It is now Sunday. Eli's CO2 level from last night was a 67. That is an improvement from the 72 he was at but not the kind of drop they were hoping for. They plan on testing Eli again late this afternoon or early evening. They think they are going to hold us over one more night to make sure the CO2 is dropping. They want it to be under 55 before they would be willing to discharge us and ideally they want it less than 50.
By the time evening rolls around we're getting a little anxious. As long as Eli's CO2 continues to drop and then remains steady in the less than 55 range we can eventually take him home. They just want to make sure Eli's CO2 levels are controlled and stable before they let us go so it might take a few more days.
Patricia is staying with Eli this evening and I'm at home with the boys. At 7:00pm I get a call from a very upset Patricia. They retested Eli's CO2 this evening and it was a 70. It's supposed to be dropping not increasing. The worst part is they are sending Eli back up to the NICU. A CO2 level of 70+ is life threatening and Eli needs to be put on a CPAP machine to help his respiration and gas exchange. Patricia really got her hopes up that we would be able to bring Eli home and this latest run of events has just about broken her spirit. She is afraid that Eli isn't going to make it out of the hospital.
Sunday, February 28, 2010
Saturday, February 27, 2010
02/27/10 Going Home?
We're supposed to be going home today but the blood work they did last night showed a CO2 level of 72. That is way too high. In fact anything over 70 is what they consider life threatening. They think the high CO2 might be a result of the high flow Eli was on. The sleep study was showing a disruption in Eli's breathing patterns so it might have been messing with his ability to exchange gases.
They plan to keep us in the hospital another night and they plan on testing the CO2 again later this evening and again on Sunday before discharge. Eli is now on the regular nasal cannula at 3/4 liter of oxygen.
They plan to keep us in the hospital another night and they plan on testing the CO2 again later this evening and again on Sunday before discharge. Eli is now on the regular nasal cannula at 3/4 liter of oxygen.
Friday, February 26, 2010
02/26/10 Care Conference
Today is a day for answers. We have our care conference today. We are hoping to walk away from today's meeting with some answers about Eli's sleep apnea, Eli's overall diagnosis, and a plan to bring Eli home.
Our meeting starts at 3:00pm. In attendance we have a representative from neurology, pulmonary, genetics, home care services, and occupational therapy. Additionally, the senior resident from the floor and the attending pediatrician from the floor are also in attendance. In total we have 7 medical professionals, Patricia, and me. It dawns on briefly how expensive this little conference is going to be. Kind of like watching your water meter spin when all the faucets are turned on in your house. Let's get this things started so we can turn off the water!
We start with an update from the sleep study. It went well but there isn't any fantastic news. Still no seizure activity but Eli is still having apnea. On the nasal cannula with regular oxygen Eli is having less episodes of apnea than before but we're talking 50 instead of 70. The pulmonologist explains that 50 is definitely better than 70 but it's still a lot more than 10. Basically Eli went from having severe apnea to having severe apnea. His number fluctuated a little but the underlying problem is still there. What we found to be surprising is Eli actually did better when he was on the regular oxygen and he did worse when he was on the high flow. They said something about the high flow disrupting Eli's breathing patterns. I'm not sure we fully understand what the sleep study is telling us and the doctors don't think it's all that meaningful. He still has the apnea and it's not going away for the time being. They are going to switch Eli back to regular oxygen and stop the high flow. We have been complaining that Eli is a little lethargic lately, mostly since starting the high flow, so we're happy the high flow is going to be stopped. The doctors think the disruption in Eli's breathing pattern has been taking some energy out of him and that's why he's sleepy all the time.
Now we get to the good part. They think Eli can go home on the regular nasal cannula with 3/4 liter of oxygen. This is fantastic news! Patricia and I are both excited but I'm still a little leery. There are a couple more tests they want to run on Eli before they can discharge him but assuming everything looks ok they'll discharge him on Saturday. The pulmonologist wants to make sure they test his CO2 level before we leave and he thinks we should get Eli a vaccination against RSV or Respiratory Syncytial Virus. It's near the end of the RSV season and Eli is already having breathing problems so they think the precaution is warranted. They warn that if Eli were to get RSV we would likely find ourselves back in the hospital in the NICU with a very sick baby. The shot is very expensive, like over $1,000, so they need to get clearance from the insurance company first but they don't think it will be an issue with Eli going home on oxygen.
Outside of the respiratory issues there's not much to talk about. We have several genetic tests outstanding but we should have the results back in the next week or two. We talk about going on the pulmonary service at the hospital so we can bring Eli back to the pulmonary clinics after we're discharged. Pulmonary will coordinate with genetics and the other specialties to get us the information and consultations we need. It sounds like we finally have a plan.
With that our meeting ends and we're off to pack up Eli's stuff so we can get ready to go home tomorrow.
Our meeting starts at 3:00pm. In attendance we have a representative from neurology, pulmonary, genetics, home care services, and occupational therapy. Additionally, the senior resident from the floor and the attending pediatrician from the floor are also in attendance. In total we have 7 medical professionals, Patricia, and me. It dawns on briefly how expensive this little conference is going to be. Kind of like watching your water meter spin when all the faucets are turned on in your house. Let's get this things started so we can turn off the water!
We start with an update from the sleep study. It went well but there isn't any fantastic news. Still no seizure activity but Eli is still having apnea. On the nasal cannula with regular oxygen Eli is having less episodes of apnea than before but we're talking 50 instead of 70. The pulmonologist explains that 50 is definitely better than 70 but it's still a lot more than 10. Basically Eli went from having severe apnea to having severe apnea. His number fluctuated a little but the underlying problem is still there. What we found to be surprising is Eli actually did better when he was on the regular oxygen and he did worse when he was on the high flow. They said something about the high flow disrupting Eli's breathing patterns. I'm not sure we fully understand what the sleep study is telling us and the doctors don't think it's all that meaningful. He still has the apnea and it's not going away for the time being. They are going to switch Eli back to regular oxygen and stop the high flow. We have been complaining that Eli is a little lethargic lately, mostly since starting the high flow, so we're happy the high flow is going to be stopped. The doctors think the disruption in Eli's breathing pattern has been taking some energy out of him and that's why he's sleepy all the time.
Now we get to the good part. They think Eli can go home on the regular nasal cannula with 3/4 liter of oxygen. This is fantastic news! Patricia and I are both excited but I'm still a little leery. There are a couple more tests they want to run on Eli before they can discharge him but assuming everything looks ok they'll discharge him on Saturday. The pulmonologist wants to make sure they test his CO2 level before we leave and he thinks we should get Eli a vaccination against RSV or Respiratory Syncytial Virus. It's near the end of the RSV season and Eli is already having breathing problems so they think the precaution is warranted. They warn that if Eli were to get RSV we would likely find ourselves back in the hospital in the NICU with a very sick baby. The shot is very expensive, like over $1,000, so they need to get clearance from the insurance company first but they don't think it will be an issue with Eli going home on oxygen.
Outside of the respiratory issues there's not much to talk about. We have several genetic tests outstanding but we should have the results back in the next week or two. We talk about going on the pulmonary service at the hospital so we can bring Eli back to the pulmonary clinics after we're discharged. Pulmonary will coordinate with genetics and the other specialties to get us the information and consultations we need. It sounds like we finally have a plan.
With that our meeting ends and we're off to pack up Eli's stuff so we can get ready to go home tomorrow.
Thursday, February 25, 2010
02/25/10 Sleep Study Two
No real changes to report today. They are scheduled to do the second sleep study tonight. We're looking forward to getting some more information on how Eli is progressing.
The technician arrives to set up for the sleep study around 7:00pm. As she is getting set up I kick up a conversation by asking her how long they are going to test Eli on the high flow. She looks over her notes and says the orders weren't written to include high flow. This is another one of those "huh?" moments for me. I sit back and think about it for a little bit then I decide I better say something so I ask why we wouldn't be testing him on high flow. I thought the whole point in doing a second sleep study was to see how well Eli was being supported by the high flow system. I can understand wanting to look at how Eli does off respiratory support for a while to get a baseline for comparison back to the previous sleep study. If Eli has fewer episodes this time vs. last time then perhaps he is getting better. The technician agrees to start him off on regular nasal cannula at 3/4 liter of O2 and then she will proceed to high flow for a while.
This week has been pretty frustrating but it's also given us some hope. The frustration has come into play because we can't seem to get any answers out of the doctors and we are dealing with 5 different specialists to coordinate Eli's care. Somehow the coordination has fallen on us. It's supposed to fall on the attending physician on the floor but that hasn't really happened. The one positive concession we've managed to get is called a "care conference" and it's set up tomorrow afternoon. A "care conference" is called an inter-departmental meeting in the business world. In medical terms, we're getting all the specialists and pediatricians responsible for Eli's care in one room, to answer our questions, and for the purpose of review Eli's care plan. We've asked several times for a roadmap to get home and we're determined to hammer out a plan during the meeting.
We'll have to wait for tomorrow to see how things turn out.
The technician arrives to set up for the sleep study around 7:00pm. As she is getting set up I kick up a conversation by asking her how long they are going to test Eli on the high flow. She looks over her notes and says the orders weren't written to include high flow. This is another one of those "huh?" moments for me. I sit back and think about it for a little bit then I decide I better say something so I ask why we wouldn't be testing him on high flow. I thought the whole point in doing a second sleep study was to see how well Eli was being supported by the high flow system. I can understand wanting to look at how Eli does off respiratory support for a while to get a baseline for comparison back to the previous sleep study. If Eli has fewer episodes this time vs. last time then perhaps he is getting better. The technician agrees to start him off on regular nasal cannula at 3/4 liter of O2 and then she will proceed to high flow for a while.
This week has been pretty frustrating but it's also given us some hope. The frustration has come into play because we can't seem to get any answers out of the doctors and we are dealing with 5 different specialists to coordinate Eli's care. Somehow the coordination has fallen on us. It's supposed to fall on the attending physician on the floor but that hasn't really happened. The one positive concession we've managed to get is called a "care conference" and it's set up tomorrow afternoon. A "care conference" is called an inter-departmental meeting in the business world. In medical terms, we're getting all the specialists and pediatricians responsible for Eli's care in one room, to answer our questions, and for the purpose of review Eli's care plan. We've asked several times for a roadmap to get home and we're determined to hammer out a plan during the meeting.
We'll have to wait for tomorrow to see how things turn out.
Wednesday, February 24, 2010
02/24/10 Hell Week Ends
We're supposed to repeat the sleep study tonight but Patricia tells me they have postponed it. Huh? Obviously my preaching about being proactive isn't sinking in. Regardless, we get some wonderful news today but like all good news you get it's tempered by the fact that most of the time you don't get any definitive answers.
Eli's copper test came back this morning and it came in at a 34. I don't know the relative scale but "normal" is 36. Eli is slightly low but not low enough to be a significant marker for Menke's. Patricia said they also brought in a Menke's specialist to look at Eli. After checking him out, the specialist doesn't think Eli has Menke's disease. He's 99% sure. We discuss it with some of the pediatricians on the floor and we come to the conclusion that Eli was potentially under nourished when they were drawing all the blood for his lab work. Copper levels and Ceruloplasmin levels are a function of nutrition in the body. Eli wasn't eating well to begin with which is what started this whole experience. On top of that they didn't feed Eli for the first 48 hours we were in the NICU in case he was having problems metabolizing the milk and formula. We have a plausible explanation for the lower copper and ceruloplasmin levels. Now that we think we know what's happening we ask if we can have the ceruloplasmin level retested. It's done at a lab right here in the hospital so the results come back in a few days instead of weeks later. While this is by no means a definitive negative result on a Menke's test we could at least feel a little better about where we're at if the result comes back normal.
We can forgive the sleep study delay at this point but we're still pushing to make sure we're actively looking for a cause of Eli's symptoms.
Eli's copper test came back this morning and it came in at a 34. I don't know the relative scale but "normal" is 36. Eli is slightly low but not low enough to be a significant marker for Menke's. Patricia said they also brought in a Menke's specialist to look at Eli. After checking him out, the specialist doesn't think Eli has Menke's disease. He's 99% sure. We discuss it with some of the pediatricians on the floor and we come to the conclusion that Eli was potentially under nourished when they were drawing all the blood for his lab work. Copper levels and Ceruloplasmin levels are a function of nutrition in the body. Eli wasn't eating well to begin with which is what started this whole experience. On top of that they didn't feed Eli for the first 48 hours we were in the NICU in case he was having problems metabolizing the milk and formula. We have a plausible explanation for the lower copper and ceruloplasmin levels. Now that we think we know what's happening we ask if we can have the ceruloplasmin level retested. It's done at a lab right here in the hospital so the results come back in a few days instead of weeks later. While this is by no means a definitive negative result on a Menke's test we could at least feel a little better about where we're at if the result comes back normal.
We can forgive the sleep study delay at this point but we're still pushing to make sure we're actively looking for a cause of Eli's symptoms.
Monday, February 22, 2010
02/22/10 Some Good News
Eli's Prader Willi test is back and the result is negative. Patricia and I are breathing a little easier tonight but we still have to worry about Menke's. Eli is gaining weight and he is getting used to the high flow nasal cannula but he's also sleeping a lot lately.
We're getting a little frustrated with the floor staff at this point too. We haven't seen anyone in a while and the attending hasn't stopped by lately. In fact they did Rounds on Eli this morning without Patricia. She was ticked. So much so that she laid into the doctors a little this afternoon. I think she got the point across. We're active parents and we want to be engaged in Eli's care.
In the evening one of the younger doctors comes in to speak with me while I'm hanging out with Eli. I don't think they want a repeat dose of "mean Patricia". He asks me if I have any questions. Well now that you mention it, yeah I have a few. He is less than helpful. I politely ask to talk to the attending and he runs out to give the guy a call.
When I get my chance to talk to the attending I ask a few questions but my driving point is this, I want a "road map" to Eli's care. Yeah it's a business thing but these doctors need to speak to us in terms we can understand. I want to know what the next steps are for Eli. If there are decisions to be made I want to know what the possible outcomes are going to be and where that leads us down the road. I want to know what tests and labs we have outstanding and when we are expecting them to come back so we can follow along and above all else, I want a road map showing us how we can bring our little boy home. I'm not sure if I'm getting my point across to the doctors but I'm going to keep hammering home the message until someone starts giving us the information we're looking for.
At the end of the day I haven't gotten very far. I guess the bus isn't going down the road tonight. About the only thing I get out of tonight's interactions with the staff is they're going to repeat the sleep study with Eli on the high flow to see how it's impacting his apnea. They are going to repeat the sleep study on Wednesday. I can wait a couple days but we better start thinking in proactive terms or I'll unleash "mean Patricia" on them again.
We're getting a little frustrated with the floor staff at this point too. We haven't seen anyone in a while and the attending hasn't stopped by lately. In fact they did Rounds on Eli this morning without Patricia. She was ticked. So much so that she laid into the doctors a little this afternoon. I think she got the point across. We're active parents and we want to be engaged in Eli's care.
In the evening one of the younger doctors comes in to speak with me while I'm hanging out with Eli. I don't think they want a repeat dose of "mean Patricia". He asks me if I have any questions. Well now that you mention it, yeah I have a few. He is less than helpful. I politely ask to talk to the attending and he runs out to give the guy a call.
When I get my chance to talk to the attending I ask a few questions but my driving point is this, I want a "road map" to Eli's care. Yeah it's a business thing but these doctors need to speak to us in terms we can understand. I want to know what the next steps are for Eli. If there are decisions to be made I want to know what the possible outcomes are going to be and where that leads us down the road. I want to know what tests and labs we have outstanding and when we are expecting them to come back so we can follow along and above all else, I want a road map showing us how we can bring our little boy home. I'm not sure if I'm getting my point across to the doctors but I'm going to keep hammering home the message until someone starts giving us the information we're looking for.
At the end of the day I haven't gotten very far. I guess the bus isn't going down the road tonight. About the only thing I get out of tonight's interactions with the staff is they're going to repeat the sleep study with Eli on the high flow to see how it's impacting his apnea. They are going to repeat the sleep study on Wednesday. I can wait a couple days but we better start thinking in proactive terms or I'll unleash "mean Patricia" on them again.
Saturday, February 20, 2010
02/20/10 Obie's Birthday
Obie turns two today and we're going to have a Curious George themed birthday party for him. We are going to have a few people over and Patricia and I are going to leave Eli at the hospital for a while. We can't stand the thought of leaving him alone in the NICU so our friend Jen volunteers to sit with Eli during the time we're at home.
Obie's birthday is an opportunity for us to get together with family and forgot about our worries for a little while. My sister Erin and her husband Quinn come over with baby Dillon. My Mom and Dad come over. We open presents and celebrate Obie's birthday. After presents we eat some cake then Daddy busts out the big surprise...Obie's new bike. Wow! Obie is so excited. About 30 seconds after giving him the bike he's sitting on it and he won't get off.
A couple hours later Patricia has to head back to the hospital and Obie is still sitting on his new bike. Everyone is leaving for the evening and I'm trying to convince Obie that the "Cookie Monster" isn't going to get his bike when we go to bed.
Patricia calls from the hospital and everything has gone just fine with Eli in the interim. In fact they are getting ready to move Eli back down to the floor now that he has been started on the high flow nasal cannula.
Thanks Jen you made our night.
Obie's birthday is an opportunity for us to get together with family and forgot about our worries for a little while. My sister Erin and her husband Quinn come over with baby Dillon. My Mom and Dad come over. We open presents and celebrate Obie's birthday. After presents we eat some cake then Daddy busts out the big surprise...Obie's new bike. Wow! Obie is so excited. About 30 seconds after giving him the bike he's sitting on it and he won't get off.
A couple hours later Patricia has to head back to the hospital and Obie is still sitting on his new bike. Everyone is leaving for the evening and I'm trying to convince Obie that the "Cookie Monster" isn't going to get his bike when we go to bed.
Patricia calls from the hospital and everything has gone just fine with Eli in the interim. In fact they are getting ready to move Eli back down to the floor now that he has been started on the high flow nasal cannula.
Thanks Jen you made our night.
Friday, February 19, 2010
02/19/10 More NICU
It's been a tough week and Friday couldn't have come at a better time. The results from the sleep study are back and as I arrive at the hospital from work one of the pulmonologists is starting to explain the findings.
When it comes to sleep studies there is an accepted "norm" for the number of apnea episodes a person can have "per hour". A normal person with no sleep apnea may have 1 or 2 pauses in their breathing every hour for a few seconds with no disruption of sleep. As the pulmonologist continued to explain, when the number of events increases from 1 or 2 and starts to approach upward of 10 per hour the collective medical community starts to get a little "excited" (the bad excited) about the result. Well, Eli had 150+ events with no respiratory support. On regular nasal cannula oxygen Eli had 70+ events an hour. Worse yet, Eli pauses and stops breathing in excess of 10 seconds for some of these events. The only good news to come out of the sleep study was they didn't find any evidence of seizure activity.
So what exactly does all this mean? Eli has what they call mixed sleep apnea. Mixed sleep apnea is a combination of central sleep apnea and obstructive sleep apnea. Central sleep apnea occurs when the brain isn't sending the right signals to the body telling it to breathe appropriately during sleep. Obstructive sleep apnea happens when there is an "obstruction" blocking the airway preventing you from breathing normally. In Eli's case they think the central part has to do with his general underlying neurological condition. The obstructive part is more than likely caused by his weak muscle tone (hypotonia) which makes it harder for the diaphragm to operate since it doesn't have a rigid chest wall to work against and the soft tissues in the throat are more likely to collapse and obstruct Eli's breathing.
The news is a little difficult to take given what we've already been through this week but at least we can take some action and start to address Eli's respiratory problems. The pulmonologist starts telling us about the treatment options. We are going to put Eli on a high flow nasal cannula that will blow air into his nose and help stimulate and possibly regulate his breathing. The positive pressure from the high flow is supposed to help with the obstructions by keeping the airway open and they're hoping the air blowing in his nose will act as a stimulus to remind him that he needs to keep breathing while he sleeps.
If this doesn't work the next step would be to do a tracheostomy and we'd have to put Eli on a ventilator. Now I don't know about you but I'm not too keen on someone cutting a hole in my kid's throat. Everything I've been reading on-line suggests that you want to avoid this at all cost. I've also been reading about some scary diseases where you put your child on a ventilator and they never get off it again. Needless to say this wasn't the best day. Patricia left for home and I stayed at the hospital to hang out with Eli for the night.
Later in the evening my buddy Paul came to visit me. We're going to hang out and play some cards then go grab some dinner. After the rough week I need a little break.
Now it's time for a little blurb about Paul. Most people don't know my friend Paul, and those who do probably don't know him as well as I do. We've been friends for 25+ years. Deep down (way deep down) he's a pretty sensitive guy so things got a little emotional when he first saw Eli and I told him what was going on. To put things in perspective, I still remember when he called me last year and told me his father had a stroke. I'm man enough to admit I cried a few tears that night and Paul just kept trying to convince me it would be ok. Normally I'm a firm believer in the "guys don't cry for nothing club" but every once in a while something sneaks up on me and catches me off guard. Paul and his family were basically a second family to me growing up. I still call his Dad "Pop". When he hit me with the news out of the blue I kind of lost it. We visited his Dad in the hospital not long after that and I didn't shed a tear. If I'm emotionally prepared for something I can usually handle it. The funny thing is I swear I saw some water works from Paul that night but it was raining a little so it was hard to tell. Fast forward to tonight and I swear the same thing happened when he saw Eli and I told him what was going on but it was inside and it wasn't raining. It turns out I'm blessed with amazing friends.
After we got through the hard stuff we ran out and grab a pizza from Pagliacci's and brought it back to the room. We were just sitting down to eat when the nurse comes in and tells me we're going to be moving back up to the NICU. Huh? I think I missed something because she just told me Eli needed to move back to the NICU...tonight.
It turns out that this high flow nasal cannula they are going to set Eli up on requires a stepped up level of care and support and by way of hospital protocol they couldn't start high flow oxygen on the floor. In a twisted way it made sense. If you're child requires high flow oxygen then they need "intensive care" by definition. Even though they have patients on the regular floor who are on high flow they can't start Eli on it so we have to pack up and move back to the NICU.
Paul had to leave at 8:00pm when visiting hours were over and I got busy pack up all the stuff we brought down to the floor with us. We had basically moved in! I called Patricia and asked her to come down to the hospital to help me figure out what was going on. She arrived at the hospital about an hour later. My Mom came over to watch the boys. We got settled into the NICU, got a sleeper room, and spend the rest of the evening trying to figure out why this was happening to us.
When it comes to sleep studies there is an accepted "norm" for the number of apnea episodes a person can have "per hour". A normal person with no sleep apnea may have 1 or 2 pauses in their breathing every hour for a few seconds with no disruption of sleep. As the pulmonologist continued to explain, when the number of events increases from 1 or 2 and starts to approach upward of 10 per hour the collective medical community starts to get a little "excited" (the bad excited) about the result. Well, Eli had 150+ events with no respiratory support. On regular nasal cannula oxygen Eli had 70+ events an hour. Worse yet, Eli pauses and stops breathing in excess of 10 seconds for some of these events. The only good news to come out of the sleep study was they didn't find any evidence of seizure activity.
So what exactly does all this mean? Eli has what they call mixed sleep apnea. Mixed sleep apnea is a combination of central sleep apnea and obstructive sleep apnea. Central sleep apnea occurs when the brain isn't sending the right signals to the body telling it to breathe appropriately during sleep. Obstructive sleep apnea happens when there is an "obstruction" blocking the airway preventing you from breathing normally. In Eli's case they think the central part has to do with his general underlying neurological condition. The obstructive part is more than likely caused by his weak muscle tone (hypotonia) which makes it harder for the diaphragm to operate since it doesn't have a rigid chest wall to work against and the soft tissues in the throat are more likely to collapse and obstruct Eli's breathing.
The news is a little difficult to take given what we've already been through this week but at least we can take some action and start to address Eli's respiratory problems. The pulmonologist starts telling us about the treatment options. We are going to put Eli on a high flow nasal cannula that will blow air into his nose and help stimulate and possibly regulate his breathing. The positive pressure from the high flow is supposed to help with the obstructions by keeping the airway open and they're hoping the air blowing in his nose will act as a stimulus to remind him that he needs to keep breathing while he sleeps.
If this doesn't work the next step would be to do a tracheostomy and we'd have to put Eli on a ventilator. Now I don't know about you but I'm not too keen on someone cutting a hole in my kid's throat. Everything I've been reading on-line suggests that you want to avoid this at all cost. I've also been reading about some scary diseases where you put your child on a ventilator and they never get off it again. Needless to say this wasn't the best day. Patricia left for home and I stayed at the hospital to hang out with Eli for the night.
Later in the evening my buddy Paul came to visit me. We're going to hang out and play some cards then go grab some dinner. After the rough week I need a little break.
Now it's time for a little blurb about Paul. Most people don't know my friend Paul, and those who do probably don't know him as well as I do. We've been friends for 25+ years. Deep down (way deep down) he's a pretty sensitive guy so things got a little emotional when he first saw Eli and I told him what was going on. To put things in perspective, I still remember when he called me last year and told me his father had a stroke. I'm man enough to admit I cried a few tears that night and Paul just kept trying to convince me it would be ok. Normally I'm a firm believer in the "guys don't cry for nothing club" but every once in a while something sneaks up on me and catches me off guard. Paul and his family were basically a second family to me growing up. I still call his Dad "Pop". When he hit me with the news out of the blue I kind of lost it. We visited his Dad in the hospital not long after that and I didn't shed a tear. If I'm emotionally prepared for something I can usually handle it. The funny thing is I swear I saw some water works from Paul that night but it was raining a little so it was hard to tell. Fast forward to tonight and I swear the same thing happened when he saw Eli and I told him what was going on but it was inside and it wasn't raining. It turns out I'm blessed with amazing friends.
After we got through the hard stuff we ran out and grab a pizza from Pagliacci's and brought it back to the room. We were just sitting down to eat when the nurse comes in and tells me we're going to be moving back up to the NICU. Huh? I think I missed something because she just told me Eli needed to move back to the NICU...tonight.
It turns out that this high flow nasal cannula they are going to set Eli up on requires a stepped up level of care and support and by way of hospital protocol they couldn't start high flow oxygen on the floor. In a twisted way it made sense. If you're child requires high flow oxygen then they need "intensive care" by definition. Even though they have patients on the regular floor who are on high flow they can't start Eli on it so we have to pack up and move back to the NICU.
Paul had to leave at 8:00pm when visiting hours were over and I got busy pack up all the stuff we brought down to the floor with us. We had basically moved in! I called Patricia and asked her to come down to the hospital to help me figure out what was going on. She arrived at the hospital about an hour later. My Mom came over to watch the boys. We got settled into the NICU, got a sleeper room, and spend the rest of the evening trying to figure out why this was happening to us.
Thursday, February 18, 2010
02/18/10 Sleep Study
We had a meeting with pulmonary on Tuesday. The doctor came down and examined Eli and after discussing it with Patricia we decided to move forward with a sleep study on Eli.
The sleep tech came in around 7:00pm and started to set up for the sleep study. They will monitor Eli for roughly 10 hours. It takes about an hour to get everything set up and I'm amazed at how many wires they have hooked to Eli. They use a wax like goo to "adhere" the wires to the head. Eli is looking like a porcupine now. I wish I had a camera to take a picture but I think we took it home. There is also a camera set above Eli to record the entire event. They use the recording to see if Eli is moving or squirming around when they record anything unusual.
The sleep technician is going to be in and out of the room all night adjusting the wires while she monitors the sleep study. I guess I'm not going to get a lot of sleep tonight. The nice thing about the sleep study is we'll have the results in the morning. The Olympics are on so I've been watching them most of the night. In between watching the Olympics I get up and check out the monitors. There are about 30 wavy lines on the computer screen monitoring Eli's sleep patterns and his breathing. I ask the technician if there's anything that will show seizure activity and she points to the top of the monitor but she says she doesn't know how to interpret the results adequately to tell me if Eli is having any seizure activity or not. I think I'll pack up the computer and spend the rest of the night watching the Olympics.
The sleep tech came in around 7:00pm and started to set up for the sleep study. They will monitor Eli for roughly 10 hours. It takes about an hour to get everything set up and I'm amazed at how many wires they have hooked to Eli. They use a wax like goo to "adhere" the wires to the head. Eli is looking like a porcupine now. I wish I had a camera to take a picture but I think we took it home. There is also a camera set above Eli to record the entire event. They use the recording to see if Eli is moving or squirming around when they record anything unusual.
The sleep technician is going to be in and out of the room all night adjusting the wires while she monitors the sleep study. I guess I'm not going to get a lot of sleep tonight. The nice thing about the sleep study is we'll have the results in the morning. The Olympics are on so I've been watching them most of the night. In between watching the Olympics I get up and check out the monitors. There are about 30 wavy lines on the computer screen monitoring Eli's sleep patterns and his breathing. I ask the technician if there's anything that will show seizure activity and she points to the top of the monitor but she says she doesn't know how to interpret the results adequately to tell me if Eli is having any seizure activity or not. I think I'll pack up the computer and spend the rest of the night watching the Olympics.
Wednesday, February 17, 2010
02/17/10 Begin Hell Week
Today we got a test back showing an abnormal result. Unfortunately it's one of the copper tests. Eli's Ceruloplasmin is off the charts low. The geneticist now thinks Eli might have Menke's disease. Menke's is a terminal disease.
Ceruloplasmin is officially known as ferroxidase or iron oxygen oxidoreductase. It is the major copper-carrying protein in the blood, and in addition plays a role in iron metabolism. Ceruloplasmin carries 90% of the copper in our plasma.
Any amount of reading on-line will tell you that copper disorders are particularly bad and Menke's is one of the worst. We're now facing the possibility that our son will die and all we can do is sit back and wait to see what Eli's actual copper test reveals.
I'm finding it hard to do anything now but stay with Eli. I've been trying to work as much as I can from the hospital and both Patricia and I have been trying to take care of Ian and Obie but we're having a rough time today. Both of us just want to hold Eli and take care of him. We are not prepared for "bad news" of this magnitude. This is truly one of the times in life when you simply have to put your faith in God that there's a plan for you and your child.
Patricia is more outwardly spiritual than I am. She is a practicing Catholic who does her best to attend church at every opportunity. She participates in a Bible Study Fellowship and leans on God a little more than I tend to. I've always believed in the teachings of the Bible and I consider myself Christian but I haven't always been a big believer in the organization of religion. Jesus preached to the masses in the streets, baptized people in the rivers, and performed miracles on the road. For me religion has always equated to quiet reflection and I'm a firm believer that if you have a keen eye and you look hard enough you can see the Holy Spirit at work in everyday life. Conscious thought and the embodiment of soul can't be defined by pure coincidence or evolution without a greater belief in a higher power. That sums up a little of what I believe but I won't go into a lot more detail.
Needless to say, times like these stress your faith and test your devotion to God. Patricia and I have had a few brief discussions on this topic over the last few days culminating today in our fear that our child might be taken from us. Why would God give us such a precious gift like Eli and then take him away in a short couple years? Could God be that cruel? There are a lot of things you could do at this point. I think it's safe to say we've been tempted to curse God and we've questioned our beliefs through this process but we're reminded of the story of Job from the Bible. If you're not familiar with the Book of Job go check it out. While it may be hard for us to accept whatever is in store for our little Eli we know that God has a plan. Even if we're not worthy of understanding that plan we both have faith that God will grant us the strength to endure and see us through this part of our life. After all, what else is there?
Ceruloplasmin is officially known as ferroxidase or iron oxygen oxidoreductase. It is the major copper-carrying protein in the blood, and in addition plays a role in iron metabolism. Ceruloplasmin carries 90% of the copper in our plasma.
Any amount of reading on-line will tell you that copper disorders are particularly bad and Menke's is one of the worst. We're now facing the possibility that our son will die and all we can do is sit back and wait to see what Eli's actual copper test reveals.
I'm finding it hard to do anything now but stay with Eli. I've been trying to work as much as I can from the hospital and both Patricia and I have been trying to take care of Ian and Obie but we're having a rough time today. Both of us just want to hold Eli and take care of him. We are not prepared for "bad news" of this magnitude. This is truly one of the times in life when you simply have to put your faith in God that there's a plan for you and your child.
Patricia is more outwardly spiritual than I am. She is a practicing Catholic who does her best to attend church at every opportunity. She participates in a Bible Study Fellowship and leans on God a little more than I tend to. I've always believed in the teachings of the Bible and I consider myself Christian but I haven't always been a big believer in the organization of religion. Jesus preached to the masses in the streets, baptized people in the rivers, and performed miracles on the road. For me religion has always equated to quiet reflection and I'm a firm believer that if you have a keen eye and you look hard enough you can see the Holy Spirit at work in everyday life. Conscious thought and the embodiment of soul can't be defined by pure coincidence or evolution without a greater belief in a higher power. That sums up a little of what I believe but I won't go into a lot more detail.
Needless to say, times like these stress your faith and test your devotion to God. Patricia and I have had a few brief discussions on this topic over the last few days culminating today in our fear that our child might be taken from us. Why would God give us such a precious gift like Eli and then take him away in a short couple years? Could God be that cruel? There are a lot of things you could do at this point. I think it's safe to say we've been tempted to curse God and we've questioned our beliefs through this process but we're reminded of the story of Job from the Bible. If you're not familiar with the Book of Job go check it out. While it may be hard for us to accept whatever is in store for our little Eli we know that God has a plan. Even if we're not worthy of understanding that plan we both have faith that God will grant us the strength to endure and see us through this part of our life. After all, what else is there?
Monday, February 15, 2010
02/15/10 Humor and Reality
The weekend went by without any problems. Nothing useful really happens over the weekends. Patricia stayed with Eli last night and called me this morning. She said Eli was handling his feeding really well and he was digesting all the milk they were giving him. I laughed and asked how she knew Eli was "digesting" all his food. She told me the nurse attaches a syringe to the end of Eli's feeding tube and basically sucks up any undigested food for measurement. This whole practice is pretty disgusting if you ask me. She then proceeded to tell me they put anything he hasn't digested back...
Eli's feeds are going well and he is starting to hold his body temperature now. His weight is up to about 8.5 lbs. or so. I think our lowest point was around 8.0 lbs. when we were admitted last Tuesday. It's hard to believe we've been in the hospital almost a week now. Our parent badges expire tomorrow so I'm going to have to look into getting a new one.
Later that afternoon we got a little dose of reality. One of the genetics doctors stopped by to visit with Patricia. He thinks it's probably Prader Willi given Eli's symptoms but we should know in a week or so when the test comes back. It was so nice of him to share his opinion being the expert that he is. Thanks for giving us something to dwell on for the next week. Remember when I mentioned something about good doctors being able to instill a sense of hope in you? It goes to reason that bad doctors are really good at taking the hope away. Consider our hope gone.
We are praying that Eli's Prader Willi test comes back negative and if it doesn't turn out that way they we are praying that God will give us the strength to deal with this disease and all it will mean for our family.
Eli's feeds are going well and he is starting to hold his body temperature now. His weight is up to about 8.5 lbs. or so. I think our lowest point was around 8.0 lbs. when we were admitted last Tuesday. It's hard to believe we've been in the hospital almost a week now. Our parent badges expire tomorrow so I'm going to have to look into getting a new one.
Later that afternoon we got a little dose of reality. One of the genetics doctors stopped by to visit with Patricia. He thinks it's probably Prader Willi given Eli's symptoms but we should know in a week or so when the test comes back. It was so nice of him to share his opinion being the expert that he is. Thanks for giving us something to dwell on for the next week. Remember when I mentioned something about good doctors being able to instill a sense of hope in you? It goes to reason that bad doctors are really good at taking the hope away. Consider our hope gone.
We are praying that Eli's Prader Willi test comes back negative and if it doesn't turn out that way they we are praying that God will give us the strength to deal with this disease and all it will mean for our family.
Friday, February 12, 2010
02/12/10 Friday's Results
After another night in the NICU nothing has really changed. This morning at Rounds we finally get a little good news. First, they reviewed the x-ray from Evergreen and it showed that Eli had a broken collar bone. The doctors at Evergreen just missed it. Second, the MRI results are back and everything looks normal. There was some concern because the CT scan showed some abnormalities but under the higher definition of the MRI everything appeared normal. Structurally Eli's brain is consistent with other 41/42 week old babies. Eli's underlying issue might be a metabolic disorder now instead of a purely neurological issue but they recommend we do an EEG (brain wave scan) to see if there are any issues with the brain's connectivity.
A technician comes in and hooks Eli up to a bunch of electrode and they proceed to monitor his brain wave activity for a few hours. After the test we get a visit from neurology with our first abnormal result coming from the EEG. Eli's brain waves are dysmature or slightly delayed. They described this as Eli's brain activity would more closely match that of a 36/37 week old infant not a 41/42 week old infant. We ask if this is what's causing some of Eli's problems but the jury is still out. It's just another test pointing us toward a diagnosis but we still don't have a definitive diagnosis yet. Now that we have an abnormal test the doctors are leaning more toward a neurological or genetic issue again. The good news is there was absolutely no sign of seizures or spike waves on the EEG.
I've been scouring the internet today trying to figure out what's going on with Eli. If you search under Hypotonic Infant you get a lot of results and most of them are related to some type of genetic disorder. One in particular seems to fit. Prader Willi syndrome has a lot of the symptoms we can attribute to Eli but there are some major pieces missing so we're not sure. I ask one of the doctors about Eli's undescended testicle and whether they have taken that into account as a symptom. The doctor's follow up was to ask me if I've been reading up on Prader Willi syndrome. I guess they've been thinking about it too. She confirmed that they have sent out a genetic test to rule out Prader Willi. In my research on-line I also ran into something called Menke's disease. Menke's is a particularly insidious disease because it's a progressively degenerative and ultimately terminal neurological disease. Menke's is also called kinky hair disease but Eli has this thick blanket of soft black hair covering this head. He almost needs a hair cut! Menke's is a copper disorder and without the ability to process and use copper correctly your body doesn't grown hair very well. What is does grow is usually grey and brittle and it breaks easily. It also has a distinctive appearance under a microscope. Given Eli's hair we don't think it's Menke's but we have some copper test outstanding still so the anxiety has spiked up a little. Sometimes doing research on the internet isn't a good idea...
About the same time the EEG results came in we were informed that we had some enzyme tests back that indicate Eli isn't missing any specific enzyme but not all of the tests are back yet. Regardless, the nutritionist thinks we can start feeding Eli through a feeding tube run through his nose into his belly. It's called an NG tube (nasogastric tube). I watched the nurse thread the tube down Eli's nose into his stomach and then she checked the placement of the tube by puffing a little air into the stomach while listening with a stethoscope. After that Eli was hooked up to a feeding pump and given some formula at 87 ml over an hour. It's been about 72 hours since Eli's last attempt at feeding and it feels good to know he's going to be getting some nourishment finally. While his weight has been stabilized through the IV fluids they've been giving him, this is the first step toward getting us transferred to the regular floor and then to home.
Eli is fairly stable all things considered and by the early evening they want to transfer us to the regular pediatric floor. Patricia is very nervous and upset about taking him out of the NICU. The level of care here in the NICU is unbelievable and we know we can always get help or get answers to our questions right away so we're a little reluctant to move into more of a shared services environment. By 8:00pm or so they pack us up and move us down to a shared room on the main floor of the hospital. The new room isn't too bad, at least there's a TV and the Olympics are going to be starting soon so that will come in handy for all the hours we're spending sitting around watching Eli sleep.
A technician comes in and hooks Eli up to a bunch of electrode and they proceed to monitor his brain wave activity for a few hours. After the test we get a visit from neurology with our first abnormal result coming from the EEG. Eli's brain waves are dysmature or slightly delayed. They described this as Eli's brain activity would more closely match that of a 36/37 week old infant not a 41/42 week old infant. We ask if this is what's causing some of Eli's problems but the jury is still out. It's just another test pointing us toward a diagnosis but we still don't have a definitive diagnosis yet. Now that we have an abnormal test the doctors are leaning more toward a neurological or genetic issue again. The good news is there was absolutely no sign of seizures or spike waves on the EEG.
I've been scouring the internet today trying to figure out what's going on with Eli. If you search under Hypotonic Infant you get a lot of results and most of them are related to some type of genetic disorder. One in particular seems to fit. Prader Willi syndrome has a lot of the symptoms we can attribute to Eli but there are some major pieces missing so we're not sure. I ask one of the doctors about Eli's undescended testicle and whether they have taken that into account as a symptom. The doctor's follow up was to ask me if I've been reading up on Prader Willi syndrome. I guess they've been thinking about it too. She confirmed that they have sent out a genetic test to rule out Prader Willi. In my research on-line I also ran into something called Menke's disease. Menke's is a particularly insidious disease because it's a progressively degenerative and ultimately terminal neurological disease. Menke's is also called kinky hair disease but Eli has this thick blanket of soft black hair covering this head. He almost needs a hair cut! Menke's is a copper disorder and without the ability to process and use copper correctly your body doesn't grown hair very well. What is does grow is usually grey and brittle and it breaks easily. It also has a distinctive appearance under a microscope. Given Eli's hair we don't think it's Menke's but we have some copper test outstanding still so the anxiety has spiked up a little. Sometimes doing research on the internet isn't a good idea...
About the same time the EEG results came in we were informed that we had some enzyme tests back that indicate Eli isn't missing any specific enzyme but not all of the tests are back yet. Regardless, the nutritionist thinks we can start feeding Eli through a feeding tube run through his nose into his belly. It's called an NG tube (nasogastric tube). I watched the nurse thread the tube down Eli's nose into his stomach and then she checked the placement of the tube by puffing a little air into the stomach while listening with a stethoscope. After that Eli was hooked up to a feeding pump and given some formula at 87 ml over an hour. It's been about 72 hours since Eli's last attempt at feeding and it feels good to know he's going to be getting some nourishment finally. While his weight has been stabilized through the IV fluids they've been giving him, this is the first step toward getting us transferred to the regular floor and then to home.
Eli is fairly stable all things considered and by the early evening they want to transfer us to the regular pediatric floor. Patricia is very nervous and upset about taking him out of the NICU. The level of care here in the NICU is unbelievable and we know we can always get help or get answers to our questions right away so we're a little reluctant to move into more of a shared services environment. By 8:00pm or so they pack us up and move us down to a shared room on the main floor of the hospital. The new room isn't too bad, at least there's a TV and the Olympics are going to be starting soon so that will come in handy for all the hours we're spending sitting around watching Eli sleep.
Thursday, February 11, 2010
02/11/10 Surprises and Suspicions
Today we get some results back but they come with a couple surprises. They tested for some type of flu virus and it came back negative so the medical staff doesn't have to wear masks anymore in the room. They're still waiting on one more test before they can lose the gowns though.
The surprises start at Rounds. The x-ray shows that Eli has a broken right clavicle but his heart and lungs look pretty good. We told the team that Eli had an x-ray at Evergreen shortly after he was born and they hadn't picked up on the broken collar bone. A broken collar bone is not that uncommon and is usually associated with normal birth trauma especially for a larger baby like Eli but we were surprised that it wasn't caught at Evergreen. We were also told that the CT scan of Eli's brain showed an abnormal or immature region and potentially some bleeding and they wanted to get a better picture by doing an MRI. They also wanted to do a full body scan (x-ray) to see if there was any additional birth trauma or damage to Eli. At this point they couldn't say with any certainty that the brain issue was causing the problems Eli was having but they were leaning toward more neurological causes now as the results for infection come rolling in negative.
Later in the evening we got a call from Dr. Shlafer, our Pediatrician, who has been following up with us on a very regular basis with calls to the hospital. He's been great that way and he has a knack for explaining some of the tests they're running in terms we can understand. Dr. Shlafer is pretty agitated that they are going to expose Eli to the radiation needed for a full body scan. He tells us the team here is looking into child abuse because of the broken collar bone and the results from the CT scan. He's been arguing with one of the doctors here but I suppose they have to cover their collective butts. We know the whole situation should probably bother us but we have nothing to hide and we're too distraught to be angry right now.
The surprises start at Rounds. The x-ray shows that Eli has a broken right clavicle but his heart and lungs look pretty good. We told the team that Eli had an x-ray at Evergreen shortly after he was born and they hadn't picked up on the broken collar bone. A broken collar bone is not that uncommon and is usually associated with normal birth trauma especially for a larger baby like Eli but we were surprised that it wasn't caught at Evergreen. We were also told that the CT scan of Eli's brain showed an abnormal or immature region and potentially some bleeding and they wanted to get a better picture by doing an MRI. They also wanted to do a full body scan (x-ray) to see if there was any additional birth trauma or damage to Eli. At this point they couldn't say with any certainty that the brain issue was causing the problems Eli was having but they were leaning toward more neurological causes now as the results for infection come rolling in negative.
Later in the evening we got a call from Dr. Shlafer, our Pediatrician, who has been following up with us on a very regular basis with calls to the hospital. He's been great that way and he has a knack for explaining some of the tests they're running in terms we can understand. Dr. Shlafer is pretty agitated that they are going to expose Eli to the radiation needed for a full body scan. He tells us the team here is looking into child abuse because of the broken collar bone and the results from the CT scan. He's been arguing with one of the doctors here but I suppose they have to cover their collective butts. We know the whole situation should probably bother us but we have nothing to hide and we're too distraught to be angry right now.
Wednesday, February 10, 2010
02/10/10 The Day After
After 24 hours in the NICU we've had news that some of the tests for infection have come back negative but there are still several pending.
We went to our first "Rounds" this morning. "Rounds" are basically when all the doctors get together to discuss each patient on the ward. Typically they happen in the morning between 9:00am and 11:00am. We had a chance to meet the NICU team which consists of several residents, a fellow, and an attending physician. Our schooling in medical vernacular has started.
Patricia and I make the decision today that one of us is going to have to go home to spend time with Ian and Obie while the other spends the night in the hospital. Our split shifts begin.
We went to our first "Rounds" this morning. "Rounds" are basically when all the doctors get together to discuss each patient on the ward. Typically they happen in the morning between 9:00am and 11:00am. We had a chance to meet the NICU team which consists of several residents, a fellow, and an attending physician. Our schooling in medical vernacular has started.
Patricia and I make the decision today that one of us is going to have to go home to spend time with Ian and Obie while the other spends the night in the hospital. Our split shifts begin.
Tuesday, February 9, 2010
02/09/10 A Very Bad Day
Today is supposed to be a good day. I was up way too late last night so Patricia suggested I stay home with the boys while she runs Eli over to the Pediatrician for a weight check. I spend my morning hanging out with the boys waiting for the good news when Patricia gets back.
Around 9:30am Patricia comes home. She is extremely distressed. In fact that might be a bit of an understatement. Eli lost weight again, another ounce and then some and Dr. Shlafer said we need to take Eli to Seattle Children's Hospital. Eli is lethargic and he shouldn't be losing weight at this point. I call my Mom and tell her the bad news and ask her to come over to watch the boys. We get our things packed up and we leave for Seattle Children's.
Seattle Children's is about the last place on Earth that I ever wanted to be. I can't think of a scarier place. I love my boys and I developed an affinity for other children that started the moment I became a father. To be in a place where children are hurting and suffering is my personal definition of hell. At the same time I know we're absolutely blessed to have one of the country's best children's hospitals in our back yard. The next part of our story is about the hardest thing Patricia and I have ever had to endure. We had about 4 people buzzing around Eli nonstop from the moment we were admitted to the ER and within an hour we were rushed up to the NICU. In the short time we were in the ER they noted that Eli was having up to 10 second pauses in his breathing and he was extremely hypotonic (weak muscle tone).
In the NICU they swarmed Eli with 4 or 5 nurses and 2 doctors doing a clinical evaluation. They started an IV, drew blood, did a spinal tap, and made their general assessments. We had almost no idea what was going on but obviously there was something seriously wrong with our little boy. I had to leave while they were drawing the spinal fluid and I made the mistake of calling my boss to let him know I wouldn't be in the office the rest of the week. Needless to say it wasn't a good time for us and as a parent you're virtually helpless as you sit and watch them poking and prodding your child.
After things settled down our nurse lead us through the admission process and took a general history from us. She also explained everything that was going on which helped to calm us down a little. We got a chance to speak with some of the doctors too. Eli was presenting with Hypotonia (weak muscle tone), pauses in breathing (apnea), and he was a little dehydrated. His body temperature was also a little lower than normal. The doctors explained that they thought Eli might have an infection, either viral or bacterial, and they were going to start him on anti-biotics and anti-viral medications. The rule of thumb with an infection is hit it hard and fast and the sooner the better. They said we would know in a few days if any of the blood cultures came back positive and we could better tailor his care toward whatever he had. They took blood, urine, and spinal fluid for testing but most of the tests would take a couple days to come back. Until then they had to place us in quarantine which didn't have a big impact on us as parents but it meant that every time a nurse or doctor came into our room they had to gown up and wear a mask. They moved Eli into a single room in the NICU where we sat with him for the next couple hours trying to piece together everything that had happened today.
The timeline is a little jumbled at this point because we started to get some new things thrown at us and the shock hadn't quite worn off. They got us set up with a breast pump so Patricia could pump milk for the baby. We got a pager in case we were away from the room and they wanted to get in touch with us. There isn't a place to sleep in the NICU so they got us set up with a "sleeper room" which consists of a room big enough to hold a single bed, and we got a map of the hospital, which it turns out is actually pretty big. From there we had to wander out to the front desk to get security passes that allow us to be with Eli 24 hours a day. We also called family and friends to give them an update on what was happening.
Later that evening we got a visit from Dr. Ali Dickson, one of the residents doing her rotation in the NICU. I only mention this because Dr. Dickson really helped us through a tough time and she did it with the level of care and human compassion that we later learned can be somewhat lacking in a hospital dedicated to treating children. Don't get me wrong, all of the doctors at Seattle Children's are fantastic. I wouldn't want Eli to be treated anywhere else, but I think doctors can become a little too clinical after a while and they forget that they aren't just treating symptoms. In our case, the patient is our son and he's the embodiment of our hopes and dreams. We soon realized that the good doctors are the ones that take the time to work with you and give you hope as parents that your dreams might still be realized for your child.
Dr. Dickson got down on our level and started by asking how we were doing. She explained in simple terms what was happening and what they were looking for and she laid out a very basic plan for us. In terms of Eli's care they were looking for an infection and if it wasn't an infection then they would run some more tests. They were giving Eli fluids through the IV to get him hydrated and they had him hooked up with monitors tracking his heart rate, respiratory rate, and blood oxygen saturation. She let us know that we would be in the NICU for a few days while they ran some tests but she let us know the goal was to get Eli better so we could take him home with us. She also said they were going to do a CT scan of Eli's head and a chest x-ray to look for other issues while they waited on the blood cultures.
Sometime during the evening Patricia drove home to get sleeping bags and a change of clothes for us. I honestly have no idea where she got the strength to leave the hospital and Eli behind for even the short time it took to drive home and back. I certainly couldn't have done it. She is a much stronger person that me emotionally and spiritually and I couldn't have asked for a better mother for my children.
I don't remember what time it was when the emotional exhaustion forced us up to the sleeper room but we quickly came to the realization that 2 adults couldn't share a single bed and get any meaningful sleep. I think we settled for about 2 hours of rest before we "woke" up the next morning to face the day.
Around 9:30am Patricia comes home. She is extremely distressed. In fact that might be a bit of an understatement. Eli lost weight again, another ounce and then some and Dr. Shlafer said we need to take Eli to Seattle Children's Hospital. Eli is lethargic and he shouldn't be losing weight at this point. I call my Mom and tell her the bad news and ask her to come over to watch the boys. We get our things packed up and we leave for Seattle Children's.
Seattle Children's is about the last place on Earth that I ever wanted to be. I can't think of a scarier place. I love my boys and I developed an affinity for other children that started the moment I became a father. To be in a place where children are hurting and suffering is my personal definition of hell. At the same time I know we're absolutely blessed to have one of the country's best children's hospitals in our back yard. The next part of our story is about the hardest thing Patricia and I have ever had to endure. We had about 4 people buzzing around Eli nonstop from the moment we were admitted to the ER and within an hour we were rushed up to the NICU. In the short time we were in the ER they noted that Eli was having up to 10 second pauses in his breathing and he was extremely hypotonic (weak muscle tone).
In the NICU they swarmed Eli with 4 or 5 nurses and 2 doctors doing a clinical evaluation. They started an IV, drew blood, did a spinal tap, and made their general assessments. We had almost no idea what was going on but obviously there was something seriously wrong with our little boy. I had to leave while they were drawing the spinal fluid and I made the mistake of calling my boss to let him know I wouldn't be in the office the rest of the week. Needless to say it wasn't a good time for us and as a parent you're virtually helpless as you sit and watch them poking and prodding your child.
After things settled down our nurse lead us through the admission process and took a general history from us. She also explained everything that was going on which helped to calm us down a little. We got a chance to speak with some of the doctors too. Eli was presenting with Hypotonia (weak muscle tone), pauses in breathing (apnea), and he was a little dehydrated. His body temperature was also a little lower than normal. The doctors explained that they thought Eli might have an infection, either viral or bacterial, and they were going to start him on anti-biotics and anti-viral medications. The rule of thumb with an infection is hit it hard and fast and the sooner the better. They said we would know in a few days if any of the blood cultures came back positive and we could better tailor his care toward whatever he had. They took blood, urine, and spinal fluid for testing but most of the tests would take a couple days to come back. Until then they had to place us in quarantine which didn't have a big impact on us as parents but it meant that every time a nurse or doctor came into our room they had to gown up and wear a mask. They moved Eli into a single room in the NICU where we sat with him for the next couple hours trying to piece together everything that had happened today.
The timeline is a little jumbled at this point because we started to get some new things thrown at us and the shock hadn't quite worn off. They got us set up with a breast pump so Patricia could pump milk for the baby. We got a pager in case we were away from the room and they wanted to get in touch with us. There isn't a place to sleep in the NICU so they got us set up with a "sleeper room" which consists of a room big enough to hold a single bed, and we got a map of the hospital, which it turns out is actually pretty big. From there we had to wander out to the front desk to get security passes that allow us to be with Eli 24 hours a day. We also called family and friends to give them an update on what was happening.
Later that evening we got a visit from Dr. Ali Dickson, one of the residents doing her rotation in the NICU. I only mention this because Dr. Dickson really helped us through a tough time and she did it with the level of care and human compassion that we later learned can be somewhat lacking in a hospital dedicated to treating children. Don't get me wrong, all of the doctors at Seattle Children's are fantastic. I wouldn't want Eli to be treated anywhere else, but I think doctors can become a little too clinical after a while and they forget that they aren't just treating symptoms. In our case, the patient is our son and he's the embodiment of our hopes and dreams. We soon realized that the good doctors are the ones that take the time to work with you and give you hope as parents that your dreams might still be realized for your child.
Dr. Dickson got down on our level and started by asking how we were doing. She explained in simple terms what was happening and what they were looking for and she laid out a very basic plan for us. In terms of Eli's care they were looking for an infection and if it wasn't an infection then they would run some more tests. They were giving Eli fluids through the IV to get him hydrated and they had him hooked up with monitors tracking his heart rate, respiratory rate, and blood oxygen saturation. She let us know that we would be in the NICU for a few days while they ran some tests but she let us know the goal was to get Eli better so we could take him home with us. She also said they were going to do a CT scan of Eli's head and a chest x-ray to look for other issues while they waited on the blood cultures.
Sometime during the evening Patricia drove home to get sleeping bags and a change of clothes for us. I honestly have no idea where she got the strength to leave the hospital and Eli behind for even the short time it took to drive home and back. I certainly couldn't have done it. She is a much stronger person that me emotionally and spiritually and I couldn't have asked for a better mother for my children.
I don't remember what time it was when the emotional exhaustion forced us up to the sleeper room but we quickly came to the realization that 2 adults couldn't share a single bed and get any meaningful sleep. I think we settled for about 2 hours of rest before we "woke" up the next morning to face the day.
Monday, February 8, 2010
02/08/10 Monday Weight Check
Monday morning we get up and take Eli back to the Pediatrician's office for another weight check. We had an uneventful Sunday, kicking back to watch the Superbowl, and hang out with neighbors. Eli seems to be eating a little better but we're still a little concerned because he still hasn't perked up yet like we expected.
At the Pediatrician's we find out that Eli has lost about 2 tenths of an ounce. Not really good but also not really all that bad either. Dr. Shlafer explains to us that all kids are different and some just rebound later. He describes it as a bell curve with kids rebounding on the 4th day through the 6th day. Eli is probably just a late bloomer and his weight is pretty static so we're hoping we've reached the end of the weight loss rollercoaster. Dr. Shlafer asks us to bring Eli back on Tuesday for another weight check before the clinic opens.
Today is also day 6 of accounting close for work so I've got some responsibilities to take care of at the office. After our appointment I head down to MRG to get to work. We're working on January close and there have been a ton of changes for 2010 so there's a lot of stuff to update. I'm expecting a long day. We wrap up our preliminary close process around 10:30pm and I head home feeling like I accomplished something for the day.
When I get home Patricia tells me Eli had a great feeding earlier in the day which is a big relief. We're feeling a little better and we're hopeful his weight will increase at tomorrow's weight check.
At the Pediatrician's we find out that Eli has lost about 2 tenths of an ounce. Not really good but also not really all that bad either. Dr. Shlafer explains to us that all kids are different and some just rebound later. He describes it as a bell curve with kids rebounding on the 4th day through the 6th day. Eli is probably just a late bloomer and his weight is pretty static so we're hoping we've reached the end of the weight loss rollercoaster. Dr. Shlafer asks us to bring Eli back on Tuesday for another weight check before the clinic opens.
Today is also day 6 of accounting close for work so I've got some responsibilities to take care of at the office. After our appointment I head down to MRG to get to work. We're working on January close and there have been a ton of changes for 2010 so there's a lot of stuff to update. I'm expecting a long day. We wrap up our preliminary close process around 10:30pm and I head home feeling like I accomplished something for the day.
When I get home Patricia tells me Eli had a great feeding earlier in the day which is a big relief. We're feeling a little better and we're hopeful his weight will increase at tomorrow's weight check.
Saturday, February 6, 2010
02/06/10 Lactation Day Two
It's Saturday morning. My Mom comes over to watch the boys and we're headed back to Evergreen to see if Eli is still losing weight. We are starting to get concerned at this point. He is way to lethargic and he isn't feeding like he should be.
The net result of our second visit to the Lactation Clinic is Eli has lost more weight and our Pediatrician wants to see Eli this morning as soon as possible. We head straight from Evergreen to Mill Creek to visit our Pediatrician, Dr. Stephen Shlafer, MD. The boys have been going to Dr. Shlafer since we moved back to Washington in 2007. He's absolutely fantastic with kids. We see Dr. Shlafer and he tells us not to worry. All kids lose weight from their birth weight and some are just slower to rebound. Eli is pink with little to no jaundice and Dr. Shlafer says his heart and lungs sound great. Dr. Shlafer tells us to bring Eli back on Monday for a weight check before the clinic opens. We head home somewhat reassured but still a little worried.
The net result of our second visit to the Lactation Clinic is Eli has lost more weight and our Pediatrician wants to see Eli this morning as soon as possible. We head straight from Evergreen to Mill Creek to visit our Pediatrician, Dr. Stephen Shlafer, MD. The boys have been going to Dr. Shlafer since we moved back to Washington in 2007. He's absolutely fantastic with kids. We see Dr. Shlafer and he tells us not to worry. All kids lose weight from their birth weight and some are just slower to rebound. Eli is pink with little to no jaundice and Dr. Shlafer says his heart and lungs sound great. Dr. Shlafer tells us to bring Eli back on Monday for a weight check before the clinic opens. We head home somewhat reassured but still a little worried.
Friday, February 5, 2010
02/05/10 Lactation Day One
It's Friday and we bring Eli in to the Lactation clinic at Evergreen in the morning. They weighed him and he is still losing weight. We talked about Eli's suck and swallow response and how the feedings are going but nothing really new comes out of the meeting. They want us to come back tomorrow (Saturday morning) for another weight check.
Thursday, February 4, 2010
02/04/10 Going Home
Thursday rolls around. We spend an extra night at Evergreen Hospital to make sure everything is going well with Eli. They have been measuring bilirubin and blood sugars nonstop for the last 72 hours. Eli's little heels look like they were involved in a "slasher" attack. The chest x-ray they took the other day was clear and his heart and lungs looked good.
Today we get to bring Eli home. I bring Ian and Obie down to meet their little brother and they are thrilled. Ian is taking things in stride; he's been through this drill before. Obie loves his new little brother until we ask, "Should we bring Eli home with us?" upon which Obie's answer is a very emphatic, "No!" Little Obie is going to have some adjusting to do!
Eli is still having feeding difficulties but Patricia is working on it. Eli just isn't interested in feeding and he's been very lethargic over the last few days. We're still a little worried but we're happy to be bringing him home where we can care for him with the family around.
We set up an appointment to bring Eli in to the lactation clinic at Evergreen tomorrow.
Note: Added some pictures. Enjoy!
Today we get to bring Eli home. I bring Ian and Obie down to meet their little brother and they are thrilled. Ian is taking things in stride; he's been through this drill before. Obie loves his new little brother until we ask, "Should we bring Eli home with us?" upon which Obie's answer is a very emphatic, "No!" Little Obie is going to have some adjusting to do!
Eli is still having feeding difficulties but Patricia is working on it. Eli just isn't interested in feeding and he's been very lethargic over the last few days. We're still a little worried but we're happy to be bringing him home where we can care for him with the family around.
We set up an appointment to bring Eli in to the lactation clinic at Evergreen tomorrow.
Note: Added some pictures. Enjoy!
Wednesday, February 3, 2010
02/03/10 Pediatric Evaluation
One of the hospital pediatricians stopped by to evaluate Eli this morning. This is a fairly standard procedure and one we've been looking forward to given the issues we had yesterday.
The pediatrician does a pretty thorough evaluation. She notes Eli is a little floppy and he has one undescended testicle. He has some small pauses in his breathing but everything else checks out ok. They want to keep us in the hospital one more night to make sure Eli's breathing improves and to make sure he starts feeding.
The pediatrician does a pretty thorough evaluation. She notes Eli is a little floppy and he has one undescended testicle. He has some small pauses in his breathing but everything else checks out ok. They want to keep us in the hospital one more night to make sure Eli's breathing improves and to make sure he starts feeding.
Tuesday, February 2, 2010
02/02/10 Eli is Born!
Our Tuesday started off a little early. After 41 weeks of waiting it's time to induce. We woke up and made our way to Evergreen Hospital. We arrived just after 5:00am and were admitted to one of the birthing rooms. Patricia was set up with an IV and things started to move pretty quickly after that. At 1:01pm our son, Eli Zachary McCormick, makes his way into the world. He is 9 lbs. 8 oz. and comes in at 22.25 inches long. He doesn't cry right after delivery which is a little worrisome but the nurses take good care of him.
Eli is given an initial apgar score of 9. After a little observation the nurses are concerned because he is working a little too hard to breath. They call down a NICU nurse who administers some O2 and tries to get Eli breathing steadily. Sometimes newborns have a hard time adapting to breathing air so we're not overly worried. His apgar is downgraded to a 7. Finally, after everything has settled down and his breathing becomes a little more regular they give him a final apgar score of 8.
Our nurse is still a little worried about Eli's breathing and the breast feeding hasn't been a big success. They decide to get a chest x-ray to see if the lungs and heart look ok and they test Eli's blood sugars and bilirubin every once in a while by pricking his heels. a few hours later Eli's blood sugar is a little low which starts to cause some more alarm. We ask to have one of the NICU nurses come back to look at him. They decide to take Eli up to the NICU for observation. They give Eli some formula in a bottle and he immediately gulps down an ounce before settling in for a little nap with Dad looking on. After a short scare and four hours of observation they let us go back to the birthing room where we settle in to enjoy our new baby boy.
Eli is given an initial apgar score of 9. After a little observation the nurses are concerned because he is working a little too hard to breath. They call down a NICU nurse who administers some O2 and tries to get Eli breathing steadily. Sometimes newborns have a hard time adapting to breathing air so we're not overly worried. His apgar is downgraded to a 7. Finally, after everything has settled down and his breathing becomes a little more regular they give him a final apgar score of 8.
Our nurse is still a little worried about Eli's breathing and the breast feeding hasn't been a big success. They decide to get a chest x-ray to see if the lungs and heart look ok and they test Eli's blood sugars and bilirubin every once in a while by pricking his heels. a few hours later Eli's blood sugar is a little low which starts to cause some more alarm. We ask to have one of the NICU nurses come back to look at him. They decide to take Eli up to the NICU for observation. They give Eli some formula in a bottle and he immediately gulps down an ounce before settling in for a little nap with Dad looking on. After a short scare and four hours of observation they let us go back to the birthing room where we settle in to enjoy our new baby boy.
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