Kaitlyn has gotten up at 8:00am the last two mornings. She is back to her home routine. We didn't feel Physio every four hours was necessary anymore, as we aren't getting anything up and Kaitlyn sounds clear. Her secretions are slightly thicker than normal and we are having to suction her more frequently, but this is probably due to surgery, intubation and some pretty hefty antibiotics.
We have been on the floor since yesterday. We will be able to go home as soon as we are up to full feeds and off TPN. So far we haven't even started feeds. Yesterday surgery wanted us to slightly raise Kaitlyn's tube to allow some fluids to remain in the stomach, but still allow some drainage. Today Kaitlyn's tube has been vented to a sixty cc syringe allowing only air to escape. If she tolerates this fine we will start dribbling in some pedialyte tomorrow and see how she does.
Kaitlyn's central line is acting funny today. The nurse tried to get Kaitlyn's bloodwork this morning fom the proximal lumin of her central line and was unsuccessful! She was using a ten cc syringe and pulled back really hard, and I mean really hard! I told her before she started that she may have more success using a three cc syringe and she said but this is a central line. I told her that we have had trouble in the past getting blood from Kaitlyn's central line, but I don't think that she believed me. Kaitlyn will now have to endure finger pokes the rest of her stay for the TPN and meds.
A short time after the nurse failed to get blood Kaitlyn's proximal lumin in her central line started leaking. Surgery wanted the proximal lumin hep. blocked and we are to use the distal lumin for TPN, lipids, maintenance, and meds. Since we cannot run TPN and meds at the same time, and some of her meds can only be run so fast, her TPN will have to be concentrated tomorrow just to get into her what she needs for proper nutrition. This stay just keeps getting more and more frustrating!
Tuesday, July 29, 2008
Sunday, July 27, 2008
Still in PICU
Kaitlyn was awake this morning at six due to radiographs. We did physio coughs and then she stayed off of bi-pap without any issues. She is maintaining sats of 95-97% off of bi-pap. She is about a percent higher on bi-pap. She seems uncomfortable, she is a little quick to fuss and sometimes whimpers in her sleep. She is already getting tylenol around the clock, as per Dr. Brisseau, her General Surgeon. Dr. Brisseau was in and is happy with how she is doing. He wants to leave the Jackson-Pratt drain until after feeds are established to make sure that no feeds leak out through the drain. She can lose the arterial line today, and the urine catheter. Tomorrow we will elevate Kaitlyn's G-tube extension to see if she can tolerate the liquid in her stomach(normal stomach fluids) with just the air venting. She may have to have some dye injected into her bowel to check for leaks.
We will continue to give Kaitlyn all her meds by IV and PR until she is tolerating some stomach feeds. I asked if Kaitlyn could receive her full strength TPN and he said that there is no reason why she couldn't have had it all along. This makes me so mad because the poor little thing doesn't need any further starving. Yet another thing to be monitored the next time she needs TPN. I think that we always sort of feel like the doctors know what they are doing!
Dr. Soder(PICU Intensivist) was in at 2:00pm and said that Kaitlyn's dips in heart rate are a sinus vagal response, completely OK and wouldn't cause her any problems down the road. Her blood pressure is always stable. Dr. Soder says that a lot of these diseases of the CNS have some autonomic involvement, but he doesn't know to what level SMA may be affected. Dr. Soder and Dr. Brisseau discussed antibiotics and Dr. Brisseau is interested in stopping the Vancomycin in favor of something a little less harsh but that would still cover the gram positive bacteria and then leave her on the antibiotic trio for a full week. She will be on Ceftazamine, Ampicillian, and Flagicil. She will be going upstairs (on the floor)tomorrow, and Dr. Brisseau wants her to go to 7th floor south or east so that she will be on medical teams because of all of her respiratory and GI problems. So that she will be followed by all the necessary teams. Dr. Brisseau promised that somebody from surgery would be up to check on her every day. I think that he will follow her extra close and treat her extra nice because her stay here is not by choice! So far he seems really concerned that she get the proper care while she is here.
We will continue to give Kaitlyn all her meds by IV and PR until she is tolerating some stomach feeds. I asked if Kaitlyn could receive her full strength TPN and he said that there is no reason why she couldn't have had it all along. This makes me so mad because the poor little thing doesn't need any further starving. Yet another thing to be monitored the next time she needs TPN. I think that we always sort of feel like the doctors know what they are doing!
Dr. Soder(PICU Intensivist) was in at 2:00pm and said that Kaitlyn's dips in heart rate are a sinus vagal response, completely OK and wouldn't cause her any problems down the road. Her blood pressure is always stable. Dr. Soder says that a lot of these diseases of the CNS have some autonomic involvement, but he doesn't know to what level SMA may be affected. Dr. Soder and Dr. Brisseau discussed antibiotics and Dr. Brisseau is interested in stopping the Vancomycin in favor of something a little less harsh but that would still cover the gram positive bacteria and then leave her on the antibiotic trio for a full week. She will be on Ceftazamine, Ampicillian, and Flagicil. She will be going upstairs (on the floor)tomorrow, and Dr. Brisseau wants her to go to 7th floor south or east so that she will be on medical teams because of all of her respiratory and GI problems. So that she will be followed by all the necessary teams. Dr. Brisseau promised that somebody from surgery would be up to check on her every day. I think that he will follow her extra close and treat her extra nice because her stay here is not by choice! So far he seems really concerned that she get the proper care while she is here.
Saturday, July 26, 2008
Still Intubated!
Kaitlyn slept through the night from 11:00pm to 4:00 am when the next physio was done. No coughing this time. After physio she went back to sleep until 6:00am when routine x-rays were done. Fentanyl was stopped at about 5:30 am (started at 2ug/kg/day which was cut to 1ug/kg/day yesterday - seemed to be well tolerated). Since 6:00am she has been awake more than asleep. Only a brief nap around 10:00 am. Now just waiting for Dr. Soder(PICU Intensivist) to come yank the tube out.
Kaitlyn was successfully extubated at 2:00pm. She was given a dose of glycopyrrolate before we got ready to extubate her. We coughed her through the endotracheal tube, three rounds of five breaths, suctioned her tube and mouth and then pulled the tube. We decided to also pull the NG-tube as we didn't feel that it would allow us a good enough seal with the bi-pap mask. Her G-tube is still vented to drain. It is working as I could hear lots of air coming out. We changed her bi-pap settings to 20 over 5 from her normal of 17 over 3. She was soooooo happy to have that tube out, she grinned and grinned. She is left with a larger than normal gap in the middle of her front teeth. She was testing out her own voice and seemed pleasantly impressed that it worked again. Her sats are 95-97% and her heart rate is nice and low 90-120bpm. Respiration rate is 30-50 on bi-pap.
Kaitlyn's Lasix and Aminophillan were stopped prior to extubation. Her potassium came back low so she is getting a bolus dose now. Currently she is on her TPN, maintenance, potassium and antibiotics. Her heart rate has been a little erratic, anywhere from 50's to 1 teens. she settles out when she is awake. She is extremely talkative!!! She has the nurses and resident doctor in stitches tonight. She is babbling and calling for a-la-la-la(Alexander), and go-go-go, and go-go car-car. Her temp. is back to normal, mid 36's. She is handling coughs like a pro, no problems at all. She came off of bi-pap for about an hour after evening physio and coughs. She did really well, maintained sats and heart rate stayed low. All in all a successful day!
Kaitlyn was successfully extubated at 2:00pm. She was given a dose of glycopyrrolate before we got ready to extubate her. We coughed her through the endotracheal tube, three rounds of five breaths, suctioned her tube and mouth and then pulled the tube. We decided to also pull the NG-tube as we didn't feel that it would allow us a good enough seal with the bi-pap mask. Her G-tube is still vented to drain. It is working as I could hear lots of air coming out. We changed her bi-pap settings to 20 over 5 from her normal of 17 over 3. She was soooooo happy to have that tube out, she grinned and grinned. She is left with a larger than normal gap in the middle of her front teeth. She was testing out her own voice and seemed pleasantly impressed that it worked again. Her sats are 95-97% and her heart rate is nice and low 90-120bpm. Respiration rate is 30-50 on bi-pap.
Kaitlyn's Lasix and Aminophillan were stopped prior to extubation. Her potassium came back low so she is getting a bolus dose now. Currently she is on her TPN, maintenance, potassium and antibiotics. Her heart rate has been a little erratic, anywhere from 50's to 1 teens. she settles out when she is awake. She is extremely talkative!!! She has the nurses and resident doctor in stitches tonight. She is babbling and calling for a-la-la-la(Alexander), and go-go-go, and go-go car-car. Her temp. is back to normal, mid 36's. She is handling coughs like a pro, no problems at all. She came off of bi-pap for about an hour after evening physio and coughs. She did really well, maintained sats and heart rate stayed low. All in all a successful day!
Friday, July 25, 2008
Post Surgery
Kaitlyn's lungs were still clear this morning. Tim and I had gone home for the night, there was nothing that we could have done. She was sedated with Rocuronium and Fentanyl and any lingering anesthetic. She was getting manual chest physio every four hours followed by suctioning the endotracheal tube. The plan was to have her wake up in the morning and then try some cough-assist through the endotracheal tube, see how she did, and possibly extubate her today or tomorrow morning at the latest. Through the night her nurse tried coughing her through the tube with pressures of +10 ,-10 and she didn't tolerate this very well! I say no wonder she didn't tolerate it! I don't know any details as to how the coughing was done (how many seconds, rounds, breaths and suctioning) but I think that they should have waited until she was a little less sedated and used higher inspiratory/expiratory pressures. I need to find out exactly how the coughing is done through the endotracheal tube. It's one thing to read the peri-operative protocol of Dr. Schroth and another to see it in action!
Kaitlyn received her last dose of Rocuronium at 5:00am and her Fentanyl was cut in half at about 11:00 am. We went for some lunch around noon and we returned at about 1:00pm, Kaitlyn was beginning to open her eyes. She remained pretty groggy for the afternoon, but started taking some breaths above the back-up rate of the vent. Back-up rate of the vent was turned back to 10 from 20 breaths/min, but she kept her rate usually at 15 or above. She had a wake period from 5:30 pm to about 8:00pm and from 10 - 11:00 pm during physio. Cough assist was used after this physio. It went well, but there was nothing to come up. Her lungs are still doing very well.
Kaitlyn received her last dose of Rocuronium at 5:00am and her Fentanyl was cut in half at about 11:00 am. We went for some lunch around noon and we returned at about 1:00pm, Kaitlyn was beginning to open her eyes. She remained pretty groggy for the afternoon, but started taking some breaths above the back-up rate of the vent. Back-up rate of the vent was turned back to 10 from 20 breaths/min, but she kept her rate usually at 15 or above. She had a wake period from 5:30 pm to about 8:00pm and from 10 - 11:00 pm during physio. Cough assist was used after this physio. It went well, but there was nothing to come up. Her lungs are still doing very well.
Thursday, July 24, 2008
Emergency Surgery
Kaitlyn woke up moving her legs this morning and waving her arms! She had an OK night, pretty fussy and awake from 3:30am until 4:30am, and every time the nurse was in, but overall a pretty good night. They kept a close eye on Kaitlyn's leg all night. Her right leg was definitely cooler than the left one, but seemed to warm up a bit towards morning. It still looks slightly blue to me. Surgery was in around 8:30am and said that they were trying to get Kaitlyn down ASAP this morning for her new J-tube; they just had to wait for the radiographer to get in. Hopefully Kaitlyn won't have to wait much longer.
The resident wants to have somebody come in this morning and do an ultrasound on Kaitlyn's leg just to be safe. She has also called our nutritionist in to figure out Kaitlyn's TPN as it will be ordered just in case there are any complications with her J-tube reinsertion. It's probably more likely that we would have more trouble restarting her feeds. We had to fight hard to get the TPN ordered, they said that she would be getting her J-tube anyway. My husband and I said that we wanted to cover all our bases and she was not to be starved because we didn't request the TPN soon enough!
Kaitlyn went down to ultrasound at 9:00am to look at her leg. She does have some clotting but it looks chronic not something that was done yesterday(trying to place the central line) by our General Surgeon, but perhaps exacerbated by it. I don't think that they will be doing anything proactive about the clot, it seems like other pathways have already been formed for the blood to get through.
Then Kaitlyn went to radiography for her J-tube reinsertion. There were two radiographers present in the room. One was a Dr. we have had in the past, the other a woman who didn't seem that confidant about placing the new tube!! She advanced the new tube really fast, the tube took a funny turn and the primary radiographer said "whoa... it shouldn't look like that" and decided to inject some contrast fluid to see were the bowel was going with regards to the end of the J-tube. When the contrast reached the end of the J-tube it didn't continue on down the bowel it dispersed and flowed out into the stomach cavity.
The primary radiographer said that he felt that the old J-tube had erroded the wall of the bowel causing a perferation in the bowel. The new tube was a GOOD six inches away from the last J-tube end point so I believe that they perferated the bowel when they inserted the new J-tube!
Kaitlyn had to go for immediate surgery to fix the hole in her bowel. Her platelets and haemoglobin were both low so they may have to do infusions during surgery. She is currently on TPN as of 2:15pm so she was 27+ hours without proper nutrition. Our General Surgeon is performing her surgery and is going to try to do so laporascopically. He also suggested that we think about another way in which to feed our daughter from now on. He will try to do a laporascopic fundiplocation, but if he has to open her up for the bowel surgery he may end up doing her fundo open chest as well. Her perferation is at the back of the stomach wall and appears fixed. Kaitlyn will go to PICU after surgery and is not likely to be extubated tonight. Dr. Macmanus (PICU Intensivist) will be in charge of Kaitlyn's care when in PICU.
Kaitlyn was in surgery until 9:30pm. Dr. Brisseau fixed a tear in Kaitlyn's bowel (he thinks from the guide wire) and a small puncture from the J-tube. He said that the wound looked fresh that there was no indication that her bowel had been open for very long at all. He suspects that the bowel was perferated in flouroscopy when she was having her new J-tube placed. He was able to do the bowel repair laporascopically and took more time doing it because he was trying to be thorough in checking for any more leaks using a flourescent dye. When Dr.Brisseau was done with the bowel surgery Kaitlyn was stable and he knew that she would not come off of the ventilator until the next day, at least, so he decided to go ahead with the laporascopic fundiplication. The Fundo went well but took forever as her stomach is very small having had no feeds since last October. He had a difficult time getting a proper 360 degree wrap and making sure that it wasn't too tight! He placed an NG-tube attached to suction to better vent and drain her stomach. He placed a drain at the bowel site.
We got to see Kaitlyn at 10:20pm. She looked very swollen but otherwise very good. Her sats were 100%, her lungs were sounding clear, and she was at 30% O2. Thank goodness My husband and I pushed hard for the TPN otherwise she would have been without food for an incredibly long time.
The resident wants to have somebody come in this morning and do an ultrasound on Kaitlyn's leg just to be safe. She has also called our nutritionist in to figure out Kaitlyn's TPN as it will be ordered just in case there are any complications with her J-tube reinsertion. It's probably more likely that we would have more trouble restarting her feeds. We had to fight hard to get the TPN ordered, they said that she would be getting her J-tube anyway. My husband and I said that we wanted to cover all our bases and she was not to be starved because we didn't request the TPN soon enough!
Kaitlyn went down to ultrasound at 9:00am to look at her leg. She does have some clotting but it looks chronic not something that was done yesterday(trying to place the central line) by our General Surgeon, but perhaps exacerbated by it. I don't think that they will be doing anything proactive about the clot, it seems like other pathways have already been formed for the blood to get through.
Then Kaitlyn went to radiography for her J-tube reinsertion. There were two radiographers present in the room. One was a Dr. we have had in the past, the other a woman who didn't seem that confidant about placing the new tube!! She advanced the new tube really fast, the tube took a funny turn and the primary radiographer said "whoa... it shouldn't look like that" and decided to inject some contrast fluid to see were the bowel was going with regards to the end of the J-tube. When the contrast reached the end of the J-tube it didn't continue on down the bowel it dispersed and flowed out into the stomach cavity.
The primary radiographer said that he felt that the old J-tube had erroded the wall of the bowel causing a perferation in the bowel. The new tube was a GOOD six inches away from the last J-tube end point so I believe that they perferated the bowel when they inserted the new J-tube!
Kaitlyn had to go for immediate surgery to fix the hole in her bowel. Her platelets and haemoglobin were both low so they may have to do infusions during surgery. She is currently on TPN as of 2:15pm so she was 27+ hours without proper nutrition. Our General Surgeon is performing her surgery and is going to try to do so laporascopically. He also suggested that we think about another way in which to feed our daughter from now on. He will try to do a laporascopic fundiplocation, but if he has to open her up for the bowel surgery he may end up doing her fundo open chest as well. Her perferation is at the back of the stomach wall and appears fixed. Kaitlyn will go to PICU after surgery and is not likely to be extubated tonight. Dr. Macmanus (PICU Intensivist) will be in charge of Kaitlyn's care when in PICU.
Kaitlyn was in surgery until 9:30pm. Dr. Brisseau fixed a tear in Kaitlyn's bowel (he thinks from the guide wire) and a small puncture from the J-tube. He said that the wound looked fresh that there was no indication that her bowel had been open for very long at all. He suspects that the bowel was perferated in flouroscopy when she was having her new J-tube placed. He was able to do the bowel repair laporascopically and took more time doing it because he was trying to be thorough in checking for any more leaks using a flourescent dye. When Dr.Brisseau was done with the bowel surgery Kaitlyn was stable and he knew that she would not come off of the ventilator until the next day, at least, so he decided to go ahead with the laporascopic fundiplication. The Fundo went well but took forever as her stomach is very small having had no feeds since last October. He had a difficult time getting a proper 360 degree wrap and making sure that it wasn't too tight! He placed an NG-tube attached to suction to better vent and drain her stomach. He placed a drain at the bowel site.
We got to see Kaitlyn at 10:20pm. She looked very swollen but otherwise very good. Her sats were 100%, her lungs were sounding clear, and she was at 30% O2. Thank goodness My husband and I pushed hard for the TPN otherwise she would have been without food for an incredibly long time.
Wednesday, July 23, 2008
J-Tube Blocked
Kaitlyn was admitted to Hospital again today as her J-tube blocked again! We were giving her 1:00pm meds along with some tylenol for a fever and the tylenol blocked her tube. She woke up this morning with a fever of 38.9 and has had a low-grade fever of 37.5 off and on for the last couple of days. She had a slight increase in secretions today, as she was drooling all morning and never drools under normal circumstances. Kaitlyn hasn't had a good BM the last two days, and had two diapers with very little poop today. She is due for a really good BM sometime soon.
They weren't able to get TPN for Kaitlyn today as they left the order for too late in the day!!!! My husband and I had asked for it upon arrival to the hospital as we knew that they probably would not replace her tube today. She will have to go without any food until tomorrow late morning. She had a central line placed in her left femoral by Dr. Macmanus our PICU Intensivist. Our General Surgeon, Dr. Brisseau, tried her right leg, and hit the artery and drew arterial blood for a blood gas, but the wire kinked when he went to thread the veinous poke, and then he couldn't find the vein again. Kaitlyn was started on D5W and NaCl with potassium 40 mmol. She had to be catheterized for a urine sample, which was incredibly smooth. Then she was started on the IV antibiotic ceftazamine in case her fever is due to her pseudomonas colony. I think that she is having some sort of GI issues as her respiratory is perfect so far!!! There is a slight increase in output from her G-tube, and the color is definitly green with some sludgy brown making it's way through in the AM.
Our pediatrician was in tonight around 8:00pm until 9:00pm, and she wants to start Kaitlyn on Vancomycin as well as the Ceftazamine hopefully Kaitlyn will not spike a big fever this time like she did last (drug fever). I also noted that Kaitlyn's leg that Dr. Brisseau worked on seemed cooler than her other leg. The pulses are much weaker in the right leg also. They used a dopler on her leg but were unable to find any pulses. Our pediatrician said that she could feel the femoral pulse so we are just going to keep a close eye on her leg as the night continues and hope that it is nothing.
She had blood drawn at 11:00pm to check electrolytes and Co2. They sent the lab up, but I sent them back and said that she has a central line and the nurse could draw the blood through that. They were actually going to poke her again after all she's been through today. Now we are just praying for an easy night and no further weakness come morning without any food all night!!
They weren't able to get TPN for Kaitlyn today as they left the order for too late in the day!!!! My husband and I had asked for it upon arrival to the hospital as we knew that they probably would not replace her tube today. She will have to go without any food until tomorrow late morning. She had a central line placed in her left femoral by Dr. Macmanus our PICU Intensivist. Our General Surgeon, Dr. Brisseau, tried her right leg, and hit the artery and drew arterial blood for a blood gas, but the wire kinked when he went to thread the veinous poke, and then he couldn't find the vein again. Kaitlyn was started on D5W and NaCl with potassium 40 mmol. She had to be catheterized for a urine sample, which was incredibly smooth. Then she was started on the IV antibiotic ceftazamine in case her fever is due to her pseudomonas colony. I think that she is having some sort of GI issues as her respiratory is perfect so far!!! There is a slight increase in output from her G-tube, and the color is definitly green with some sludgy brown making it's way through in the AM.
Our pediatrician was in tonight around 8:00pm until 9:00pm, and she wants to start Kaitlyn on Vancomycin as well as the Ceftazamine hopefully Kaitlyn will not spike a big fever this time like she did last (drug fever). I also noted that Kaitlyn's leg that Dr. Brisseau worked on seemed cooler than her other leg. The pulses are much weaker in the right leg also. They used a dopler on her leg but were unable to find any pulses. Our pediatrician said that she could feel the femoral pulse so we are just going to keep a close eye on her leg as the night continues and hope that it is nothing.
She had blood drawn at 11:00pm to check electrolytes and Co2. They sent the lab up, but I sent them back and said that she has a central line and the nurse could draw the blood through that. They were actually going to poke her again after all she's been through today. Now we are just praying for an easy night and no further weakness come morning without any food all night!!
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