The last week has gone pretty well in terms of Eli's health. We are very happy to have him home but it has been a lot of work. The nights have been especially rough as we cope with putting Eli on the mask while trying to get him settled down every night.
During the week Eli had a pediatrician's visit and a pulmonary clinic visit down at Seattle Children's. Both appointments went very well. Eli is maintaining his CO2 at home and his bicarbonate levels are holding steady. The only thing to note was a slightly lower hematocrit level. If you've been following the blog you know that we've struggled with some blood issues and we even had Eli transfused at one point to overcome the hematocrit issues. For some reason we just can't seem to put the hematocrit issues behind us. Eli's retic count is up in a solid range so there wasn't a lot of concern at the clinic but it's something that we are going to need to watch for the long term. Maybe the low hematocrit levels have something to do with Eli's overall condition. Since we don't have a diagnosis we're still looking for any possible explanation but so far we haven't been able to nail anything down.
The biggest challenge right now is getting enough sleep to be functional. As any parent knows, there's a period of time after you bring your baby home when you long for a solid night of rest. We pushed that off a little when we had Eli in the hospital because we could head up to the sleeper room to get some uninterrupted sleep. Now that we have Eli home we have been dealing with the issues that lack of sleep brings. Everyone has been a little cranky this last week but we're working through it and we're getting the job done with Eli.
On most days when we take Eli off the BiPAP we take a quick sample of his CO2 level using the end tidal CO2 monitor. I think we're averaging something in the low 50's most of the time and we even had a reading in the high 40's one morning. Eli's next clinic visit is about 3 weeks out so we have some time between the official check points but we feel like things are going well.
I'll try to post another update soon so stay tuned and thanks for your continuing support and prayers.
Sunday, May 23, 2010
Wednesday, May 12, 2010
05/12/10 A Great Night
We had a great night last night. Eli slept through a good portion of the night and we actually got a decent amount of sleep. Hopefully this will be the start of a trend.
We have an end tidal CO2 monitor at home and we've been sampling Eli's CO2 levels. Last night we had readings in the mid 50's. This morning Eli was sitting in the low 50's. We're hoping the end tidal monitor is accurate because it shows us that Eli's CO2 levels have been very stable at home.
We have an end tidal CO2 monitor at home and we've been sampling Eli's CO2 levels. Last night we had readings in the mid 50's. This morning Eli was sitting in the low 50's. We're hoping the end tidal monitor is accurate because it shows us that Eli's CO2 levels have been very stable at home.
Tuesday, May 11, 2010
05/11/10 Hard Work
Eli's first night home was anything but relaxing. He fussed a lot last night and I don't think any of us got much sleep. Eli is getting really strong which is fantastic but it's trouble too. He can move his head enough to wiggle out of his BiPAP mask if he wants to and when he is worked up there's no way you're going to put the mask on and keep it there.
The transition home has been a little rough since we didn't get a lot of sleep last night but we're still very happy to have Eli home. We missed out on the sleepless nights that come with the first several months of parenthood because Eli was in the NICU and we could hop up to the sleeper room to catch 6 or 7 hours of uninterrupted rest when we needed to. Now that we're caring for Eli at home we have to do all the things the nurses were doing in the hospital. It makes for a very busy evening especially when you're tired and trying to get a little sleep. I suppose the NICU spoiled us a little so it's time to take our lumps. It's not that I'm complaining. We knew the price we'd pay in terms of sleep when Eli was born and we paid it in full with Ian and Obie but somehow we forgot what it would be like. I remember feeling that way when Obie was born and I remember thinking back then, "I'm getting too old for this." Fast forward 2 years and we have another little one demanding our attention in the middle of the night and now I'm thinking, "I'm REALLY too old for this!" On a normal night we probably get between 7 and 8 hours of sleep and I probably drink 16 oz. of coffee in the morning before I start to feel "normal". If I push the limit I can survive on 5 hours of sleep but I'll need about 32 oz. of very strong coffee in the morning before I'm capable of opening a spreadsheet. (That's a little accounting humor for you)
We're hoping for a smoother night tonight but we'll survive. Tomorrow Eli goes in to see Dr. Shlafer, our pediatrician, and on Thursday he will go back to Seattle Children's for the pulmonary clinic. We will probably have weekly pulmonary clinics for the foreseeable future and fairly regular pediatric visits. We plan on taking Eli to another neurologist for a second opinion but I don't think there's any rush right now. Dr. Shlafer has recommended someone in Bellevue and we'll discuss it with him during Eli's appointment tomorrow. It will be nice to have someone review the neurological tests and findings and see if there's anything else we should consider doing to find a diagnosis. It's still frustrating that we don't have a final answer but we'll live with it as long as Eli is home and getting stronger every day.
The transition home has been a little rough since we didn't get a lot of sleep last night but we're still very happy to have Eli home. We missed out on the sleepless nights that come with the first several months of parenthood because Eli was in the NICU and we could hop up to the sleeper room to catch 6 or 7 hours of uninterrupted rest when we needed to. Now that we're caring for Eli at home we have to do all the things the nurses were doing in the hospital. It makes for a very busy evening especially when you're tired and trying to get a little sleep. I suppose the NICU spoiled us a little so it's time to take our lumps. It's not that I'm complaining. We knew the price we'd pay in terms of sleep when Eli was born and we paid it in full with Ian and Obie but somehow we forgot what it would be like. I remember feeling that way when Obie was born and I remember thinking back then, "I'm getting too old for this." Fast forward 2 years and we have another little one demanding our attention in the middle of the night and now I'm thinking, "I'm REALLY too old for this!" On a normal night we probably get between 7 and 8 hours of sleep and I probably drink 16 oz. of coffee in the morning before I start to feel "normal". If I push the limit I can survive on 5 hours of sleep but I'll need about 32 oz. of very strong coffee in the morning before I'm capable of opening a spreadsheet. (That's a little accounting humor for you)
We're hoping for a smoother night tonight but we'll survive. Tomorrow Eli goes in to see Dr. Shlafer, our pediatrician, and on Thursday he will go back to Seattle Children's for the pulmonary clinic. We will probably have weekly pulmonary clinics for the foreseeable future and fairly regular pediatric visits. We plan on taking Eli to another neurologist for a second opinion but I don't think there's any rush right now. Dr. Shlafer has recommended someone in Bellevue and we'll discuss it with him during Eli's appointment tomorrow. It will be nice to have someone review the neurological tests and findings and see if there's anything else we should consider doing to find a diagnosis. It's still frustrating that we don't have a final answer but we'll live with it as long as Eli is home and getting stronger every day.
Monday, May 10, 2010
05/10/10 Home at Last
Today started off rough. Eli had another CO2 reading at 6:00am and the reading was a dismal 66. I told Patricia we still needed to push for home. The reading was take after Eli was off his BiPAP for a while and he was having some problems keeping his oxygen saturation level up. We really need to press to get home. We could sit in the hospital for weeks like this and there's no point.
Finally by late morning Patricia calls me with the good news. The attending on the floor had a discussion with our pulmonologist and they both agreed there was no point in chasing a number. They are going to discharge Eli! Finally!
We realize we're in for a lot of work at home but we're up for it and we feel like we can do a better job caring for Eli in the home setting than they are doing at the hospital. It's going to be a very big day for us today but like everything else in the hospital the discharge is being done on hospital time. That means Eli is stuck there until the late afternoon.
By the time they get all the paperwork ready and they get everything set for discharge it's about 3:30pm. Patricia calls me at work to let me know they are on the way out the door. Thank God! My Mom and Dad came down to the hospital today to help with the transition. After 3 full months in the hospital there's a lot of crap to haul back home. Add on top of that all the medical equipment and supplies we've accumulated and there's a literal truck load of stuff to bring to the house.
By 4:30pm Eli is home! It has certainly been a long time coming and we're grateful that we're made it this far. There's a lot of stuff to get set up and Patricia and my Mom get to work. They manage to get Eli settled in without any problems. He's doing great and he looks like he is loving the chaos and excitement his two big brothers are creating.
I finally arrive home around 6:30pm. The home care delivery service is in the driveway delivering the oxygen "mother tank". I walked in just in time to see how it all works and to get the final instructions but it looks like it will be pretty easy.
Dinner is on the stove thanks to our neighbor Rebecca and the boys are down with Grandma eating. I can't believe Eli is finally home! We've been waiting for this day for so long it's like Christmas for us. I think everyone knows how much work it's been to get here and we know it's going to take a lot of love and hard work to keep Eli here but after the process we've been through I think we have plenty of love and commitment to spare.
I'll try to get some pictures out in the next day or two and I owe everyone a thank you post. There have been so many people who have helped us out along the way it's hard to even contemplate thanking everyone but I'm going to try. The biggest challenge is simply not forgetting someone because there have been so many wonderful people in our life recently. Let me start simply by saying THANK YOU! I'll start working on my thank you post soon. In the meantime stay tuned because we still have a long way to go. Eli is home but he isn't 100% so we still need your good thoughts and prayers to speed his development and eventual recovery.
I'm going to go spend some time with my three boys.
God Bless and Merry Christmas (for us!)
Finally by late morning Patricia calls me with the good news. The attending on the floor had a discussion with our pulmonologist and they both agreed there was no point in chasing a number. They are going to discharge Eli! Finally!
We realize we're in for a lot of work at home but we're up for it and we feel like we can do a better job caring for Eli in the home setting than they are doing at the hospital. It's going to be a very big day for us today but like everything else in the hospital the discharge is being done on hospital time. That means Eli is stuck there until the late afternoon.
By the time they get all the paperwork ready and they get everything set for discharge it's about 3:30pm. Patricia calls me at work to let me know they are on the way out the door. Thank God! My Mom and Dad came down to the hospital today to help with the transition. After 3 full months in the hospital there's a lot of crap to haul back home. Add on top of that all the medical equipment and supplies we've accumulated and there's a literal truck load of stuff to bring to the house.
By 4:30pm Eli is home! It has certainly been a long time coming and we're grateful that we're made it this far. There's a lot of stuff to get set up and Patricia and my Mom get to work. They manage to get Eli settled in without any problems. He's doing great and he looks like he is loving the chaos and excitement his two big brothers are creating.
I finally arrive home around 6:30pm. The home care delivery service is in the driveway delivering the oxygen "mother tank". I walked in just in time to see how it all works and to get the final instructions but it looks like it will be pretty easy.
Dinner is on the stove thanks to our neighbor Rebecca and the boys are down with Grandma eating. I can't believe Eli is finally home! We've been waiting for this day for so long it's like Christmas for us. I think everyone knows how much work it's been to get here and we know it's going to take a lot of love and hard work to keep Eli here but after the process we've been through I think we have plenty of love and commitment to spare.
I'll try to get some pictures out in the next day or two and I owe everyone a thank you post. There have been so many people who have helped us out along the way it's hard to even contemplate thanking everyone but I'm going to try. The biggest challenge is simply not forgetting someone because there have been so many wonderful people in our life recently. Let me start simply by saying THANK YOU! I'll start working on my thank you post soon. In the meantime stay tuned because we still have a long way to go. Eli is home but he isn't 100% so we still need your good thoughts and prayers to speed his development and eventual recovery.
I'm going to go spend some time with my three boys.
God Bless and Merry Christmas (for us!)
Sunday, May 9, 2010
05/09/10 Mother's Day
With yesterday's hope comes the expectation that we're going to make it out of the hospital today. This morning at 6:00am they draw some more blood for another CO2 test and the result is a 58. They want to observe Eli until Monday. I think this is a never ending cycle. Once again we've shown that Eli is stable within the range he has been sitting at for over a month now.
We had really been hoping and praying that Eli would be able to come home on Mother's day but I think those hopes and prayers went unanswered this time around. Our Mother's day consisted of Patricia spending the entire day with Eli in the hospital. Late in the afternoon I brought the boys to the hospital so we could all have a nice Mother's day dinner together. We stopped to pick up a pizza on the way in and we brought flowers and some candy for mom. It wasn't the best Mother's day ever but it was one we'll all remember.
After dinner I took the boys home and we left Patricia at the hospital with Eli with hopes that he would have a good night and we would be able to take him home on Monday.
We had really been hoping and praying that Eli would be able to come home on Mother's day but I think those hopes and prayers went unanswered this time around. Our Mother's day consisted of Patricia spending the entire day with Eli in the hospital. Late in the afternoon I brought the boys to the hospital so we could all have a nice Mother's day dinner together. We stopped to pick up a pizza on the way in and we brought flowers and some candy for mom. It wasn't the best Mother's day ever but it was one we'll all remember.
After dinner I took the boys home and we left Patricia at the hospital with Eli with hopes that he would have a good night and we would be able to take him home on Monday.
Saturday, May 8, 2010
05/08/10 New Hope
We finally get a break. Eli had a good night last night and his CO2 level at 6:00am this morning after coming off the BiPAP is 48. The last three weeks were not completely meaningless. Eli has his ups and downs when it comes to the CO2 level but we've shown everyone he is capable of bringing his CO2 levels down with a good night on the BiPAP.
We are hopeful that we won't have to repeat the last three weeks because we've switched over to a new mask. The new mask fits in Eli's nose a little better than the last one but the general mechanics are all the same. We spent three weeks in the NICU proving to everyone that Eli is stable and can maintain his CO2 levels at a consistent level. In the NICU Eli's CO2 level bounced around a little too. We were up to 62 or 63 and down to 49 at various points. Most of the time his CO2 was sitting in the mid 50's. Maybe the seal on the new mask will help us drive the CO2 levels down to the low 50's or even the high 40's like last night but the point is he's stable and we've proven it.
If we can string a couple good nights in a row then I think we can press to have Eli discharged. Tomorrow is Mother's Day and it would be nice to give Patricia an opportunity to hold her baby at home.
We are hopeful that we won't have to repeat the last three weeks because we've switched over to a new mask. The new mask fits in Eli's nose a little better than the last one but the general mechanics are all the same. We spent three weeks in the NICU proving to everyone that Eli is stable and can maintain his CO2 levels at a consistent level. In the NICU Eli's CO2 level bounced around a little too. We were up to 62 or 63 and down to 49 at various points. Most of the time his CO2 was sitting in the mid 50's. Maybe the seal on the new mask will help us drive the CO2 levels down to the low 50's or even the high 40's like last night but the point is he's stable and we've proven it.
If we can string a couple good nights in a row then I think we can press to have Eli discharged. Tomorrow is Mother's Day and it would be nice to give Patricia an opportunity to hold her baby at home.
Friday, May 7, 2010
05/07/10 Bad News
Once again the sleep study was a complete waste of time and money. Eli had a very restless night and he didn't get a lot of sleep. Not only was the sleep study a total waste but Eli's CO2 reading this morning was in the high 60's so it's clear they aren't going to let us leave the hospital this weekend.
I went to the hospital after work today and found an assorted team of doctors hovering over Eli again. They are examining him without any respiratory support. Our pulmonologist, Dr. Makris, is listening to Eli and trying to figure out a way to keep him from obstructing his airway. Eli's low muscle tone causes his throat to collapse a little which results in and obstructed airway.
They have been examining Eli and watching him on the nasal pillows and they have now deemed the nasal pillow mask to be a failure. We go three weeks in the NICU with stable CO2 levels and then move to the floor for 4 nights and they declare the mask and respiratory support we've been giving Eli a failure. I'm not sure how that happens. Eli has been on the floor for 4 nights. His first night was pretty rough by all accounts. He was in a new environment and on a new machine. The next day he was circumcised so he probably had some residual pain on night two. On day three they decide to monkey with his mask and respiratory support. Regardless of their tinkering Eli seemed to have a fairly decent night the third night. Night four was the sleep study. Since we've moved to the floor we haven't had one single night where there hasn't been something going on that would be a disruption to Eli's sleep. Maybe Wednesday night but I think all the tinkering with his respiratory support in the afternoon impacted him to some degree.
During our discussions with the doctors there was another concerted push to move forward with the tracheostomy. I just don't think we should do it. We don't have a diagnosis and Eli seems to be getting stronger with every week. The tracheostomy route would leave us sitting in the hospital for another 8 weeks. What's going on right now with Eli just doesn't feel right to me. They have every incentive to keep Eli in the hospital and no incentive to let us take him home. I'm afraid this nightmare is going to keep going on and on and on. I expressed my frustration again with the process and our desire not to have the tracheostomy done. We're not ready to throw in the towel yet. In another 8 weeks Eli will be stronger and his breathing has continued to improve so the risks involved with the tracheostomy don't seem worth the benefits.
The compromise for the short term is another mask. We rigged something that we feel should work for Eli but now we have to go through the process of proving Eli can be stable on this new solution. I think I wrote about our concerns with "starting over" in a previous blog and now those fears are realized. Once again we're getting stone walled when it comes to laying out a plan for Eli. Do we need to prove he's stable for a couple days? A week? Two weeks? The answer is always non-committal. I'm not sure I can take much more of the "system". I've been trying to fight it single handedly for the last month or so and I think I've failed which means I'm failing Eli. I don't think the care they are giving Eli is anything more than we could do for Eli at home so I'm starting to think we need a new approach to fight the "system".
After talking it over a little with my Mom tonight I think we're going to give the hospital and this new mask solution a couple days. If it's managing Eli's CO2 and holding his level in the 50's then we're going to ask to be discharged. If they won't let us go then we'll have to explore some other alternatives.
Several years ago my Grandmother had a stroke and we had to put her in a nursing home for full time care. My Mom and Dad tried for a year to manage her care but there were numerous issues. My Mom told me they had to bring in an Ombudsman to help them advocate for my Grandmother's care and it made dealing with the medical staff and the bureaucracy of the nursing home a lot easier to handle. Maybe that's what we need to help us deal with Seattle Children's. I don't think the doctors there are bad or that they're being malicious but the fact is they are unable to find a solution that will help Eli and allow us to take him home. We can't live in the hospital indefinitely and they can't even communicate a timeline to us for when we might be able to take Eli home. The whole situation is unacceptable and I think we need some help to resolve it.
I went to the hospital after work today and found an assorted team of doctors hovering over Eli again. They are examining him without any respiratory support. Our pulmonologist, Dr. Makris, is listening to Eli and trying to figure out a way to keep him from obstructing his airway. Eli's low muscle tone causes his throat to collapse a little which results in and obstructed airway.
They have been examining Eli and watching him on the nasal pillows and they have now deemed the nasal pillow mask to be a failure. We go three weeks in the NICU with stable CO2 levels and then move to the floor for 4 nights and they declare the mask and respiratory support we've been giving Eli a failure. I'm not sure how that happens. Eli has been on the floor for 4 nights. His first night was pretty rough by all accounts. He was in a new environment and on a new machine. The next day he was circumcised so he probably had some residual pain on night two. On day three they decide to monkey with his mask and respiratory support. Regardless of their tinkering Eli seemed to have a fairly decent night the third night. Night four was the sleep study. Since we've moved to the floor we haven't had one single night where there hasn't been something going on that would be a disruption to Eli's sleep. Maybe Wednesday night but I think all the tinkering with his respiratory support in the afternoon impacted him to some degree.
During our discussions with the doctors there was another concerted push to move forward with the tracheostomy. I just don't think we should do it. We don't have a diagnosis and Eli seems to be getting stronger with every week. The tracheostomy route would leave us sitting in the hospital for another 8 weeks. What's going on right now with Eli just doesn't feel right to me. They have every incentive to keep Eli in the hospital and no incentive to let us take him home. I'm afraid this nightmare is going to keep going on and on and on. I expressed my frustration again with the process and our desire not to have the tracheostomy done. We're not ready to throw in the towel yet. In another 8 weeks Eli will be stronger and his breathing has continued to improve so the risks involved with the tracheostomy don't seem worth the benefits.
The compromise for the short term is another mask. We rigged something that we feel should work for Eli but now we have to go through the process of proving Eli can be stable on this new solution. I think I wrote about our concerns with "starting over" in a previous blog and now those fears are realized. Once again we're getting stone walled when it comes to laying out a plan for Eli. Do we need to prove he's stable for a couple days? A week? Two weeks? The answer is always non-committal. I'm not sure I can take much more of the "system". I've been trying to fight it single handedly for the last month or so and I think I've failed which means I'm failing Eli. I don't think the care they are giving Eli is anything more than we could do for Eli at home so I'm starting to think we need a new approach to fight the "system".
After talking it over a little with my Mom tonight I think we're going to give the hospital and this new mask solution a couple days. If it's managing Eli's CO2 and holding his level in the 50's then we're going to ask to be discharged. If they won't let us go then we'll have to explore some other alternatives.
Several years ago my Grandmother had a stroke and we had to put her in a nursing home for full time care. My Mom and Dad tried for a year to manage her care but there were numerous issues. My Mom told me they had to bring in an Ombudsman to help them advocate for my Grandmother's care and it made dealing with the medical staff and the bureaucracy of the nursing home a lot easier to handle. Maybe that's what we need to help us deal with Seattle Children's. I don't think the doctors there are bad or that they're being malicious but the fact is they are unable to find a solution that will help Eli and allow us to take him home. We can't live in the hospital indefinitely and they can't even communicate a timeline to us for when we might be able to take Eli home. The whole situation is unacceptable and I think we need some help to resolve it.
Thursday, May 6, 2010
05/06/10 Training Day
Eli has another good night on the nasal pillows. We're looking forward to getting the sleep study out of the way tonight so we can move on with our plan to get Eli home. Patricia has been pushing them to release Eli before Mother's day. She deserves that. She is a good mother and she deserves to have her baby home for this special day.
Today we have training on all the home equipment scheduled for 1:00pm. I barely have enough time to wolf down a couple burgers from McDonalds on the way to the hospital. I'm really looking forward to getting Eli home so I don't have to bounce back and forth between home, work, and the hospital.
The training is pretty mundane. There's nothing really special to it but boy are there a lot of machines and supplies. They want us to have a portable oxygen unit which you can throw over your shoulder or hook onto the stroller. This will refill from the "mother" unit we'll be getting at home. Using the portable oxygen is a breeze.
Next up we have an end tidal CO2 monitor. It looks like a nasal cannula but it sucks air into the device and somehow analyzes Eli's CO2 level. We hook it up and give it a whirl and its reading 60 to 63ish. It bounces around a little and we're told it's kind of open to interpretation so we'd call that low 60's. Eli has been on nasal cannula for most of the day at this point so it seems reasonable. The machine needs to be calibrated and hooked up but it isn't too bad to figure out. By the end of the day we'll come to realize this is the most complicated of the devices which isn't saying much, they all appear fairly easy to use.
The next device is the pulse oximeter. Turn it on, hook it to the patient, and wait for the reading. There are some upper and lower limits to set on the device so it will only alarm when it reads a significant variance but I think this device is cake.
We get a home monitoring device with leads that will hook up to Eli much like the monitors in the hospital that measure heart rate, respiratory rate, etc... This machine is pretty loud making it the standby device to use when Eli is sleeping or when he is out of our line of sight. There are a couple bells and whistles on this machine but again it's not rocket science.
Next up is the actual BiPAP machine which is actually called a VPAP. I think the "V" stands for variable and I think the machine can do several different types of respiratory support. Ours is preprogrammed for Eli and it is already set up with the doctors instructions so all we need to do it turn it on and off and clean it. How easy is that?!?
Lastly, they set us up with a car battery. Yes, I'm not kidding. We have a portable car battery, charging device, and a device that converts the battery into 2 outlets. Just in case we have a power outage or something happens and we need power we have a backup. Seems like sound logical thinking and the toys are kind of cool.
I think that about covers the training. It took a total of 3.5 hours to go over everything and another 30 minutes to sign all the paperwork. Now all we need to do it cart all this stuff home. I think I'll have to recruit some Grandparents to do some moving for us when the time comes to bring Eli home!
Eli is all set to have the sleep study done tonight and Patricia is going to be on-hand to make sure it goes without a hitch. Tomorrow will be the telling day. We'll get the results of the sleep study and tomorrow we'll have 100% of Eli's care turned over to us for a trial run to make sure we can "handle" it. Good luck Patricia, I'm going to go have a beer! All joking aside we'll figure out a way to get it done. We have a lot of support at home thanks in large part to all of you guys reading this blog.
Wish us luck tonight and tomorrow!
Today we have training on all the home equipment scheduled for 1:00pm. I barely have enough time to wolf down a couple burgers from McDonalds on the way to the hospital. I'm really looking forward to getting Eli home so I don't have to bounce back and forth between home, work, and the hospital.
The training is pretty mundane. There's nothing really special to it but boy are there a lot of machines and supplies. They want us to have a portable oxygen unit which you can throw over your shoulder or hook onto the stroller. This will refill from the "mother" unit we'll be getting at home. Using the portable oxygen is a breeze.
Next up we have an end tidal CO2 monitor. It looks like a nasal cannula but it sucks air into the device and somehow analyzes Eli's CO2 level. We hook it up and give it a whirl and its reading 60 to 63ish. It bounces around a little and we're told it's kind of open to interpretation so we'd call that low 60's. Eli has been on nasal cannula for most of the day at this point so it seems reasonable. The machine needs to be calibrated and hooked up but it isn't too bad to figure out. By the end of the day we'll come to realize this is the most complicated of the devices which isn't saying much, they all appear fairly easy to use.
The next device is the pulse oximeter. Turn it on, hook it to the patient, and wait for the reading. There are some upper and lower limits to set on the device so it will only alarm when it reads a significant variance but I think this device is cake.
We get a home monitoring device with leads that will hook up to Eli much like the monitors in the hospital that measure heart rate, respiratory rate, etc... This machine is pretty loud making it the standby device to use when Eli is sleeping or when he is out of our line of sight. There are a couple bells and whistles on this machine but again it's not rocket science.
Next up is the actual BiPAP machine which is actually called a VPAP. I think the "V" stands for variable and I think the machine can do several different types of respiratory support. Ours is preprogrammed for Eli and it is already set up with the doctors instructions so all we need to do it turn it on and off and clean it. How easy is that?!?
Lastly, they set us up with a car battery. Yes, I'm not kidding. We have a portable car battery, charging device, and a device that converts the battery into 2 outlets. Just in case we have a power outage or something happens and we need power we have a backup. Seems like sound logical thinking and the toys are kind of cool.
I think that about covers the training. It took a total of 3.5 hours to go over everything and another 30 minutes to sign all the paperwork. Now all we need to do it cart all this stuff home. I think I'll have to recruit some Grandparents to do some moving for us when the time comes to bring Eli home!
Eli is all set to have the sleep study done tonight and Patricia is going to be on-hand to make sure it goes without a hitch. Tomorrow will be the telling day. We'll get the results of the sleep study and tomorrow we'll have 100% of Eli's care turned over to us for a trial run to make sure we can "handle" it. Good luck Patricia, I'm going to go have a beer! All joking aside we'll figure out a way to get it done. We have a lot of support at home thanks in large part to all of you guys reading this blog.
Wish us luck tonight and tomorrow!
Wednesday, May 5, 2010
05/05/10 Absolutely Amazing (Sarcasm)
This morning I got word that the night shift went very well. Eli slept a good portion of the night and Patricia only had to adjust his mask a handful of times. I'm hopeful that we've put the whining and complaining behind us now and we can now start to focus on what it will take to get Eli home. We also got word this morning that Eli was scheduled for the sleep study tomorrow (Thursday) night.
Patricia has been carrying the load at the hospital lately. I came down with another infection and had to go back into the doctors office to get another course of antibiotics. I've been coughing a lot so I don't think they would enjoy my company down at the hospital.
This afternoon Ian has a "program" with his preschool class and Patricia is leaving to pick him up around 11:00am. After his program he has class and after class Patricia will be heading back to the hospital.
At 3:30pm I get a call from Patricia. She informs me that one of the respiratory therapists named Jen, the same gal who made Eli a hat to secure his nasal pillows, on her own time and with her own money no less, called Patricia to let her know that the staff on the floor are messing around with Eli's respiratory support. They are trying to put him on a different mask and they've changed the BiPAP machine. She called Patricia to let her know so we could address the issue. Thank God for people like Jen who have compassion and intelligence. It's absolutely amazing (sarcasm intended) that they would feel it's appropriate to start tinkering with Eli's respiratory care after 2 nights on the floor when we've just spent the last 4 weeks in the NICU proving the mask and machine can maintain Eli's CO2 levels. I think it took me all of 3 seconds to flash to instant and unbridled white hot rage. I immediately packed up my computer and left work. Fortunately my office is about 15 minutes from the hospital so I arrived in time to address the situation. Patricia was on her way down to the hospital as well and she had the boys with her.
When I arrived they were trying to figure out a new mask. It's a good thing I had a few minutes to calm down during the drive because I didn't over react. I simply asked them what the hell they thought they were doing. The immediate response referenced the complaints over the last 2 nights and the fact that they all felt the nasal pillows didn't fit Eli properly. My retort included the fact that last night went very well. Why would we have any complaints from last night? I guess the same nurse had Eli for both nights and regardless of the fact that there were significantly fewer instances where they had to adjust the mask they felt it was appropriate to complain again this morning. I refuted the claim stating that Patricia was here all night and she said they only had to adjust the mask a handful of times. I also told them that we were not going to change masks. We had proven that this particular mask works to support Eli. We have been using it for 3+ weeks in the NICU and Eli's CO2 were stable in the 50 to 60 range on the mask regardless of the number of times they had to adjust it. Further, I said the mask fit just fine if they took the time to figure out how to use it.
Our goal at this point is to bring Eli home not spend another 3 or 4 weeks on the floor testing out every mask we can get our hands on to see if might happen to work better. I brought up the fact that we were once again messing around with Eli's respiratory care on the eve of a sleep study which caused us some issues during the last sleep study. With the last sleep study Eli was supposed to wear the nasal pillows for the study. Because they couldn't figure out how to use the pillows and because it was just too hard for them they opted to use a different mask for the sleep study. Of course this completely defeated the entire purpose of doing the sleep study but that's ok. Now we're messing around trying new masks and we have another sleep study coming up tomorrow night. I made it very clear that *if* we move forward with this sleep study we would be using the nasal pillows and we would find a way to make it work. There is no way we're going to do the sleep study if it's not going to give us some useful information. This will be Eli's 4th sleep study and 2 of the previous 3 sleep studies have yielded questionable data making us question why we're putting Eli through it and why we are asking our insurance company to pay for it.
By the time Patricia arrived I think they had received the message loud and clear. Somewhere in the conversation I had with them I asked if there was a handoff process between the NICU and the floor staff. They said yes of course there was. My response, "Well it doesn't sound like a lot of the pertinent information made it down here because it sure feels like we're reviewing a lot of decisions we made in the NICU."
Seattle Children's has changed me. I used to trust doctors and nurses and the care they recommend. Not anymore. I've seen the inner workings and this experience has taught me that medicine is more art than science. That might be hard to believe for some people because we have all these wonderful tests that give us lots of information. Tests are fine but the doctors who interpret the tests aren't using some formula that says 1 + 1 = 2. If a test comes back with this result it means X. Tests simply give them the information they need to make an educated guess. In the hospital setting you're hoping you get someone pretty damn smart with a lot of education and experience. We've been fortunate to have a couple of those doctors. The problem is they rotate out. When they leave you have another set of doctors who step in and they have their own interpretation of the data. Somehow the information and the facts you've worked hard to decipher with one doctor doesn't get passed on to the next doctor. That was the biggest shocker for me...communication is lacking! In the end you have a situation much like what we're experiencing with our move to the floor. Hey, let's try a different mask and a different BiPAP machine to see if we can get a different result. Thanks but no.
Fortunately the rest of the night goes without interference. Today just highlights for me why we need to get Eli out of the hospital now. If we don't get him out soon I'm convinced they will find a way to keep stringing us along. I think it's debatable whether they are doing this intentionally or with good intentions but in either case the net result is the same, Eli is sitting in the hospital for no valid reason while we repeat the same tests over and over again.
Patricia has been carrying the load at the hospital lately. I came down with another infection and had to go back into the doctors office to get another course of antibiotics. I've been coughing a lot so I don't think they would enjoy my company down at the hospital.
This afternoon Ian has a "program" with his preschool class and Patricia is leaving to pick him up around 11:00am. After his program he has class and after class Patricia will be heading back to the hospital.
At 3:30pm I get a call from Patricia. She informs me that one of the respiratory therapists named Jen, the same gal who made Eli a hat to secure his nasal pillows, on her own time and with her own money no less, called Patricia to let her know that the staff on the floor are messing around with Eli's respiratory support. They are trying to put him on a different mask and they've changed the BiPAP machine. She called Patricia to let her know so we could address the issue. Thank God for people like Jen who have compassion and intelligence. It's absolutely amazing (sarcasm intended) that they would feel it's appropriate to start tinkering with Eli's respiratory care after 2 nights on the floor when we've just spent the last 4 weeks in the NICU proving the mask and machine can maintain Eli's CO2 levels. I think it took me all of 3 seconds to flash to instant and unbridled white hot rage. I immediately packed up my computer and left work. Fortunately my office is about 15 minutes from the hospital so I arrived in time to address the situation. Patricia was on her way down to the hospital as well and she had the boys with her.
When I arrived they were trying to figure out a new mask. It's a good thing I had a few minutes to calm down during the drive because I didn't over react. I simply asked them what the hell they thought they were doing. The immediate response referenced the complaints over the last 2 nights and the fact that they all felt the nasal pillows didn't fit Eli properly. My retort included the fact that last night went very well. Why would we have any complaints from last night? I guess the same nurse had Eli for both nights and regardless of the fact that there were significantly fewer instances where they had to adjust the mask they felt it was appropriate to complain again this morning. I refuted the claim stating that Patricia was here all night and she said they only had to adjust the mask a handful of times. I also told them that we were not going to change masks. We had proven that this particular mask works to support Eli. We have been using it for 3+ weeks in the NICU and Eli's CO2 were stable in the 50 to 60 range on the mask regardless of the number of times they had to adjust it. Further, I said the mask fit just fine if they took the time to figure out how to use it.
Our goal at this point is to bring Eli home not spend another 3 or 4 weeks on the floor testing out every mask we can get our hands on to see if might happen to work better. I brought up the fact that we were once again messing around with Eli's respiratory care on the eve of a sleep study which caused us some issues during the last sleep study. With the last sleep study Eli was supposed to wear the nasal pillows for the study. Because they couldn't figure out how to use the pillows and because it was just too hard for them they opted to use a different mask for the sleep study. Of course this completely defeated the entire purpose of doing the sleep study but that's ok. Now we're messing around trying new masks and we have another sleep study coming up tomorrow night. I made it very clear that *if* we move forward with this sleep study we would be using the nasal pillows and we would find a way to make it work. There is no way we're going to do the sleep study if it's not going to give us some useful information. This will be Eli's 4th sleep study and 2 of the previous 3 sleep studies have yielded questionable data making us question why we're putting Eli through it and why we are asking our insurance company to pay for it.
By the time Patricia arrived I think they had received the message loud and clear. Somewhere in the conversation I had with them I asked if there was a handoff process between the NICU and the floor staff. They said yes of course there was. My response, "Well it doesn't sound like a lot of the pertinent information made it down here because it sure feels like we're reviewing a lot of decisions we made in the NICU."
Seattle Children's has changed me. I used to trust doctors and nurses and the care they recommend. Not anymore. I've seen the inner workings and this experience has taught me that medicine is more art than science. That might be hard to believe for some people because we have all these wonderful tests that give us lots of information. Tests are fine but the doctors who interpret the tests aren't using some formula that says 1 + 1 = 2. If a test comes back with this result it means X. Tests simply give them the information they need to make an educated guess. In the hospital setting you're hoping you get someone pretty damn smart with a lot of education and experience. We've been fortunate to have a couple of those doctors. The problem is they rotate out. When they leave you have another set of doctors who step in and they have their own interpretation of the data. Somehow the information and the facts you've worked hard to decipher with one doctor doesn't get passed on to the next doctor. That was the biggest shocker for me...communication is lacking! In the end you have a situation much like what we're experiencing with our move to the floor. Hey, let's try a different mask and a different BiPAP machine to see if we can get a different result. Thanks but no.
Fortunately the rest of the night goes without interference. Today just highlights for me why we need to get Eli out of the hospital now. If we don't get him out soon I'm convinced they will find a way to keep stringing us along. I think it's debatable whether they are doing this intentionally or with good intentions but in either case the net result is the same, Eli is sitting in the hospital for no valid reason while we repeat the same tests over and over again.
Tuesday, May 4, 2010
05/04/10 Rough Start
Last night was Eli's first night on the floor. I called this morning to see how things went and I got the nurse who was very vocal about telling me how they had to adjust Eli's mask 20+ times last night. She said the Respiratory Therapist was complaining to the supervisors and anyone he could get his hands on. What did they expect? Maybe they'll actually have to do some work for a few days while Eli is on their service.
This morning I spoke with Patricia and she told me today that Eli has two teeth that have broken through. She also told me that we could get Eli circumcised today if we wanted. Once of the urologists was available to do the procedure. They could do the plastibell procedure in one of the procedure rooms this afternoon. Grrrr! Remember last week when they told us they couldn't do the circumcision in a procedure room and they were trying to schedule an operating room? This is just one more instance where we found the hospital is working against us. Without wasting any more time we agree to have Eli circumcised today. If we don't get it done today I'm sure we'll have to wait another week to get the procedure done.
The circumcision goes well and Eli is basically out of action for the rest of the night. We'll see if tonight is any better in terms of managing his BiPAP mask.
This morning I spoke with Patricia and she told me today that Eli has two teeth that have broken through. She also told me that we could get Eli circumcised today if we wanted. Once of the urologists was available to do the procedure. They could do the plastibell procedure in one of the procedure rooms this afternoon. Grrrr! Remember last week when they told us they couldn't do the circumcision in a procedure room and they were trying to schedule an operating room? This is just one more instance where we found the hospital is working against us. Without wasting any more time we agree to have Eli circumcised today. If we don't get it done today I'm sure we'll have to wait another week to get the procedure done.
The circumcision goes well and Eli is basically out of action for the rest of the night. We'll see if tonight is any better in terms of managing his BiPAP mask.
Monday, May 3, 2010
05/03/10 The Big Move
Finally! We get to move down to the floor! Monday brings some good news. Eli is stable and doing better after his surgery and we're ready to head down to the floor. We'll be on the pulmonary service.
This is the first step toward home. We had some very specific conversations with the staff regarding the criteria for discharge. We want this to be crystal clear so there's no waffling when it comes to leaving the hospital. I think there's a tendency to say, "Let's wait another week". This tendency ends up keeping you in the hospital for weeks on end and the whole time you have no idea what you're waiting for. I'm bound and determined to avoid any more costly delays in getting Eli home. We've been sitting in the NICU for the last month watching and waiting to make sure Eli was stable. There's no reason we need to sit for another month on the floor. It's time to make the final push for home.
So far the hospital has been very non-committal in terms of telling us when we can bring Eli home but we've determined a few of the criteria. We need to show we can handle the home feeding pump for 24 hours. We did this once before when we thought we were going to be discharged at the end of February. There really isn't anything to it. You just hook up the pump and run it for a day. We also need to repeat the "car seat test" which means we have to sit Eli up in his car seat on regular oxygen for 30 minutes without any desaturations. Since Eli is going up to 12 hours on regular oxygen there shouldn't be any problems passing this test. We also need to make sure we can get the home equipment we need to support Eli. Patricia met with the home care people today and they assured us there wouldn't be a problem getting a home BiPAP machine. Finally, we talked with our pulmonologist and he would like to get one more sleep study using the nasal pillows. Last time we did a sleep study we were supposed to use the nasal pillows and they didn't so it was a complete waste of time and money. I think we need to question why we need yet one more sleep study and we need to have a clear understanding of what this test is going to tell us. If we end up moving forward with the sleep study we need to make sure it's done correctly using the right equipment.
That seems to be it in terms of the hurdles we need to get past. All of this assumes Eli continues to maintain his CO2 levels and doesn't have any other issues pop up. Now that we're on the floor it's time to push and get nasty about leaving if we have to. We would never do anything to compromise Eli's health or sacrifice his care but the level of care he is receiving right now from the hospital can be handled at home so there's no reason we need to keep living this nightmare.
This is the first step toward home. We had some very specific conversations with the staff regarding the criteria for discharge. We want this to be crystal clear so there's no waffling when it comes to leaving the hospital. I think there's a tendency to say, "Let's wait another week". This tendency ends up keeping you in the hospital for weeks on end and the whole time you have no idea what you're waiting for. I'm bound and determined to avoid any more costly delays in getting Eli home. We've been sitting in the NICU for the last month watching and waiting to make sure Eli was stable. There's no reason we need to sit for another month on the floor. It's time to make the final push for home.
So far the hospital has been very non-committal in terms of telling us when we can bring Eli home but we've determined a few of the criteria. We need to show we can handle the home feeding pump for 24 hours. We did this once before when we thought we were going to be discharged at the end of February. There really isn't anything to it. You just hook up the pump and run it for a day. We also need to repeat the "car seat test" which means we have to sit Eli up in his car seat on regular oxygen for 30 minutes without any desaturations. Since Eli is going up to 12 hours on regular oxygen there shouldn't be any problems passing this test. We also need to make sure we can get the home equipment we need to support Eli. Patricia met with the home care people today and they assured us there wouldn't be a problem getting a home BiPAP machine. Finally, we talked with our pulmonologist and he would like to get one more sleep study using the nasal pillows. Last time we did a sleep study we were supposed to use the nasal pillows and they didn't so it was a complete waste of time and money. I think we need to question why we need yet one more sleep study and we need to have a clear understanding of what this test is going to tell us. If we end up moving forward with the sleep study we need to make sure it's done correctly using the right equipment.
That seems to be it in terms of the hurdles we need to get past. All of this assumes Eli continues to maintain his CO2 levels and doesn't have any other issues pop up. Now that we're on the floor it's time to push and get nasty about leaving if we have to. We would never do anything to compromise Eli's health or sacrifice his care but the level of care he is receiving right now from the hospital can be handled at home so there's no reason we need to keep living this nightmare.
Sunday, May 2, 2010
05/02/10 Move Delayed
By Sunday Eli is back to a fairly normal routine. He is able to go on regular oxygen through the nasal cannula and he appears to be back to breathing on his own. Having the breathing tube down his throat has caused some issues though. His throat is scratchy and his vocal cords are swollen. These are normal side effects of the breathing tube and they will go away in a few days.
Eli is now on a little Tylenol for pain management. I think they had been giving him a low dose of morphine the last couple days which would probably explain why he wasn't waking up completely. Today he seems more like his normal self. When I got to the hospital this morning he was awake and he smiled at me when he heard my voice. Now that the stress and uncertainty of the past couple days is behind us we're glad we went forward with the surgery. We're still a little peeved that they couldn't get the circumcision done at the same time but you learn to deal with crap like that when you're dealing with the hospital.
Eli's CO2 level today is back up to 56 but he usually holds stead between 50 and 60 so we're not too worried about it. The rest of my day goes really well. I got a chance to sit and cuddle with Eli all day and by the evening I really felt like we were moving in the right direction.
Prior to the surgery we had talked about moving Eli down to the floor today but with the complications after surgery they decided to keep him in the NICU for another night. The plan is to move Eli down to the floor tomorrow. I'm not going to hold my breath but we're hopeful that we'll start the journey toward home soon.
Eli is now on a little Tylenol for pain management. I think they had been giving him a low dose of morphine the last couple days which would probably explain why he wasn't waking up completely. Today he seems more like his normal self. When I got to the hospital this morning he was awake and he smiled at me when he heard my voice. Now that the stress and uncertainty of the past couple days is behind us we're glad we went forward with the surgery. We're still a little peeved that they couldn't get the circumcision done at the same time but you learn to deal with crap like that when you're dealing with the hospital.
Eli's CO2 level today is back up to 56 but he usually holds stead between 50 and 60 so we're not too worried about it. The rest of my day goes really well. I got a chance to sit and cuddle with Eli all day and by the evening I really felt like we were moving in the right direction.
Prior to the surgery we had talked about moving Eli down to the floor today but with the complications after surgery they decided to keep him in the NICU for another night. The plan is to move Eli down to the floor tomorrow. I'm not going to hold my breath but we're hopeful that we'll start the journey toward home soon.
Saturday, May 1, 2010
05/01/10 Recovery Continues
This morning Patricia went down to the hospital early to spend time with Eli while I watch the boys. When she gets there Eli is still intubated and he is still on the ventilator. They are planning to extubate him around 9:00am but they want to get a blood gas first to see how his CO2 levels are on the ventilator.
By 9:00am they have the blood gas in hand and Eli's CO2 level is sitting at 41. Being on the ventilator over night has definitely helped to blow off some CO2 and gives us some good information for long term support. If we need to go down the route of getting the tracheostomy at some point we now know we can support Eli and keep his CO2 level in the "normal" range on a ventilator. Previously we had assumed this would be the case but now we have factual information that proves it.
Shortly after the blood gas is done they extubate Eli. He is still desaturating and adjusting to breathing on his own again so they put him on the BiPAP for the rest of the day. He'll need to be on the BiPAP all day and all night. Fortunately he is still recovering from the surgery and he is sleeping a lot but at least he is starting to breathe on his own.
One of the little zingers with this particular surgery has to do with not being able to feed Eli for 24 hours. In fact, they had to hold his feedings for a minimum of 6 hours prior to the surgery so I think he missed 3 feeds before he went into surgery yesterday. The surgery was completed around 2:30pm yesterday so Eli won't be able to eat anything until 2:30pm today. They are giving him fluids through an IV right now but he has been very unhappy with us for cutting off his food supply.
By 2:30pm he is definitely ready for some food. They give him a little Pedialyte to get things started and then they resume his regular feeds every 3 hours.
The rest of the day and evening go pretty well but he hasn't really had any good awake time yet. He'll be on the mask hooked to the BiPAP all day and night to make sure we can support his breathing. Hopefully tomorrow will bring a return to normalcy.
By 9:00am they have the blood gas in hand and Eli's CO2 level is sitting at 41. Being on the ventilator over night has definitely helped to blow off some CO2 and gives us some good information for long term support. If we need to go down the route of getting the tracheostomy at some point we now know we can support Eli and keep his CO2 level in the "normal" range on a ventilator. Previously we had assumed this would be the case but now we have factual information that proves it.
Shortly after the blood gas is done they extubate Eli. He is still desaturating and adjusting to breathing on his own again so they put him on the BiPAP for the rest of the day. He'll need to be on the BiPAP all day and all night. Fortunately he is still recovering from the surgery and he is sleeping a lot but at least he is starting to breathe on his own.
One of the little zingers with this particular surgery has to do with not being able to feed Eli for 24 hours. In fact, they had to hold his feedings for a minimum of 6 hours prior to the surgery so I think he missed 3 feeds before he went into surgery yesterday. The surgery was completed around 2:30pm yesterday so Eli won't be able to eat anything until 2:30pm today. They are giving him fluids through an IV right now but he has been very unhappy with us for cutting off his food supply.
By 2:30pm he is definitely ready for some food. They give him a little Pedialyte to get things started and then they resume his regular feeds every 3 hours.
The rest of the day and evening go pretty well but he hasn't really had any good awake time yet. He'll be on the mask hooked to the BiPAP all day and night to make sure we can support his breathing. Hopefully tomorrow will bring a return to normalcy.
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