OK everyone, this is Kathy because Kevin had to go into work almost all day today. I don't know how Kevin stays with Kinley and writes the blog every day because I had to do it once today and it is not easy. I guess that pretty much explains why the post is so late today.
I got to Kinley's bedside pretty early this morning and Delores, Kinley's neonatal nurse practitioner, was already checking in on Kinley and making some changes. Delores increased Kinley's feedings from 20ml/hr to 24ml/hr. The goal is for Kinley to reach 28ml/hr. After Delores left Katie, Kinley's nurse, told me that Kinley had just spit up some food, but her and Delores were thinking it was because Kinley's bed was flat and the head of the bed had been elevated before. Katie elevated the head of Kinley's bed again to see if that would help any.
Once Kinley was re-situated in bed I began working on her range of motion exercises that the OT (occupational therapist) showed us how to do. While I was working with Kinley, Delores came back by with Dr. P. for rounds.
During rounds it was decided to change Ativan from being given every 6 hours to every 8 hours and to stop Kinley's TPN (IV nutrition). Kinley will just receive some extra fluids through her IV line now and all her nutrition will come from the breast milk that she is getting through her NG tube. This change was made since Kinley is so close to full feedings of breast milk from her NG anyway. In addition to her NG feeds, Kinley can also have three extra oral feedings. Before today, Kinley was only allowed one extra feeding which consisted of 10 ml of milk from a bottle. Now for the big news that came out of rounds today...Kinley and I can try to breast feed! Those three extra oral feedings can be either from a bottle or breastfeeding.
After rounds Kinley decided to have yet another blowout diaper. This one was so messy that she needed new clothes, a bedding change and a sponge bath. I think she got herself pretty worked up about it because right after the blowout she spit up again. Poor Kinley. I let Kinley have some tummy time by being held up against me after she was all clean again.
During the day Kinley and I tried the breastfeeding thing twice and what we decided was that we need more practice. After the second attempt with no luck Kinley received a bottle instead. She took all 10 ml in about 5 minutes and only gaged once. I though she did pretty well. I will keep trying to work with Kinley on breast feeding, but the important thing is that Kinley gets some food orally. I don't really care how she does it. Whatever works best for her is what I want to do.
Just before shift change I started to change Kinley's diaper when she decided to spit up again. This time she spit up a little more than the last time and her NG tube came out as well. Katie called Delores and Delores decided to stop Kinley's Zantac and start Prilosec. Delores thinks that the spitting up is a result of reflux that CDH babies are prone to. Prilosec is a medication that blocks some of the acid production by the stomach and usually works a little better than Zantac. Kinley has not had very high residuals during the day and she was not overly agitated, so Delores does not think it is from the increased tube feedings or withdrawal symptoms. Hopefully with the Prilosec now she will spit up less. We will just have to wait and see.
Overall it was a pretty good day. Kinley was awake for most of the day and was fairly good, but she did have her moments of fussiness. Since Kinley was awake so much today that made the blog writing even harder because I like to spend as much time with Kinley when she is awake as possible, especially since I am back to working full-time.
Saturday, July 19, 2008
Friday, July 18, 2008
Friday, July 18th - No More Oxygen Support
When I arrived Kinley was asleep in her boppy and her nasal cannula was completely off. She looks so much better without that tube going across her face. Now all she has left on her face is her NG tube.
I did not miss rounds, but Diane (Kinley's nurse today and one of her previous ECMO nurses) does gets me caught up on everything else that I missed this morning. Delores, the nurse practitioner, came by early and put in an order to increase Kinley's continual feed from 19 ccs per hour to 20 ccs per hour. Also, Amy from OT (Occupational Therapy) had already been by and fed Kinley her first bottle of the day. That's right, I said "first bottle of the day." Kinley is now scheduled to receive 2 bottles a day, each one with 10 ccs as a goal consumption. Diane said that Kinley took her bottle pretty well, but she did gag a little bit. The funniest part (mainly because I didn't have to clean it up) of Diane's morning update is that Kinley had a major blow out. When Diane went to change Kinley's poopy diaper this morning, Kinley decided to keep going once the diaper was off. Kinley got it all over her bed, her clothes and she even stepped in it. Diane had to get Megan, another one of Kinley's previous ECMO nurses, to hold Kinley while she completely changed her bedding. I am glad that Diane is a good sport because I thought that her story was hilarious. And yes, I know that this will soon be something that happens to Kathy and I once we get Kinley home.
During rounds there were a few changes with Kinley's medications. Her ativan (sedative) and erythromycin (for stomach and intestine motility) will stay the same, but her methadone (pain killer) doses will move from being given every 6 hours to every 8 hours. The methadone dosage will stay the same, only the time between doses is changing. The dosage of Zantac (for acid reflux) that Kinley is receiving will be increased. Not because Kinley is showing any outwardly signs of acid reflux, but because Kinley is a CDH (congenital diaphragmatic hernia) baby and they are basically guaranteed to have acid reflux due to the fact that their intestines had been out of place for so long. To finish up rounds, orders are put in that will allow nurses to bottle feed Kinley. The reason for this order is that OT does not work over the weekends and they do not want Kinley to have to wait until Monday for more bottle feeding.
I try to work with Kinley on rolling over and giving her some tummy time, but it is kind of hard with all of her "attachments." It will be nice when she does not have as many wires, cords and IVs attached to her.
Right before shift change Delores (nurse practitioner) stops by to talk with Kathy and I about some future changes to Kinley's care. Delores is very confident that Kinley will only be receiving TPN (IV nutrition) for 2 more days because by then Kinley will be receiving all of her needed calories through her feedings. Once the TPN is stopped they will begin to give Kinley vitamin D and iron supplements since neither are in breast milk. Along with the supplements, they will begin to fortify Kathy's breast milk. This will give it a little extra "punch" of nutrition that will help Kinley heal faster. They are also planning on changing Kinley's feeding schedule. She is currently on continual feeds. This means that Kinley's stomach always has food in it and she does not ever feel hunger throughout the day. They will begin to compress the amount of time that Kinley receives food so it will be more like a real feeding. So her belly will be more full during feedings and then she will go through periods of time where she does not receive any food. And lastly, Kinley will be 2 months old next week so they will need to give her her 2 month immunizations. That should be a fun filled day of screaming and crying (sarcasm again)!
I did not miss rounds, but Diane (Kinley's nurse today and one of her previous ECMO nurses) does gets me caught up on everything else that I missed this morning. Delores, the nurse practitioner, came by early and put in an order to increase Kinley's continual feed from 19 ccs per hour to 20 ccs per hour. Also, Amy from OT (Occupational Therapy) had already been by and fed Kinley her first bottle of the day. That's right, I said "first bottle of the day." Kinley is now scheduled to receive 2 bottles a day, each one with 10 ccs as a goal consumption. Diane said that Kinley took her bottle pretty well, but she did gag a little bit. The funniest part (mainly because I didn't have to clean it up) of Diane's morning update is that Kinley had a major blow out. When Diane went to change Kinley's poopy diaper this morning, Kinley decided to keep going once the diaper was off. Kinley got it all over her bed, her clothes and she even stepped in it. Diane had to get Megan, another one of Kinley's previous ECMO nurses, to hold Kinley while she completely changed her bedding. I am glad that Diane is a good sport because I thought that her story was hilarious. And yes, I know that this will soon be something that happens to Kathy and I once we get Kinley home.
During rounds there were a few changes with Kinley's medications. Her ativan (sedative) and erythromycin (for stomach and intestine motility) will stay the same, but her methadone (pain killer) doses will move from being given every 6 hours to every 8 hours. The methadone dosage will stay the same, only the time between doses is changing. The dosage of Zantac (for acid reflux) that Kinley is receiving will be increased. Not because Kinley is showing any outwardly signs of acid reflux, but because Kinley is a CDH (congenital diaphragmatic hernia) baby and they are basically guaranteed to have acid reflux due to the fact that their intestines had been out of place for so long. To finish up rounds, orders are put in that will allow nurses to bottle feed Kinley. The reason for this order is that OT does not work over the weekends and they do not want Kinley to have to wait until Monday for more bottle feeding.
I try to work with Kinley on rolling over and giving her some tummy time, but it is kind of hard with all of her "attachments." It will be nice when she does not have as many wires, cords and IVs attached to her.
Right before shift change Delores (nurse practitioner) stops by to talk with Kathy and I about some future changes to Kinley's care. Delores is very confident that Kinley will only be receiving TPN (IV nutrition) for 2 more days because by then Kinley will be receiving all of her needed calories through her feedings. Once the TPN is stopped they will begin to give Kinley vitamin D and iron supplements since neither are in breast milk. Along with the supplements, they will begin to fortify Kathy's breast milk. This will give it a little extra "punch" of nutrition that will help Kinley heal faster. They are also planning on changing Kinley's feeding schedule. She is currently on continual feeds. This means that Kinley's stomach always has food in it and she does not ever feel hunger throughout the day. They will begin to compress the amount of time that Kinley receives food so it will be more like a real feeding. So her belly will be more full during feedings and then she will go through periods of time where she does not receive any food. And lastly, Kinley will be 2 months old next week so they will need to give her her 2 month immunizations. That should be a fun filled day of screaming and crying (sarcasm again)!
Friday, July 18th - Goodbye Nasal Cannula
Before I left last night, a little after midnight, Barkley (Kinley's night nurse) had pulled the nasal cannula out of Kinley's nose, but had not officially removed it from her head in case she needed the oxygen support back. Today, the nasal cannula is officially off of Kinley and she is breathing room air like the rest of us. Here are a few of the many pictures we have already taken today.
Kinley when I arrived this morning. She is asleep in her boppy.
Look who has daddy's double chin!
I love my boppy.
Whoa, who is this guy with the camera right in my face?
Oh, it just dad.
Alright dad, enough with the pictures already.
Man, this is comfortable without my nasal cannula!
Just chillin' with one of my bears.
Don't we make a cute couple?
Kinley when I arrived this morning. She is asleep in her boppy.
Look who has daddy's double chin!
I love my boppy.
Whoa, who is this guy with the camera right in my face?
Oh, it just dad.
Alright dad, enough with the pictures already.
Man, this is comfortable without my nasal cannula!
Just chillin' with one of my bears.
Don't we make a cute couple?
A New Picture Montage by Aunt Mary
Aunt Mary (Kathy's sister) has created another great picture montage of Kinley. This one goes along with Wednesday's post of "A Day of 1sts." The link below should take you directly Kinley's newest picture montage.
http://www.onetruemedia.com/shared?p=66ccd9da0266b5443f2a02&skin_id=601&utm_source=otm&utm_medium=text_url
http://www.onetruemedia.com/shared?p=66ccd9da0266b5443f2a02&skin_id=601&utm_source=otm&utm_medium=text_url
Thursday, July 17, 2008
Thursday, July 17th - Weaning Oxygen Support
Warning to readers: I do not know why, but for some reason this post did not go onto the blog correctly. It is missing many line spaces between paragraphs.
When we arrived at Kinley's bed station today we noticed that something was different. Apparently Kinley felt like her crib needed something more, so she asked Holly (one of Kinley's previous nurses) to get her a mobile. (No, not a mobile phone. We are not ready for those bills yet.) Holly made a very good choice because Kinley loves listening to her new music and watching her buddies fly around above her. I feel pretty confident in saying that Kinley will not miss staring at the ceiling tiles.
When we arrived at Kinley's bed station today we noticed that something was different. Apparently Kinley felt like her crib needed something more, so she asked Holly (one of Kinley's previous nurses) to get her a mobile. (No, not a mobile phone. We are not ready for those bills yet.) Holly made a very good choice because Kinley loves listening to her new music and watching her buddies fly around above her. I feel pretty confident in saying that Kinley will not miss staring at the ceiling tiles.
During rounds today Dr. C decided to keep Kinley's methadone, ativan and erythromycin doses exactly the same as yesterday, but she will increase her continual feedings from 15 ccs per hour to 19 ccs per hour. Now that all of Kinley's medications go through her NG tube and into her stomach there is not a need for her to keep her mid line IV, so Dr. C places an order to have it removed today. That will leave Kinley with only on IV, her PICC line. Currently going through her PICC line are lipids (fats) and TPN (nutrition). Kinley has been receiving lipids and TPN for the vast majority of her stay here at Children's Mercy, but since Kinley is eating more on her own there will need to be a few changes made. She is getting plenty of lipids through her feedings so they are going to stop her IV lipids completely. Kinley's TPN currently has Zantac in it to help with acid reflux and/or stomach irritation. Kinley has not shown any signs of acid reflux, but CDH (congenital diaphragmatic hernia) babies are known for having reflux due to the fact that their intestines had been out of place for so long. Today they will stop giving her Zantac through her TPN and start giving directly through her NG tube. But the biggest news in rounds today is that they will begin the final phase of weaning Kinley off of her nasal cannula.
The final phase of oxygen support weaning is much more involved and lengthy than I would have thought. Kinley is currently receiving 21% oxygen (room air) at a flow rate of 0.5 liters per minute through her nasal cannula. They will increase her oxygen support to 100% oxygen and then begin weaning her flow down 0.1 liters at a time. As long as Kinley keeps her blood oxygen saturation in the mid to high 90s they will continue to wean. The lowest they can wean her flow to is 0.1 liters per minute. Once she is down to 0.1 liters per minute of flow they will begin to wean the oxygen support down from 100%, until she is at 21%. Whenever Kinley is able to reach 0.1 liters per minute of flow at 21% oxygen they will be able to remove her nasal cannula.
Nancy, the OT (occupational therapist), stops by Kinley's bedside around 1:45 pm to give Kinley her second bottle feeding every. Kinley had her first bottle feeding yesterday and she ate 8 ccs without having any issues. Today the goal for Kinley is to take 10 ccs without coughing, gagging or choking. This time Nancy feeds Kinley while she is sitting straight up instead of on her side like yesterday. This will give us a better idea on how well Kinley can take to bottle feeding. Kinley give Nancy another surprise today and finishes her 10 ccs, without any problems, in about 3 - 4 minutes.
Ashley, Kinley's nurse, has been lowering her oxygen flow all day and around 4:00 pm Kinley is turned down to a flow of 0.1 liters per minute. Now the only thing left to wean on her nasal cannula will be the percentage of oxygen being provided. If Kinley can get her oxygen support down to 21% without dropping her blood oxygen saturation below the mid 90s she will be ready to try life with any type of oxygen support.
Around 5:00 pm Kinley's streak of poopy diapers continues. And yes, they are still very runny. Yea for diaper changing! This time I didn't get any extra diapers dirty, but we did have to put one of her blankets in the wash. Probably around the time I finished fumbling around getting Kinley's diaper changed Ashley came to check Kinley's residual. It was a tiny 5.5 ccs and that was with Kinley new continual feed of 19 ccs per hour.
At 6:00 pm Ashley makes the first adjustment to Kinley's oxygen support by turning it down from 100% oxygen through her nasal cannula to 90%.
After shift change I return to find that Barkley (Kinley's night nurse) is back again tonight. Last night, Barkley gave Kinley her first official bath. Kinley was actually sitting in a tub of water.
Around 9:00 pm I find that Kinley has yet another poopy diaper. The streak is still alive! Yes, this diaper is just as runny as the last, but this time I don't get anything extra dirty. As soon as I am out of the way Barkley gets in with Kinley to check her residual. This time it was a minuscule 3.8 ccs. Way to go baby blue eyes!
At 9:30 pm Barkley turns Kinley's oxygen down to 80%. At 10:30 pm she turns it down again to 70% and at 11:00 pm it is moved down to 60%. Kinley has continued to keep her blood oxygen saturation in the high 90s and has hit 100% quite often through this entire weaning process.
Night rounds stop by Kinley's bedside at 11:10 pm and they give Barkley the green light to turn Kinley's oxygen support all the way down to 21%. Kinley is now at the least amount possible for oxygen support and she is still keeping her blood oxygen saturation in the mid 90s. The only then left to do now is remove the nasal cannula and see how she does on her own. But for me, I need to go home and get some sleep. Kathy and I are hoping that tomorrow will be a nasal cannula free day.
Wednesday, July 16, 2008
Wednesday, July 16th - A Day of Many 1sts!
When we arrived this morning around 11:00 am we went straight to Kinley's c
rib to say hi, but she was not there. It took us a second to realize that she was in a bouncer seat! This is the first time Kinley has ever been out of her crib without being held by someone. Ashley, Kinly's nurse today, told us that the OT (occupational therapist) stopped by to see Kinley this morning and said it would be good to get Kinley out of bed and into a chair so that she could work on head control. Ashley also told us that the OT planned to come back a little later to work with Kinley while we were here so we can learn some exercises to do with Kinley on our own.
Ashley also got us caught up on the events we missed from last night and earlier this morning. She told us that Kinley had not pooped or thrown up since yesterday and that we haven't missed rounds yet. Delores, Kinley's neonatal nurse practitioner, did stop by to briefly see Kinley and she wrote a few orders while she was there. Delores increased Kinley's feedings to 15 cc/hr and decreased the amount of nutrition that Kinley is getting through her IVs. Now Kinley is getting more nutrition from her feedings than through her IV, so that is pretty good.
With Kinley's methadone and ativan doses being moved back to every 6 hours last night we were hoping that her withdrawal symptoms would reside. Kinley threw up again, for the second time in 24 hours, around 11:30 am while she was still in her bouncer. Ashley is guessing that it was about 10 ccs again (the same amount as last night). Ashley moves Kinley back into her bed where she is able to get Kinley out of her dirty outfit and, unfortunately for Kinley, she also has to remove her NG tube. After Ashley gives Kinley a quick diaper change (no poop) and gets her cleaned up she heads over to take care of the other baby she is responsible for today. Ashley returns almost immediately when Kinley emits a very loud noise from her crib that sounds like she is throwing up again. We are all happy to find that she has not thrown up, but she does have diarrhea. Kinley had exploded in her diaper. This is another sign of going through withdrawals. Poor Kinley, for having diarrhea and vomiting. And poor Ashley, for having to clean up after Kinley. After Ashley has changed Kinley's diaper, put her in a new outfit and given her a new NG tube she calls Delores (nurse practitioner)and gives her the update. Delores wants to keep everything the same until they can come by during rounds.
Nancy, the occupational therapist, returns around 1:00 pm to help work on Ki
nley's head control, examine her muscle tone and work on some oral stimulation to try and get her ready to take a bottle. The muscle tone in Kinley's legs is very good, but her arms appear to be a little lacking. They are not horrible, simply not as well toned as her legs. She will just have to work on getting her arms into better shape. One sure fire way to do that, and more importantly to build muscle control in Kinley's neck, is "tummy time." Today was Kinley's first time to lay completely on her belly. Layin
g on her belly forces her to work on lifting and turning her head. It will also encourage her to use her arms to push herself up. Nancy is very pleased with the amount of head movement Kinley can do on her own. Now it is time to move on to oral stimulation. Kathy and I know that Kinley loves her binky (pacifier), but she needs to show Nancy in order to move towards having a bottle. Nancy gives Kinley her binky and once again, she is very pleased with what she sees. Nancy will plan to come back later today or tomorrow and have Kinley try her first bottle feed.
Lucky us! It is 3:00 pm and Nancy is back to attempt giving Kinley her first bottle feeding ever. Before starting, Nancy lays Kinley on her side because it will help Kinley be more comfortable with swallowing. Laying on her side will let the milk pool in her cheek and allow her to swallow when she is comfortable. That way the milk does not go straight from the bottle nipple to her throat and possibly cause her to choke. Nancy's goal is to get Kinley to take 5 to 8 ccs from the bottle. It is not a fast feeding because Nancy wants to make sure that Kinley does not choke on or aspirate her milk. Aspirating is when a liquid is inhaled into the lungs. Kinley is a good girl and ends up taking all 8 ccs without any issues. Nancy will return tomorrow to attempt a second bottle feeding.
rib to say hi, but she was not there. It took us a second to realize that she was in a bouncer seat! This is the first time Kinley has ever been out of her crib without being held by someone. Ashley, Kinly's nurse today, told us that the OT (occupational therapist) stopped by to see Kinley this morning and said it would be good to get Kinley out of bed and into a chair so that she could work on head control. Ashley also told us that the OT planned to come back a little later to work with Kinley while we were here so we can learn some exercises to do with Kinley on our own.Ashley also got us caught up on the events we missed from last night and earlier this morning. She told us that Kinley had not pooped or thrown up since yesterday and that we haven't missed rounds yet. Delores, Kinley's neonatal nurse practitioner, did stop by to briefly see Kinley and she wrote a few orders while she was there. Delores increased Kinley's feedings to 15 cc/hr and decreased the amount of nutrition that Kinley is getting through her IVs. Now Kinley is getting more nutrition from her feedings than through her IV, so that is pretty good.
With Kinley's methadone and ativan doses being moved back to every 6 hours last night we were hoping that her withdrawal symptoms would reside. Kinley threw up again, for the second time in 24 hours, around 11:30 am while she was still in her bouncer. Ashley is guessing that it was about 10 ccs again (the same amount as last night). Ashley moves Kinley back into her bed where she is able to get Kinley out of her dirty outfit and, unfortunately for Kinley, she also has to remove her NG tube. After Ashley gives Kinley a quick diaper change (no poop) and gets her cleaned up she heads over to take care of the other baby she is responsible for today. Ashley returns almost immediately when Kinley emits a very loud noise from her crib that sounds like she is throwing up again. We are all happy to find that she has not thrown up, but she does have diarrhea. Kinley had exploded in her diaper. This is another sign of going through withdrawals. Poor Kinley, for having diarrhea and vomiting. And poor Ashley, for having to clean up after Kinley. After Ashley has changed Kinley's diaper, put her in a new outfit and given her a new NG tube she calls Delores (nurse practitioner)and gives her the update. Delores wants to keep everything the same until they can come by during rounds.
Nancy, the occupational therapist, returns around 1:00 pm to help work on Ki
nley's head control, examine her muscle tone and work on some oral stimulation to try and get her ready to take a bottle. The muscle tone in Kinley's legs is very good, but her arms appear to be a little lacking. They are not horrible, simply not as well toned as her legs. She will just have to work on getting her arms into better shape. One sure fire way to do that, and more importantly to build muscle control in Kinley's neck, is "tummy time." Today was Kinley's first time to lay completely on her belly. Layin
g on her belly forces her to work on lifting and turning her head. It will also encourage her to use her arms to push herself up. Nancy is very pleased with the amount of head movement Kinley can do on her own. Now it is time to move on to oral stimulation. Kathy and I know that Kinley loves her binky (pacifier), but she needs to show Nancy in order to move towards having a bottle. Nancy gives Kinley her binky and once again, she is very pleased with what she sees. Nancy will plan to come back later today or tomorrow and have Kinley try her first bottle feed.Lucky us! It is 3:00 pm and Nancy is back to attempt giving Kinley her first bottle feeding ever. Before starting, Nancy lays Kinley on her side because it will help Kinley be more comfortable with swallowing. Laying on her side will let the milk pool in her cheek and allow her to swallow when she is comfortable. That way the milk does not go straight from the bottle nipple to her throat and possibly cause her to choke. Nancy's goal is to get Kinley to take 5 to 8 ccs from the bottle. It is not a fast feeding because Nancy wants to make sure that Kinley does not choke on or aspirate her milk. Aspirating is when a liquid is inhaled into the lungs. Kinley is a good girl and ends up taking all 8 ccs without any issues. Nancy will return tomorrow to attempt a second bottle feeding.
Tuesday, July 15th - My First Vomit
I returned after the evening shift change to find that Kinley still has not pooed. Mary, Kinley's night nurse, said that she was gagging a little bit during the shift change so she sat her up for a little bit and the gagging past. It did not pass for long though because around 8:30 pm Kinley starting gagging again. Mary sat Kinley up to try and help it pass, but it was too late, Kinley threw up all over her bed. Mary assured me that it looked like a lot more than it really was. She was guessing that it was only 10 ccs of vomit and she was pretty sure that it was caused by withdrawals and not from being overfed. I felt so bad for Kinley, but she is just so gosh darn cute. I hated the fact that she was not feeling well, but the look on her face was pure bewilderment on what had just happened. It took a little time to process and once she realized that it was not fun she started crying. I am sure that she felt much better after emptying her stomach so it did not take long to calm her down, but the calm could only last a short while. Kinley had thrown up her NG tube and it needed to be replaced. Needless to say, Kinley is not a huge fan of having tubes shoved up her nose, but after a few minutes of sneezing (and cleaning up by Mary) everything was back to normal.
During her little vomiting episode Kinley also had her diaper changed (twice because she immedialtely peed in her new diaper), was weighed and had her outfit changed.
I thought that Kinley would fall right to sleep after her "exciting" evening, but she was wide awake. So I decided to take advantage of her being awake and gave her a little more tummy time with daddy. We have not had a professionals opinion, but I feel that Kinley is doing really well with moving her head on her own. While I was holding Kinley, Mary (Kinley's night nurse) called Mary (the nurse practitioner) to inform her of Kinley's night so far. Together they decided that the change in Kinley's methadone and ativan frequency (every 6 hours to every 8 hours) and how it was given (through the NG rather than IV) was too much for her and she is having withdrawals. They will move the frequency of her doses back to every 6 hours, but keep giving them through her NG tube.
During her little vomiting episode Kinley also had her diaper changed (twice because she immedialtely peed in her new diaper), was weighed and had her outfit changed.
I thought that Kinley would fall right to sleep after her "exciting" evening, but she was wide awake. So I decided to take advantage of her being awake and gave her a little more tummy time with daddy. We have not had a professionals opinion, but I feel that Kinley is doing really well with moving her head on her own. While I was holding Kinley, Mary (Kinley's night nurse) called Mary (the nurse practitioner) to inform her of Kinley's night so far. Together they decided that the change in Kinley's methadone and ativan frequency (every 6 hours to every 8 hours) and how it was given (through the NG rather than IV) was too much for her and she is having withdrawals. They will move the frequency of her doses back to every 6 hours, but keep giving them through her NG tube.
Tuesday, July 15, 2008
Tuesday, July 15th - Let Tummy Time Begin
Update from this morning's rounds: Kinley's oxygen flow (0.5 liters per minute) and support (21%) will remain the same today. We won't be able to get rid of that nasal cannula just yet, maybe tomorrow. Dr. C would like to see Kinley's average blood oxygen saturation a bit higher before removing it completely. Yesterday Kinley's blood oxygen saturation was in the low to mid 90s. All of Kinley's medications (methadone, ativan and erythromycin) will maintain the same dosage today, but the frequency of her methadone and ativan will be moved from every 6 hours to every 8 hours. Also, going forward both her methadone and ativan doses will be given through her NG tube instead of through her Mid line. This means that Kinley will be responsible for absorbing her drugs through her digestive tract. Speaking of digestion, Kinley has not had any more poopy diapers since yesterday afternoon, but that shouldn't stop her from eating more. Her residuals from yesterday and last night ranged from 2 to 12 ccs with the average being around 10 ccs. This is pretty good because it means the only thing remaining in her stomach is her last hour's worth of food. So Dr. C has decided to have Kinley's continual feed increased from 9 ccs per hour to 13 ccs per hour.
Occupational therapy (OT) made it by today to evaluate Kinley's range of motion. Everything they saw looked good, but they never did anything to test Kinley's oral stimulation to see how soon she might be able to begin eating orally. Hopefully they will do that tomorrow. They did show Kathy a few stretches that we can do with Kinley to make sure she maintains her range of motion though. And the big news is that we can start doing "tummy time" with Kinley. Tummy time, as you are probably already thinking, is time that babies spend on their bellies. But it is important because it helps babies increase the muscle control in their necks. Tummy time for now will simply consist of Kathy or I holding Kinley to our chest and letting her work on lifting and turning her head.
Kinley is doing well with her oxygen flow and support. She has been keeping her blood oxygen saturation consistently in the mid to high 90s and she occasionally hits 100%.
At 5:00 pm, Katie (Kinley's nurse) does her first residual check on Kinley since she has started feeding at 13 ccs per hour. Kinley had 20 ccs of residual, but that is still within range to continue her feedings. It is not shocking that Kinley's residual was so high since she just started on a larger feeding schedule.
Still no poop, except for one tiny spot on one of her diapers. Maybe Kinley is simply waiting for right before the evening shift change. That is what she has done the past two days. It is hard to believe that I am saying this, and I am sure that it will change in the future, but we are always so happy when Kinley has a poopy diaper.
Occupational therapy (OT) made it by today to evaluate Kinley's range of motion. Everything they saw looked good, but they never did anything to test Kinley's oral stimulation to see how soon she might be able to begin eating orally. Hopefully they will do that tomorrow. They did show Kathy a few stretches that we can do with Kinley to make sure she maintains her range of motion though. And the big news is that we can start doing "tummy time" with Kinley. Tummy time, as you are probably already thinking, is time that babies spend on their bellies. But it is important because it helps babies increase the muscle control in their necks. Tummy time for now will simply consist of Kathy or I holding Kinley to our chest and letting her work on lifting and turning her head.
Kinley is doing well with her oxygen flow and support. She has been keeping her blood oxygen saturation consistently in the mid to high 90s and she occasionally hits 100%.
At 5:00 pm, Katie (Kinley's nurse) does her first residual check on Kinley since she has started feeding at 13 ccs per hour. Kinley had 20 ccs of residual, but that is still within range to continue her feedings. It is not shocking that Kinley's residual was so high since she just started on a larger feeding schedule.
Still no poop, except for one tiny spot on one of her diapers. Maybe Kinley is simply waiting for right before the evening shift change. That is what she has done the past two days. It is hard to believe that I am saying this, and I am sure that it will change in the future, but we are always so happy when Kinley has a poopy diaper.
Monday, July 14, 2008
Monday, July 14th - More Food = Poop
At 1:00 pm, Katie changed Kinley's continual feed to 9 ccs per hour. Kinley's residual before this change was only 7 ccs, so we know that Kinley has been processing her 7 ccs per hour feeding.
At 5:30 pm, Katie checked Kinley's residual to see how she has been handling her newest feeding rate of 9 ccs per hour. Her residual was 8.5 ccs. This is good because it means the only food remaining in Kinley's stomach is from the last hour of her feeding.
Kinley finally had another dirty diaper. Once again, it was right before shift change, but this time Kathy and I got to change it. (We need a lot of practice.) Long story short, Kinley continued to poop (a lot) and pee through 3 diapers before we could get her cleaned up and into a dry diaper. It probably would have been easier if Kathy and I weren't laughing so much. Kinley was completely relaxed the entire time and that is probably why she just kept "going." When our diaper changing fiasco was finally over, Kinley went right to sleep. I am sure that she was pretty worn out. Not only from pooping so much, but from watching mom and dad fumble around for so long and from coming to the realization that we (Kathy and I) will not have diaper changing back-up after she comes home.
At 5:30 pm, Katie checked Kinley's residual to see how she has been handling her newest feeding rate of 9 ccs per hour. Her residual was 8.5 ccs. This is good because it means the only food remaining in Kinley's stomach is from the last hour of her feeding.
Kinley finally had another dirty diaper. Once again, it was right before shift change, but this time Kathy and I got to change it. (We need a lot of practice.) Long story short, Kinley continued to poop (a lot) and pee through 3 diapers before we could get her cleaned up and into a dry diaper. It probably would have been easier if Kathy and I weren't laughing so much. Kinley was completely relaxed the entire time and that is probably why she just kept "going." When our diaper changing fiasco was finally over, Kinley went right to sleep. I am sure that she was pretty worn out. Not only from pooping so much, but from watching mom and dad fumble around for so long and from coming to the realization that we (Kathy and I) will not have diaper changing back-up after she comes home.
Monday, July 14th - Get Ready Tummy!
It has been a while since Kinley has had a blood gas test, but she got one this morning and everything (blood Ph, CO2 and O2 levels) looked great.
Since Kinley had a pretty restful day yesterday Dr. C is going to test her today. During rounds Dr. C placed an order to have Kinley's oxygen flow turned down from 1 liter per minute to 0.5 liters per minute. Also, Dr. C is having both the methadone and ativan dosages decreased by 10%. She will leave the erythromycin where it is since Kinley has not had a poopy diaper since yesterday right before evening shift change. And for the BIG change of the day, Kinley's feedings. As of this morning Kinley was still receiving 5 ccs per hour on a continual feed. Today it will be increased to 7 ccs per hour at 11:00 am and then increased again to 9 ccs per hour at 1:00 pm. Going forward, as long as Kinley's residuals are not green or greater than 20 ccs they will continue her feedings.
Kinley's oxygen flow has been at 0.5 liters per minute all morning and she has been keeping her blood oxygen saturation in the mid to low 90s. This is good. As long as she is regularly between 92% and 96% they are comfortable weaning her oxygen flow. Also, Kinley's continual feed is now officially at 7 ccs per hour. Katie, Kinley's day nurse, will check her residual at 1:00 pm when her feeding is increased again to 9 ccs per hour.
Since Kinley had a pretty restful day yesterday Dr. C is going to test her today. During rounds Dr. C placed an order to have Kinley's oxygen flow turned down from 1 liter per minute to 0.5 liters per minute. Also, Dr. C is having both the methadone and ativan dosages decreased by 10%. She will leave the erythromycin where it is since Kinley has not had a poopy diaper since yesterday right before evening shift change. And for the BIG change of the day, Kinley's feedings. As of this morning Kinley was still receiving 5 ccs per hour on a continual feed. Today it will be increased to 7 ccs per hour at 11:00 am and then increased again to 9 ccs per hour at 1:00 pm. Going forward, as long as Kinley's residuals are not green or greater than 20 ccs they will continue her feedings.
Kinley's oxygen flow has been at 0.5 liters per minute all morning and she has been keeping her blood oxygen saturation in the mid to low 90s. This is good. As long as she is regularly between 92% and 96% they are comfortable weaning her oxygen flow. Also, Kinley's continual feed is now officially at 7 ccs per hour. Katie, Kinley's day nurse, will check her residual at 1:00 pm when her feeding is increased again to 9 ccs per hour.
Sunday, July 13, 2008
Sunday, July 13th - More Food, Less Flow
When I arrived I found Holly watching over our baby girl. I had missed rounds so Holly got me caught up on all of the changes for today. Kinley's continual feedings were increased at 9:00 am from 4 ccs per hour to 5 ccs per hour. The residual in her stomach from before this feeding change was zero ccs. Kinley must have been hungry this morning. Kinley's oxygen support is still at 21%, but the flow of oxygen through her nasal cannula has been lowered from 2 liters per minute to 1.5 liters per minute. And by looking at her numbers she is doing really well. She is consistently keeping her blood oxygen saturation in the 90s and it is mainly in the mid 90s. Since they have weaned both the methadone and ativan the past two days they are going to leave them alone today. The same goes for the erythromycin, no changes. Unfortunately Kinley did not have a poopy diaper yesterday or last night. Hopefully she will have one today or they will probably need to give her another glycerin suppository. Holly ends her update with some good news, Kinley was weighed again and as of 1:00 am last night she weighed 9 pounds 12 ounces. I do not know if this is a good weight gain for the amount of nutrition she is receiving, but at least she is gaining and not losing.
Continuing a good trend, Kinley's residual at 1:00 pm was only 0.5 ccs and her residual at 5:00 pm was a mere 1.5 ccs.
Yea!!! Mommy's here! Kathy arrived just before the evening shift change. This week was Kathy's first full week back at work and she has worked very hard to make sure and see Kinley every day. It has not been an easy week, but I know that it will definitely be worth it when Kathy can be there when Kinley is at home.
After Kathy arrives (and says hello to Kinley) and before the evening shift change Holly tells us that they will decrease Kinley's oxygen flow to 1 liter per hour over the night because she is doing so well at keeping her blood oxygen saturation up. Since Kinley still has not pooped though, they will keep her feedings at 5 ccs per hour until she does. They have ordered another glycerin suppository for tonight to help move things along. While Holly is telling us about Kinley's feedings and pooping, Kinley gets a very serious look and then turns her whole face red. We all joke that she was working on making a "dirty" diaper so she could get more food. As Kathy and I pack up our stuff to leave for the shift change Holly decides to go ahead and check out Kinley's diaper. Unfortunately for Holly, but great for Kinley, the diaper was full. Kinley had had an explosion in her pants. Man, I can't wait for when Kinley is at home and I get those dirty diapers all to myself. (In case you don't know me, there is a good bit of sarcasm in that last sentence.)
After shift change, at 9:00 pm, Kinley's residual is checked again and it comes back with 9 ccs. Janece, the night nurse, calls it in and they decide to continue Kinley's feedings at 5 ccs per hour. We leave around 9:45 pm. It is so hard to leave when Kinley is wide awake and so cute. Below are a few pics of Kinley from when we had to leave. It is so hard to leave when she is awake.
Continuing a good trend, Kinley's residual at 1:00 pm was only 0.5 ccs and her residual at 5:00 pm was a mere 1.5 ccs.
Yea!!! Mommy's here! Kathy arrived just before the evening shift change. This week was Kathy's first full week back at work and she has worked very hard to make sure and see Kinley every day. It has not been an easy week, but I know that it will definitely be worth it when Kathy can be there when Kinley is at home.
After Kathy arrives (and says hello to Kinley) and before the evening shift change Holly tells us that they will decrease Kinley's oxygen flow to 1 liter per hour over the night because she is doing so well at keeping her blood oxygen saturation up. Since Kinley still has not pooped though, they will keep her feedings at 5 ccs per hour until she does. They have ordered another glycerin suppository for tonight to help move things along. While Holly is telling us about Kinley's feedings and pooping, Kinley gets a very serious look and then turns her whole face red. We all joke that she was working on making a "dirty" diaper so she could get more food. As Kathy and I pack up our stuff to leave for the shift change Holly decides to go ahead and check out Kinley's diaper. Unfortunately for Holly, but great for Kinley, the diaper was full. Kinley had had an explosion in her pants. Man, I can't wait for when Kinley is at home and I get those dirty diapers all to myself. (In case you don't know me, there is a good bit of sarcasm in that last sentence.)
After shift change, at 9:00 pm, Kinley's residual is checked again and it comes back with 9 ccs. Janece, the night nurse, calls it in and they decide to continue Kinley's feedings at 5 ccs per hour. We leave around 9:45 pm. It is so hard to leave when Kinley is wide awake and so cute. Below are a few pics of Kinley from when we had to leave. It is so hard to leave when she is awake.
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