital" expires, or if she wants to keep her out longer. I'm on the fence. I'd like to have a clean culture before we make that decision but that may be cutting it too close since those culture results won't be back until the 9th.
Monday, December 29, 2008
Thursday, December 25, 2008
Merry Christmas!
Just wanted to wish everyone a very Merry Christmas even though it's late in the day. We've had a nice day. Katie is a little bothered by a few things but all in all she's doing very well and is of course happy to be celebrating Christmas at HOME.
Wednesday, December 24, 2008
Another update
I'm sorry to go so long between updates, we couldn't get the internet to work in her room anymore and the computers in the Ronald McDonalds house room were busy most of the time.
Sunday 12/21/08
Last night (Saturday night 12/20), sometime before 3 Katie's IV pump beeped with a message of "infusion complete." This usually means that the nurse didn't keep track of her pumps and how much time they had left so that she could get in and reset it without waking her patient. So when it beeped again around 3 I was annoyed, I didn't even look at what it said I just pushed the nurse call button (which we almost never do.) Well it said "patient side occluded." Sometimes that just means she needs to kind of shake out her hand or straighten it and then the pump needs reset. This time... not so much... the part that goes inside of her vein had backed out and was in the shape of a Z, so it was ruined. So I got up to start negotiating on Katie's behalf to not restick her right then in the middle of the night. I figured since her next abx dose was due at 5am and her Prograf level blood draw was due at 6:45 that we make the abx a little late and just do one stuck and wait until 6:45 to do it, particularly since her fluids were due to be discontinued today anyway. I had to argue a bit ut we got there.
Two residents showed up at 7:15 (grrr) and missed the first stick all together. So I agreed to let them just do a regular blood draw so that her Prograf level wouldn't be any later than it already was and we would regroup. The resident doing the sticking was clearly "done" because after the blood draw stick (which was thisclose to going badly) she said "well I'm off duty now so another resident will be back to try again later." Oh, nice, sorry to have bothered you. One of the nurses on the floor had been following along with us and had help me convince them about delaying the orginal restick, and she asked to try to put another IV in, and I let her... that one "blew." When you place in IV you check it by using a syringe of normal saline to "flush" the line, if it flushes and flushes easily then you have a good IV. If it's hard to flush it's a bad IV, or you see a bump form under the skin as you flush it's "blown" and the fluid is now collecting under the skin instead of going through the vein. At this point we had a freshly lost IV site in the left hand, a failed IV placement attempt in the right arm inside the elbow, a fresh blood draw site in the left arm inside the elbow and a freshly blown IV site in the left hand (yes that's two in the left hand because we're trying to keep her able to do crafts.) So we asked for a PICU nurse as usually they’re more skilled and experienced at placing IVs in kids and babies. Later, at close to 9, a very nice, experienced, skilled PICU nurse came over. Getting another IV placed was really hard on Katie because that left hand is so sore, and she cried and cried, but we got it in and if flushed beautifully. We had a small snafu with it not being tightened together strongly enough but we held it together, cut away some of the tape and retaped it.
And that’s where we are. Her antibiotics schedule is now 9am and 9pm which is actually a good time schedule to go home with and it makes it more likely that we can get sprung tomorrow afternoon since the next dose won’t be due until 9pm.
Childlife is supposed to come by any time now to talk to Katie about the PICC placement process. I hope I won’t have any more updates for you until tomorrow afternoon.
Wednesday 12/24:
Let me bring up to date from where I left off above...
Lisa from Childlife did come by to talk to Katie about the PICC placement. Sunday night was uneventful thankfully. Katie's left hand was very sore from all of the sticks, her original IV was there, then the blown IV attempt was there, and the replacement IV was there also.
Monday came around and we were told we would go down for the PICC at 10:30, and our nurse already knew that we needed childlife and had notified them of the time. At 10:15 Marisa from childlife came to our room. At 10:20 the sedation nurses came in to put EMLA (numbing cream) on Katie's arm to help with her not feeling the lidocaine sticks. At 10:25 the doctor team arrived. I told them we were due to leave shortly but they came in anyway. I had a rather fun moment with them though. They had a new (new to us not a new doctor) pediatric attending with them. The resident assigned to Katie was doing her report and when she read Katie's input and output from the day before it was "off" saying that she had peed more than 2 liters more than she had drunk (drank?) So the attending stopped her and was asking questions, among them was "what was her underlying original kidney disease." The resident said something like "unilateral kidney agenesis" which firstly doesn't answer the questions and secondly is odd phrasing. The attending looked at her and looked at me (I was behind the resident) and said "even Mom is behind you giggling." I was hysterical inside! I helped them along with some info but then I kind of cut them off saying that I was concerned we would lose our spot downstairs for the PICC placement.
When we got downstairs and Marisa walked off with Katie... that was tough! She left us at almost exactly 11am. Since the sedation nurses had told us that the entire procedure from prep to clean up takes 1 hour so when the clock struck 12 noon I started to panic. I asked Steve how long I had to wait before I could officially worry and he said 15 minutes. During that 15 minutes I was of course imagining the worst. (I don't think I mentioned on here about the "code" that took place in the ER when we were there. A code is short for code blue when someone's heart has stopped beating and an entire team of people responds to try to revive the person. The event in the ER had the worst possible outcome.) I was pacing the hallways down near IR asking Steve if they always announced throughout the hospital when there is a code as they had done in the ER that day (and I'd heard another one announced since then too.) At 12:15 I went to the desk in the waiting area to ask for a status. The girl called someone and quickly hung up the phone saying that Katie was still in the procedure, but that wasn't good enough for me I wanted to know what the delay was, she gave me possible reasons but those were just possibilities that could happen I wanted to know what the delay was with MY child. She sent us down to the IR office but the doors to go in there were locked so we paced for a few more minutes and someone saw us and asked if they could help. She knew that they were just getting ready to bring her out of the procedure room so we waited. She was crying when she came out but she stopped quickly when she saw us. We hung out in the little recovery room for a bit then went back to her room. She was in pretty good spirits and happy that nothing had hurt during or after the procedure. Later it got pretty sore and still itches her quite a bit at times.
Not long after we got back from there we were told that we weren't going home that day. Dr. M had decided since we were due for her next cytogam infusion on tuesday that we should just stay and have that done as an inpatient and then head home. I was concerned about the floor having the right tools to do the cytogam, and I was concerned that the nurses would have time to do what needed to be done. The cytogam has to be filtered and run in particular tubing, and it gets run at 3 different rates changing every half hour, and vitals have to be taken every half hour. The attending told us how all of those things would be handled, and oh how I wished she was right... but she wasn't. It eventually all got worked out but of course there was stress involved for me. We had also asked the attending to please be sure our discharge papers were ready by the time we were done, and they were but not without some additional prodding from us and and our nurse.
In the end we left the hospital around 12:30. When we got in the car we called up to the middle school and told them we needed to pick James up early. We swung by there on our way home and all four of us got home around 1:30 or so.
The nurse came by that evening to teach us how to administer the meds at home. It was pretty invasive with lots of questions but we got through it.
This afternoon we went to our home church for 2 Christmas Eve services, the first family service with candlelight and communion, and then the children's service that Steve usually plays guitar for. Now we're home enjoying some quiet family time.
Thanks again for everyone's thoughts and prayers.
Sunday 12/21/08
Last night (Saturday night 12/20), sometime before 3 Katie's IV pump beeped with a message of "infusion complete." This usually means that the nurse didn't keep track of her pumps and how much time they had left so that she could get in and reset it without waking her patient. So when it beeped again around 3 I was annoyed, I didn't even look at what it said I just pushed the nurse call button (which we almost never do.) Well it said "patient side occluded." Sometimes that just means she needs to kind of shake out her hand or straighten it and then the pump needs reset. This time... not so much... the part that goes inside of her vein had backed out and was in the shape of a Z, so it was ruined. So I got up to start negotiating on Katie's behalf to not restick her right then in the middle of the night. I figured since her next abx dose was due at 5am and her Prograf level blood draw was due at 6:45 that we make the abx a little late and just do one stuck and wait until 6:45 to do it, particularly since her fluids were due to be discontinued today anyway. I had to argue a bit ut we got there.
Two residents showed up at 7:15 (grrr) and missed the first stick all together. So I agreed to let them just do a regular blood draw so that her Prograf level wouldn't be any later than it already was and we would regroup. The resident doing the sticking was clearly "done" because after the blood draw stick (which was thisclose to going badly) she said "well I'm off duty now so another resident will be back to try again later." Oh, nice, sorry to have bothered you. One of the nurses on the floor had been following along with us and had help me convince them about delaying the orginal restick, and she asked to try to put another IV in, and I let her... that one "blew." When you place in IV you check it by using a syringe of normal saline to "flush" the line, if it flushes and flushes easily then you have a good IV. If it's hard to flush it's a bad IV, or you see a bump form under the skin as you flush it's "blown" and the fluid is now collecting under the skin instead of going through the vein. At this point we had a freshly lost IV site in the left hand, a failed IV placement attempt in the right arm inside the elbow, a fresh blood draw site in the left arm inside the elbow and a freshly blown IV site in the left hand (yes that's two in the left hand because we're trying to keep her able to do crafts.) So we asked for a PICU nurse as usually they’re more skilled and experienced at placing IVs in kids and babies. Later, at close to 9, a very nice, experienced, skilled PICU nurse came over. Getting another IV placed was really hard on Katie because that left hand is so sore, and she cried and cried, but we got it in and if flushed beautifully. We had a small snafu with it not being tightened together strongly enough but we held it together, cut away some of the tape and retaped it.
And that’s where we are. Her antibiotics schedule is now 9am and 9pm which is actually a good time schedule to go home with and it makes it more likely that we can get sprung tomorrow afternoon since the next dose won’t be due until 9pm.
Childlife is supposed to come by any time now to talk to Katie about the PICC placement process. I hope I won’t have any more updates for you until tomorrow afternoon.
Wednesday 12/24:
Let me bring up to date from where I left off above...
Lisa from Childlife did come by to talk to Katie about the PICC placement. Sunday night was uneventful thankfully. Katie's left hand was very sore from all of the sticks, her original IV was there, then the blown IV attempt was there, and the replacement IV was there also.
Monday came around and we were told we would go down for the PICC at 10:30, and our nurse already knew that we needed childlife and had notified them of the time. At 10:15 Marisa from childlife came to our room. At 10:20 the sedation nurses came in to put EMLA (numbing cream) on Katie's arm to help with her not feeling the lidocaine sticks. At 10:25 the doctor team arrived. I told them we were due to leave shortly but they came in anyway. I had a rather fun moment with them though. They had a new (new to us not a new doctor) pediatric attending with them. The resident assigned to Katie was doing her report and when she read Katie's input and output from the day before it was "off" saying that she had peed more than 2 liters more than she had drunk (drank?) So the attending stopped her and was asking questions, among them was "what was her underlying original kidney disease." The resident said something like "unilateral kidney agenesis" which firstly doesn't answer the questions and secondly is odd phrasing. The attending looked at her and looked at me (I was behind the resident) and said "even Mom is behind you giggling." I was hysterical inside! I helped them along with some info but then I kind of cut them off saying that I was concerned we would lose our spot downstairs for the PICC placement.
When we got downstairs and Marisa walked off with Katie... that was tough! She left us at almost exactly 11am. Since the sedation nurses had told us that the entire procedure from prep to clean up takes 1 hour so when the clock struck 12 noon I started to panic. I asked Steve how long I had to wait before I could officially worry and he said 15 minutes. During that 15 minutes I was of course imagining the worst. (I don't think I mentioned on here about the "code" that took place in the ER when we were there. A code is short for code blue when someone's heart has stopped beating and an entire team of people responds to try to revive the person. The event in the ER had the worst possible outcome.) I was pacing the hallways down near IR asking Steve if they always announced throughout the hospital when there is a code as they had done in the ER that day (and I'd heard another one announced since then too.) At 12:15 I went to the desk in the waiting area to ask for a status. The girl called someone and quickly hung up the phone saying that Katie was still in the procedure, but that wasn't good enough for me I wanted to know what the delay was, she gave me possible reasons but those were just possibilities that could happen I wanted to know what the delay was with MY child. She sent us down to the IR office but the doors to go in there were locked so we paced for a few more minutes and someone saw us and asked if they could help. She knew that they were just getting ready to bring her out of the procedure room so we waited. She was crying when she came out but she stopped quickly when she saw us. We hung out in the little recovery room for a bit then went back to her room. She was in pretty good spirits and happy that nothing had hurt during or after the procedure. Later it got pretty sore and still itches her quite a bit at times.
Not long after we got back from there we were told that we weren't going home that day. Dr. M had decided since we were due for her next cytogam infusion on tuesday that we should just stay and have that done as an inpatient and then head home. I was concerned about the floor having the right tools to do the cytogam, and I was concerned that the nurses would have time to do what needed to be done. The cytogam has to be filtered and run in particular tubing, and it gets run at 3 different rates changing every half hour, and vitals have to be taken every half hour. The attending told us how all of those things would be handled, and oh how I wished she was right... but she wasn't. It eventually all got worked out but of course there was stress involved for me. We had also asked the attending to please be sure our discharge papers were ready by the time we were done, and they were but not without some additional prodding from us and and our nurse.
In the end we left the hospital around 12:30. When we got in the car we called up to the middle school and told them we needed to pick James up early. We swung by there on our way home and all four of us got home around 1:30 or so.
The nurse came by that evening to teach us how to administer the meds at home. It was pretty invasive with lots of questions but we got through it.
This afternoon we went to our home church for 2 Christmas Eve services, the first family service with candlelight and communion, and then the children's service that Steve usually plays guitar for. Now we're home enjoying some quiet family time.
Thanks again for everyone's thoughts and prayers.
Monday, December 22, 2008
Update 12/22/08
I wish I could tell you that today was smooth and Katie is home but, those would both be untrue.
ChildLife did come by yesterday (Sunday) to talk to Katie about the PICC placement process, and by the time she left we had lots of ways to reach someone to go down with us today. Even so when our daytime nurse stopped by this morning I mentioned it to her and she already knew and it was all lined up. She came by a bit later and said we would be going down at 10:30 and that Marisa from ChildLife had already been told. At 10:30 the sedation nurses from IR came up and put EMLA (numbing cream) on Katie's arm and said she didn't need to come down until 10:45 which worked out well as the team was just about to "round."
The whole team came in with a new peds attending that we hadn't met before. A resident gave report on Katie and when she got to intake and output and the numbers were off so the attending started asking the resident questions. Here's where it got fun for me. The attending asked what Katie's underlying kidney disease had been originally. The resident said "unilateral kidney agenesis" and I must have made a face that reflected my thought which was "that doesn't answer the question." The attending agreed, told the resident that, and then said "even Mom is giggling behind you." I wish I could have laughed out loud the way I wanted to. The resident got drilled a little more and then the attending asked me to answer her questions. A bit further in the conversation they were talking about increasing Katie's fluids and I mentioned that that concerns me because of her bladder being man-made. Later in the afternoon the attending came by again and mentioned how astute I was to bring that up because that was indeed one of Dr. M's concerns about increasing Katie's fluids also.
And thus ended the bright spots of the day.
We went downstairs to IR, Katie's face was full of fear when she had to leave us but we did our best to put on brave faces. We had been told the procedure would take an hour including sedation and prep and dressings and such. She went in at 11 so at 12 I started to panic. Steve made me wait until 12:15 before we said anything. We asked at the desk and the girl dialed the phone asked about Katie and hung up and said "she's still in the procedure." I said "but you didn't ask if there was a problem or complication or another reason they were going long." She spouted possible reasons they could have taken longer than expected. I said "well those are theories and not the actual reason that *my* child's procedure isn't over yet." She tried to direct us down to the IR area (that was a general radiology area I think) but we couldn't follow her directions, luckily someone saw us and asked if we needed help. She knew that they were just finishing up with Katie so we were right there when they wheeled her out of the procedure room. She was crying but quickly stopped when we got to her and into the recovery area.
We didn't stay there long and went back upstairs to her room. Dr. M just about followed us in. She told us how she wanted Katie to have another ultrasound while we were still there and that plans were underway for home health so that we could go home. Shortly after she left our nurse had gotten a call from ultrasound that they wanted us to come down. Molly from ChildLife was our transporter which was nice. Unfortunately the meds Katie had gotten during the the PICC placement started to wear off and her arm started to get sore and she resumed her complaints about her peripheral IV (it was still in place and that hand was pretty swollen and bruised.) It was probably inevitable, it was manipulated quite a bit, and she had lidocaine injections and two stitches. She got mighty cranky and really frustrated. Of course we had to wait and wait and wait down in ultrasound. The actual treatment room down there was cold so she was upset about that, and she was just crying about wanting to go home.
We no sooner arrived back in her room than a resident came in to tell us we weren't going to get to go home until tomorrow (Tuesday afternoon.) It seems (although I came to this realization after much frustration of asking lots of people and getting no answers) that Dr. M decided that since we were scheduled to have the Cytogam infusion tomorrow that it would be just as easy to keep us inpatient overnight and give her the Cytogam as an inpatient and send her home after it. In the middle of me trying to get answers about that, the home health coordinator came by saying that she had things lined up for a visit tomorrow morning, well or course tht wouldn't work but at this time it was 4:40 the place closes at 5 and she wasn't sure she coudl get it changed to tomorrow evening. She she went to make that call and thankfully was able to get everything rescheduled.
I wish I was conveying every frustration or irritation of the day but please know I'm leaving things out because it's just impossible to put it all in.
Katie wasn't happy that I left this evening but Steve was insistent. I wanted to keep James out of school tomorrow and take him to the hospital with me but he has a presentation in one of his classes.
Hopefully I can post tomorrow that we're home.
ChildLife did come by yesterday (Sunday) to talk to Katie about the PICC placement process, and by the time she left we had lots of ways to reach someone to go down with us today. Even so when our daytime nurse stopped by this morning I mentioned it to her and she already knew and it was all lined up. She came by a bit later and said we would be going down at 10:30 and that Marisa from ChildLife had already been told. At 10:30 the sedation nurses from IR came up and put EMLA (numbing cream) on Katie's arm and said she didn't need to come down until 10:45 which worked out well as the team was just about to "round."
The whole team came in with a new peds attending that we hadn't met before. A resident gave report on Katie and when she got to intake and output and the numbers were off so the attending started asking the resident questions. Here's where it got fun for me. The attending asked what Katie's underlying kidney disease had been originally. The resident said "unilateral kidney agenesis" and I must have made a face that reflected my thought which was "that doesn't answer the question." The attending agreed, told the resident that, and then said "even Mom is giggling behind you." I wish I could have laughed out loud the way I wanted to. The resident got drilled a little more and then the attending asked me to answer her questions. A bit further in the conversation they were talking about increasing Katie's fluids and I mentioned that that concerns me because of her bladder being man-made. Later in the afternoon the attending came by again and mentioned how astute I was to bring that up because that was indeed one of Dr. M's concerns about increasing Katie's fluids also.
And thus ended the bright spots of the day.
We went downstairs to IR, Katie's face was full of fear when she had to leave us but we did our best to put on brave faces. We had been told the procedure would take an hour including sedation and prep and dressings and such. She went in at 11 so at 12 I started to panic. Steve made me wait until 12:15 before we said anything. We asked at the desk and the girl dialed the phone asked about Katie and hung up and said "she's still in the procedure." I said "but you didn't ask if there was a problem or complication or another reason they were going long." She spouted possible reasons they could have taken longer than expected. I said "well those are theories and not the actual reason that *my* child's procedure isn't over yet." She tried to direct us down to the IR area (that was a general radiology area I think) but we couldn't follow her directions, luckily someone saw us and asked if we needed help. She knew that they were just finishing up with Katie so we were right there when they wheeled her out of the procedure room. She was crying but quickly stopped when we got to her and into the recovery area.
We didn't stay there long and went back upstairs to her room. Dr. M just about followed us in. She told us how she wanted Katie to have another ultrasound while we were still there and that plans were underway for home health so that we could go home. Shortly after she left our nurse had gotten a call from ultrasound that they wanted us to come down. Molly from ChildLife was our transporter which was nice. Unfortunately the meds Katie had gotten during the the PICC placement started to wear off and her arm started to get sore and she resumed her complaints about her peripheral IV (it was still in place and that hand was pretty swollen and bruised.) It was probably inevitable, it was manipulated quite a bit, and she had lidocaine injections and two stitches. She got mighty cranky and really frustrated. Of course we had to wait and wait and wait down in ultrasound. The actual treatment room down there was cold so she was upset about that, and she was just crying about wanting to go home.
We no sooner arrived back in her room than a resident came in to tell us we weren't going to get to go home until tomorrow (Tuesday afternoon.) It seems (although I came to this realization after much frustration of asking lots of people and getting no answers) that Dr. M decided that since we were scheduled to have the Cytogam infusion tomorrow that it would be just as easy to keep us inpatient overnight and give her the Cytogam as an inpatient and send her home after it. In the middle of me trying to get answers about that, the home health coordinator came by saying that she had things lined up for a visit tomorrow morning, well or course tht wouldn't work but at this time it was 4:40 the place closes at 5 and she wasn't sure she coudl get it changed to tomorrow evening. She she went to make that call and thankfully was able to get everything rescheduled.
I wish I was conveying every frustration or irritation of the day but please know I'm leaving things out because it's just impossible to put it all in.
Katie wasn't happy that I left this evening but Steve was insistent. I wanted to keep James out of school tomorrow and take him to the hospital with me but he has a presentation in one of his classes.
Hopefully I can post tomorrow that we're home.
Update From Sunday 12/21/08
I typed this on Sunday morning 12/21/08 and then couldn't get access to post it...
Last night (Saturday night 12/20), sometime before 3 Katie's IV pump beeped with a message of "infusion complete." This usually means that the nurse didn't keep track of her pumps and how much time they had left so that she could get in and reset it without waking her patient. So when it beeped again around 3 I was annoyed, I didn't even look at what it said I just pushed the nurse call button (which we almost never do.) Well it said "patient side occluded." Sometimes that just means she needs to kind of shake out her hand or straighten it and then the pump needs reset. This time... not so much... the part that goes inside of her vein had backed out and was in the shape of a Z, so it was ruined. So I got up to start negotiating on Katie's behalf to not restick her right then in the middle of the night. I figured since her next abx dose was due at 5am and her Prograf level blood draw was due at 6:45 that we make the abx a little late and just do one stuck and wait until 6:45 to do it, particularly since her fluids were due to be discontinued today anyway. I had to argue a bit ut we got there.
Two residents showed up at 7:15 (grrr) and missed the first stick all together. So I agreed to let them just do a regular blood draw so that her Prograf level wouldn't be any later than it already was and we would regroup. The resident doing the sticking was clearly "done" because after the blood draw stick (which was thisclose to going badly) she said "well I'm off duty now so another resident will be back to try again later." Oh, nice, sorry to have bothered you. One of the nurses on the floor had been following along with us and had help me convince them about delaying the orginal restick, and she asked to try to put another IV in, and I let her... that one "blew." When you place in IV you check it by using a syringe of normal saline to "flush" the line, if it flushes and flushes easily then you have a good IV. If it's hard to flush it's a bad IV, or you see a bump form under the skin as you flush it's "blown" and the fluid is now collecting under the skin instead of going through the vein. At this point we had a freshly lost IV site in the left hand, a failed IV placement attempt in the right arm inside the elbow, a fresh blood draw site in the left arm inside the elbow and a freshly blown IV site in the left hand (yes that's two in the left hand because we're trying to keep her able to do crafts.) So we asked for a PICU nurse as usually they’re more skilled and experienced at placing IVs in kids and babies. Later, at close to 9, a very nice, experienced, skilled PICU nurse came over. Getting another IV placed was really hard on Katie because that left hand is so sore, and she cried and cried, but we got it in and if flushed beautifully. We had a small snafu with it not being tightened together strongly enough but we held it together, cut away some of the tape and retaped it.
And that’s where we are. Her antibiotics schedule is now 9am and 9pm which is actually a good time schedule to go home with and it makes it more likely that we can get sprung tomorrow afternoon since the next dose won’t be due until 9pm.
Childlife is supposed to come by any time now to talk to Katie about the PICC placement process. I hope I won’t have any more updates for you until tomorrow afternoon.
Last night (Saturday night 12/20), sometime before 3 Katie's IV pump beeped with a message of "infusion complete." This usually means that the nurse didn't keep track of her pumps and how much time they had left so that she could get in and reset it without waking her patient. So when it beeped again around 3 I was annoyed, I didn't even look at what it said I just pushed the nurse call button (which we almost never do.) Well it said "patient side occluded." Sometimes that just means she needs to kind of shake out her hand or straighten it and then the pump needs reset. This time... not so much... the part that goes inside of her vein had backed out and was in the shape of a Z, so it was ruined. So I got up to start negotiating on Katie's behalf to not restick her right then in the middle of the night. I figured since her next abx dose was due at 5am and her Prograf level blood draw was due at 6:45 that we make the abx a little late and just do one stuck and wait until 6:45 to do it, particularly since her fluids were due to be discontinued today anyway. I had to argue a bit ut we got there.
Two residents showed up at 7:15 (grrr) and missed the first stick all together. So I agreed to let them just do a regular blood draw so that her Prograf level wouldn't be any later than it already was and we would regroup. The resident doing the sticking was clearly "done" because after the blood draw stick (which was thisclose to going badly) she said "well I'm off duty now so another resident will be back to try again later." Oh, nice, sorry to have bothered you. One of the nurses on the floor had been following along with us and had help me convince them about delaying the orginal restick, and she asked to try to put another IV in, and I let her... that one "blew." When you place in IV you check it by using a syringe of normal saline to "flush" the line, if it flushes and flushes easily then you have a good IV. If it's hard to flush it's a bad IV, or you see a bump form under the skin as you flush it's "blown" and the fluid is now collecting under the skin instead of going through the vein. At this point we had a freshly lost IV site in the left hand, a failed IV placement attempt in the right arm inside the elbow, a fresh blood draw site in the left arm inside the elbow and a freshly blown IV site in the left hand (yes that's two in the left hand because we're trying to keep her able to do crafts.) So we asked for a PICU nurse as usually they’re more skilled and experienced at placing IVs in kids and babies. Later, at close to 9, a very nice, experienced, skilled PICU nurse came over. Getting another IV placed was really hard on Katie because that left hand is so sore, and she cried and cried, but we got it in and if flushed beautifully. We had a small snafu with it not being tightened together strongly enough but we held it together, cut away some of the tape and retaped it.
And that’s where we are. Her antibiotics schedule is now 9am and 9pm which is actually a good time schedule to go home with and it makes it more likely that we can get sprung tomorrow afternoon since the next dose won’t be due until 9pm.
Childlife is supposed to come by any time now to talk to Katie about the PICC placement process. I hope I won’t have any more updates for you until tomorrow afternoon.
Saturday, December 20, 2008
Inpatient saga continued
Thursday evening (12/18) a resident came up from interventional radiology (IR) to have us sign consent forms for the PICC line placement. Which they wanted to do on Friday (12/19.) We told him that one of us parents would need to be in the room and he said "that shouldn't be a problem." Well after I left for the evening a resident came in and said state law prohibitied parents in the treatment room in IR) during the PICC line placement. That was a lie, the state doesn't mandate things like that. Friday morning before I got here (and I got here at 8:20) the peds attending comes in (btw, we don't really like him, we tolerate him as a necessity) and tries to convince Steve that it's unneccessary for us to be in the room. Steve says something to the effect of nice try but we need to be in the room. Then another resident comes in to explain about how there's radiation in the room and it's a sterile field etc. Steve says, nice try but there's radiation when she has the other procedures too and we can be away from the sterile field and still be in the room. So I get here and they round (in case you don't know or recall rounding is where the whole team comes around and discusses your case, it's really just a teaching tool) and they say they're going to discuss our PICC issues with the PICU and see if one of their nurses will do it. (Previously it was always the PICU nurses who did PICC placements at the bedside.) They come back around like 10 or so and say that there's only one over there who does it and she's too busy, and they start talking alternatives which frankly suck because it means being here for the full course of abx and at that point we didn't know how long that would be. So I try to have a converstion (mind you I'm speaking to a person who has lied to us) she keeps using the phrase "peds anesthesia" as the folks who would administer the sedation (it's conscious sedation they don't put you to sleep which is part of the reason we're so adament about being in the room, that and the fact that Katie is TOTALLY FREAKED OUT about the whole process, like starts crying as soon as it gets mentioned.) so I decide that maybe I can talk to someone in peds anesthesia and get comfortable since I know most of them. So I tell the resident that and she agrees to have them come up (which they should have anyway imo and we were told by the first IR residnet that they would come up but they never did until we asked.) Then another idea dawns on me that maybe someone from child life could come in the room with her so I ask one of them as they're walking by and they say "sure we do it all the time." So we talk to Katie about that and this seems like a possibility for her. Then peds sedation comes NOT peds anesthesia, and they were very nice but they tell us things that we didn't know that are frightenting or bring back bad memories, that her arm will be extended onto a little table (she remembers this from the transplant surgery and it was scary), and that the line gets secured with a stitch (her central line after the transplant was secured with a stitch and removing it was a very scary procedure.) So then she's CRYING HYSTERICALLY by the time they leave. But I get her calmed and convinced that we can go forward and the resident comes back (its now 1:30pm btw) and says too late they can't do us now we missed the window because we didn't make a decision early enough. Mind you we were never told there was a window, in fact we had asked for any kind of a time frame and they couldnt' give us one. Basically it was Friday and everybody wanted to go home early (and I'm not kidding!!! we were told "well you know it is Friday afternoon") We PLEADED with them to ask IR to make an exception and we got now where. We got social work involved and nursing called a patient advocate.. nothing. I lost it, I started crying and could not stop. I kept trying to come back into Katie's room but I could not stop crying. Meaghan the social worker saw me and took me to another hallway to talk but I still couldn't stop crying.
Eventually I did and I left the hospital for several hours last night to go get Katie some craft stuff. It's really hard for her not to be able to go to the teen room (as you can tell by the number of times I mention it) so I brought the craft portion of the teen room to her. Luckily for our budget they have all the stocking stuffer stuff out so I was able to get a ton of really cool kits for $1 each. It really helped me to get out of here and get some fresh air and some perspective and distance.
The thing is that we would have been stuck here all weekend anyway even if we would have gotten the PICC because by the time they confirmed what the meds would be (she's on stuff but they were awaiting culture and sensitivity just to be sure that the bacteria hadn't changed from the last culture) it was too late on Friday to set up home health. See you might think that hospitals are 24/7 facilities but in reality unless it's a trauma situation they only handle basic care outside of banking hours. It sucks!
I had hoped today (Saturday 12/20) would be drama free but we did have a smidge of drama this morning, that we were able to fairly easily resolve. They came in and drew her blood, and then at like 9 phlebotomy stuck their head in and said they were here to draw her blood. I said.. umm she was just stuck 2 hours ago. so I go out in the hall and her nurse says it was a bad stick this morning and they had to discard it but she thought the residents were going to restick her so she called them. I got on the phone with Steve (he's at home because of another saga about catheter size and how they can't get the right supplies here so he's waiting until our amazing little neighborhood pharmacy opens to see if they've gotten them in yet) and told him what Carol said and that she said her glucose from that bad sample was 900... LOL she'd likely not be conscious with a blood glucose of 900. So we were prepared to argue that by history that's clearly a bad result and could the y just redraw tomorrow since she's been stable. But the attending basically said the same thing as I did. They may still have to restick her this afternoon after the prograf level comes back and they call that into Dr. M because we dont know if the prograf level would be affected by the glucose or not.. but come to think of it she won't want her restuck because they only run prograf twice a day at 7:30 and 10:30 so might as well wait until tomorrow... cool.
The resident in rounds this morning said that Katie has pylonephritis in the allograft (in english that's enflammation of the kidney in the transplanted kidney) which is different that the diagnosis we had been talking about which is uti of the lower urinary system (aka the bladder.) So I let them finish and then asked if there was something that had changed to change that diagnosis or was that just wording and the resident said not changes she had pulled that diagnosis off of something else (little ugh! because it was just wording but still these guys have got to be more careful and thorough.)
So... the PICC line placement is scheduled for Monday (12/22) and IF it gets done early AND we can get home health scheduled for that evening we could go home then but a.) it's not likely that those two things will happen and b.) even if they did we'd have to come right back here at 8:15am Tuesday morning for the next cytogam infusion. So... we're likely here until late Tuesday afternoon.
And that brings you up to date. If you read the whole saga you deserve an award but it would be dwarfed next to the one that the three of us deserve :o)
Eventually I did and I left the hospital for several hours last night to go get Katie some craft stuff. It's really hard for her not to be able to go to the teen room (as you can tell by the number of times I mention it) so I brought the craft portion of the teen room to her. Luckily for our budget they have all the stocking stuffer stuff out so I was able to get a ton of really cool kits for $1 each. It really helped me to get out of here and get some fresh air and some perspective and distance.
The thing is that we would have been stuck here all weekend anyway even if we would have gotten the PICC because by the time they confirmed what the meds would be (she's on stuff but they were awaiting culture and sensitivity just to be sure that the bacteria hadn't changed from the last culture) it was too late on Friday to set up home health. See you might think that hospitals are 24/7 facilities but in reality unless it's a trauma situation they only handle basic care outside of banking hours. It sucks!
I had hoped today (Saturday 12/20) would be drama free but we did have a smidge of drama this morning, that we were able to fairly easily resolve. They came in and drew her blood, and then at like 9 phlebotomy stuck their head in and said they were here to draw her blood. I said.. umm she was just stuck 2 hours ago. so I go out in the hall and her nurse says it was a bad stick this morning and they had to discard it but she thought the residents were going to restick her so she called them. I got on the phone with Steve (he's at home because of another saga about catheter size and how they can't get the right supplies here so he's waiting until our amazing little neighborhood pharmacy opens to see if they've gotten them in yet) and told him what Carol said and that she said her glucose from that bad sample was 900... LOL she'd likely not be conscious with a blood glucose of 900. So we were prepared to argue that by history that's clearly a bad result and could the y just redraw tomorrow since she's been stable. But the attending basically said the same thing as I did. They may still have to restick her this afternoon after the prograf level comes back and they call that into Dr. M because we dont know if the prograf level would be affected by the glucose or not.. but come to think of it she won't want her restuck because they only run prograf twice a day at 7:30 and 10:30 so might as well wait until tomorrow... cool.
The resident in rounds this morning said that Katie has pylonephritis in the allograft (in english that's enflammation of the kidney in the transplanted kidney) which is different that the diagnosis we had been talking about which is uti of the lower urinary system (aka the bladder.) So I let them finish and then asked if there was something that had changed to change that diagnosis or was that just wording and the resident said not changes she had pulled that diagnosis off of something else (little ugh! because it was just wording but still these guys have got to be more careful and thorough.)
So... the PICC line placement is scheduled for Monday (12/22) and IF it gets done early AND we can get home health scheduled for that evening we could go home then but a.) it's not likely that those two things will happen and b.) even if they did we'd have to come right back here at 8:15am Tuesday morning for the next cytogam infusion. So... we're likely here until late Tuesday afternoon.
And that brings you up to date. If you read the whole saga you deserve an award but it would be dwarfed next to the one that the three of us deserve :o)
We're Still Inpatient
This has been our second to worst hospitalization ever in the history of the over 30 hospitalizations.
I'm going to try to cut and paste some of the details from some emails I've been able to get out here and there. Please forgive the typos, and please feel free to leave knowing the following:
-this place stinks (and it smells bad too)
-residents are a pain in the ... neck
-I fear for the future of medicine
-we have NO CHANCE of going home before Monday afternoon and more likley Tuesday afternoon
-if we do get out of here Monday we have to come right back on Tuesday anyway
If you want details, read on...
Thursday 12/18:
First they wanted to draw her blood at 7am and she had taken her prograf at 8pm the night before so it was going to be a bad result so I refused it. Later I got the real explanation on why they wanted to draw her blood early, it was a perfectly good explanation but they didn't know why they were just doing what they were told and when they were questioned instead of saying they were acting on an order from Dr. M they just said "this is what we usually do".. that may be fine for other parents but I know that this is a new batch of residents who just got onto peds a week ago so don't tell me about your "usually" you just got here...ugh. I told Dr. M had they given me the reasonable explanation I would have gladly let them draw her blood earlier and she agreed that I was right to delay them to the time I had previously been told without the explanation.
Getting her meds ordered properly was a two day affair, and people let me tell you, I have a spread sheet of her meds with EVERYTHING on it that I hand to a resident and a nurse, and anyone else who asks about her meds. However even by Thursday morning her Prograf (that HAS to be given ON TIME) wasn't on the floor in time so I had to give it to her out of our meds from home. And her prednisone wasn't ordered (gave that to her from our home stash as well), and they were delayed in getting her Concerta to the floor.
Then there is the ongoing problem of getting her bowel flush solution. I started giving them the list (2 things) of what we needed at 3:30 Wednesday afternoon and by 9pm that night it still wasn't on the floor. Thursday morning the barely english speaking nurse from Wednesday night night said that it did come up but she was confused by the wording so she sent it back. So at that point that wasn't resolved for Thursday evening, but here's the funny part. They told us that the pharmicist would be in to discuss it with us because they're confused. (and please let me tell you what we need... we need one 500ml bag of 3% saline (they mix different concentrations of saline ALL THE TIME), and a bottle of liquid glycerin that they use for medication suspensions (making a pill into a liquid)) I wasn't there when the pharmacist came so Katie handled it LOL. she was right on the money with what she told them. She said she had to repeat herself like 3 times before they got it.
The biggest problem then and now is that Katie is on what they call contact precautions, everyone who comes in to her room has to wear a gown and gloves, and she can't go to the teen room where she LOVES to hang out and do stuff, they have a wii, ps2, xbox, movies, crafts, computers, etc. so that's really upsetting her. They bring stuff to her and we bring stuff from home but it's not the same, she's pretty much confined to her room. We can go for walks if she wears a gown and gloves but that's only so fun.
The best part about Thursday was it was pet therapy day and they brought the dogs to Katie's room since she couldn't go to them.
I'll try to get more details out later but this computer/internet connection is threatening to not save my post and well that would annoy me.
I'm going to try to cut and paste some of the details from some emails I've been able to get out here and there. Please forgive the typos, and please feel free to leave knowing the following:
-this place stinks (and it smells bad too)
-residents are a pain in the ... neck
-I fear for the future of medicine
-we have NO CHANCE of going home before Monday afternoon and more likley Tuesday afternoon
-if we do get out of here Monday we have to come right back on Tuesday anyway
If you want details, read on...
Thursday 12/18:
First they wanted to draw her blood at 7am and she had taken her prograf at 8pm the night before so it was going to be a bad result so I refused it. Later I got the real explanation on why they wanted to draw her blood early, it was a perfectly good explanation but they didn't know why they were just doing what they were told and when they were questioned instead of saying they were acting on an order from Dr. M they just said "this is what we usually do".. that may be fine for other parents but I know that this is a new batch of residents who just got onto peds a week ago so don't tell me about your "usually" you just got here...ugh. I told Dr. M had they given me the reasonable explanation I would have gladly let them draw her blood earlier and she agreed that I was right to delay them to the time I had previously been told without the explanation.
Getting her meds ordered properly was a two day affair, and people let me tell you, I have a spread sheet of her meds with EVERYTHING on it that I hand to a resident and a nurse, and anyone else who asks about her meds. However even by Thursday morning her Prograf (that HAS to be given ON TIME) wasn't on the floor in time so I had to give it to her out of our meds from home. And her prednisone wasn't ordered (gave that to her from our home stash as well), and they were delayed in getting her Concerta to the floor.
Then there is the ongoing problem of getting her bowel flush solution. I started giving them the list (2 things) of what we needed at 3:30 Wednesday afternoon and by 9pm that night it still wasn't on the floor. Thursday morning the barely english speaking nurse from Wednesday night night said that it did come up but she was confused by the wording so she sent it back. So at that point that wasn't resolved for Thursday evening, but here's the funny part. They told us that the pharmicist would be in to discuss it with us because they're confused. (and please let me tell you what we need... we need one 500ml bag of 3% saline (they mix different concentrations of saline ALL THE TIME), and a bottle of liquid glycerin that they use for medication suspensions (making a pill into a liquid)) I wasn't there when the pharmacist came so Katie handled it LOL. she was right on the money with what she told them. She said she had to repeat herself like 3 times before they got it.
The biggest problem then and now is that Katie is on what they call contact precautions, everyone who comes in to her room has to wear a gown and gloves, and she can't go to the teen room where she LOVES to hang out and do stuff, they have a wii, ps2, xbox, movies, crafts, computers, etc. so that's really upsetting her. They bring stuff to her and we bring stuff from home but it's not the same, she's pretty much confined to her room. We can go for walks if she wears a gown and gloves but that's only so fun.
The best part about Thursday was it was pet therapy day and they brought the dogs to Katie's room since she couldn't go to them.
I'll try to get more details out later but this computer/internet connection is threatening to not save my post and well that would annoy me.
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