Written by a parent (me) of a child with special needs
When you work in a hospital please be aware that you may be the only face that we see; you can brighten our day with a simplest gesture or smile; or you can darken our already frustrating day.
When you work in a hospital please don’t forget these are our children lying helpless and sick, we must be their voices and strength, but we are still human not super heroes.
When you work in a Hospital please understand that every word you say is magnified; when you say 10 minutes please recognize that to you 10 minutes and 25 might be the same, but to someone who’s watching and waiting for answers that extra 15 minutes can feel like an hour.
When you work in a hospital please remember that this may be your job, but this is our life. We don’t get weekends, holidays or vacations; we are on the clock 24/7.
When you work in a hospital you may be an expert in your field, but please remember that we’re the experts when it comes to our children, you may have years of schooling behind you but we have hours and hours of on the job training.
When you work in a hospital please don’t forget, we’re not here by choice; if it was up to us we would have stayed home, but we know we can’t do it alone. We’ve brought them here so with your help our children may be healed.
So this poem might give you some idea of the day I've had, long and frustrating. Noel's feeding issues didn't get any better today. She was pretty out of it all day, she slept most of the day. The GI Doc's finally came to see us (only 24 hours after they were first called) only to bring bad news. They don't have any answers either as to why Noel is having such a hard time tolerating feeds. Another abdominal x-ray was done to see the position of her j-tube and it's still in the right place. So the plan is to start giving her pedilite through her j-tube at 5ml per hour and see how she handles it, if she does good then we will increase it slowly. The best case scenario would be: she would tolerate the pedilite and then we could slowly mix in her formula. Once we start increasing the formula we might have to increase by only 1ml per 12 hours. So for those of you wondering how long that will take, you need to multiple 60ml (the total amount of fluid she requires per hour) by 12. And that's the best case scenario. Worst case scenario involves surgery along with other things.
Noel is scheduled to get a PIC line in the morning, because she'll need to be on TPN (IV nutrition) for an extended amount of time she needs to have better access. I'll let you know how tomorrow goes.
Tina
Thursday, February 26, 2009
Wednesday, February 25, 2009
One step forward, Two steps back
If at first you don’t succeed try, try again.
We have been trying things and so far are progress is very slow, slower than we had hoped. As I said before since we are now feeding Noel’s intestines we have to start out slow. If you feed the gut to fast a condition called “gastric dumping syndrome” can occur; this happens when you introduce food to fast into the gut and it can not keep up so it gets ride of all of the food (diarrhea) and none of the nutrients are absorbed. So we have been giving Noel her food at a rate of 10ml (which means she gets 10ml of food an hour; an ounce is 30ml just to give you an idea of how little that is.) The plan was to increase her rate by 5ml every 12 hours. She was doing fairly well at 10 and 15 but when the rate was turned up to 20ml/hour was when she started to have more retching and more bile drain from her stomach. Also, we gave her medicine into her stomach at 10am and it was still coming back out unabsorbed at 2:30pm.
So now we turned her feed back down to 10ml/hour, we might have to increase by only 1ml every 12 hours. Since her problems started so late in the day, we probably won’t hear form her GI Doctors until the morning to see what they want to do. Until then she is still receiving her main nutrition through TPN and Lipids, which is nutrition through her IV. This is so frustrating; I really don’t know what else we can do. I hope we can try something that will work. Thanks for checking on her and thanks for your thoughts and prayers!
Tina
We have been trying things and so far are progress is very slow, slower than we had hoped. As I said before since we are now feeding Noel’s intestines we have to start out slow. If you feed the gut to fast a condition called “gastric dumping syndrome” can occur; this happens when you introduce food to fast into the gut and it can not keep up so it gets ride of all of the food (diarrhea) and none of the nutrients are absorbed. So we have been giving Noel her food at a rate of 10ml (which means she gets 10ml of food an hour; an ounce is 30ml just to give you an idea of how little that is.) The plan was to increase her rate by 5ml every 12 hours. She was doing fairly well at 10 and 15 but when the rate was turned up to 20ml/hour was when she started to have more retching and more bile drain from her stomach. Also, we gave her medicine into her stomach at 10am and it was still coming back out unabsorbed at 2:30pm.
So now we turned her feed back down to 10ml/hour, we might have to increase by only 1ml every 12 hours. Since her problems started so late in the day, we probably won’t hear form her GI Doctors until the morning to see what they want to do. Until then she is still receiving her main nutrition through TPN and Lipids, which is nutrition through her IV. This is so frustrating; I really don’t know what else we can do. I hope we can try something that will work. Thanks for checking on her and thanks for your thoughts and prayers!
Tina
Monday, February 23, 2009
Hospital Update
There wasn’t much to update over the weekend, sadly weekends in the hospital are very long, slow and not much gets done. We tried feeding Noel in small amounts over the weekend but she didn’t tolerate even the small amounts.
Today was a busy day, Noel got another abdominal x-ray this morning which showed that she still has barium in her colon from a swallow study last Tuesday; this isn’t normal for the barium to still be there so we can assume that she has slow moving bowels. We then discussed “the plan” with the Doctors which was: start Noel on TPN (IV nutrition), try cleaning out her bowels and try slowing down her feed rate. But in the middle of the day after another consult from GI the plan changed to placing a GJ-Tube. The overall consensus is that Noel does have a motility problem which means that her stomach is slow at getting her food down into her intestines. She was then taken to Interventional Radiology to place the GJ-tube. The doctor had a difficult time placing the j-tube because Noel’s intestines looped around so much (also could be part of the feeding problems). So as I write tonight she has her GJ tube and they are now starting her IV nutrition until she is able to take her full feed into her new tube.
The bad news is that she has lost weight since we’ve been here; she now weighs the same that she did when we left the hospital 9 months ago; I really hope this tube will help her gain weight. She is also growing some bacteria in her trach (not a big surprise) so she is on antibiotics to help keep it under control.
So for now that’s where things are, I’m hoping that Noel will tolerate her GJ-tube feeds and that we can get her feeding rate up to where it needs to be so we can go home soon. Thanks for checking in on us!
Tina
Today was a busy day, Noel got another abdominal x-ray this morning which showed that she still has barium in her colon from a swallow study last Tuesday; this isn’t normal for the barium to still be there so we can assume that she has slow moving bowels. We then discussed “the plan” with the Doctors which was: start Noel on TPN (IV nutrition), try cleaning out her bowels and try slowing down her feed rate. But in the middle of the day after another consult from GI the plan changed to placing a GJ-Tube. The overall consensus is that Noel does have a motility problem which means that her stomach is slow at getting her food down into her intestines. She was then taken to Interventional Radiology to place the GJ-tube. The doctor had a difficult time placing the j-tube because Noel’s intestines looped around so much (also could be part of the feeding problems). So as I write tonight she has her GJ tube and they are now starting her IV nutrition until she is able to take her full feed into her new tube.
The bad news is that she has lost weight since we’ve been here; she now weighs the same that she did when we left the hospital 9 months ago; I really hope this tube will help her gain weight. She is also growing some bacteria in her trach (not a big surprise) so she is on antibiotics to help keep it under control.
So for now that’s where things are, I’m hoping that Noel will tolerate her GJ-tube feeds and that we can get her feeding rate up to where it needs to be so we can go home soon. Thanks for checking in on us!
Tina
Friday, February 20, 2009
Back in the Hospital
Well we’re back at The Children’s Hospital, surprisingly 947 looks just like 846. Unfortunately Noel’s tummy is the reason we’re here in the height of Respiratory Season. Please pray that she doesn’t catch a bug while we’re here. Noel has had feeding issues ever since she first got a g-tube in April 07, she then got a nissen which was suppose to stop her throwing up, unfortunately it doesn’t stop the feeling of having to throw up, it just makes it so nothing will come out. So Noel has been retching ever since October 07, the doctors said it should get better within weeks of her surgery; we’re here a year and a half later and things haven’t gotten better, they’ve progressively gotten worse. I have taken her to doctor after doctor to try and get answers and then at some point I just got use to her feeding issues. It wasn’t until this past weekend when I talked with other moms who children have g-tubes that I realized just how bad things are with Noel.
The doctors are talking about placing a G-J feeding tube this tube would bypass her stomach and feed her straight into her jejunum (her small intestines.) If this procedure works properly Noel should be able to eat without retching; something she’s never been able to do. We have tried different formulas, different feed rates, different positions, everything and nothing seems to help. The biggest draw back to the G-J tube is that Noel would have to eat 24/7. Since there isn’t extra room for the food to sit in the small intestines you have to give a small amount of food continuously. The thing is right now with how long it takes her to eat she is almost getting a continuous feed. So we’ll see how things go today, I want then to try and figure out why she’s retching so that way when she is ready to use her stomach to eat we won’t have to go through all of this again. So that’s all for now, but I’ll keep you posted.
Tina
The doctors are talking about placing a G-J feeding tube this tube would bypass her stomach and feed her straight into her jejunum (her small intestines.) If this procedure works properly Noel should be able to eat without retching; something she’s never been able to do. We have tried different formulas, different feed rates, different positions, everything and nothing seems to help. The biggest draw back to the G-J tube is that Noel would have to eat 24/7. Since there isn’t extra room for the food to sit in the small intestines you have to give a small amount of food continuously. The thing is right now with how long it takes her to eat she is almost getting a continuous feed. So we’ll see how things go today, I want then to try and figure out why she’s retching so that way when she is ready to use her stomach to eat we won’t have to go through all of this again. So that’s all for now, but I’ll keep you posted.
Tina
Wednesday, February 11, 2009
Noel's Anniversary
This post is a little long and early
but Noel and I will be out of town on Monday.
Monday marks Noel’s year anniversary with a trach. This may sound sad but I actually had to go back to Noel’s Carepage to find out the exact date she got her trach. At the time everything happened so fast it was just a blur. I do however, remember the first time I knew a trach would be in our near future. On January 23 early in the morning I walked out of the elevator at Children’s Hospital to a site that made me very sad. I saw a little girl who looked a lot like Noel, dark hair and all, her mom was holding her and she had tubes. She was such a little girl maybe a year old and she had all of these tubes coming out of her neck. Up until then the only experience I had with trachs was through pictures my Aunt, who worked in a NICU, had of little kids with trachs. The only thing I remembered of the pictures was something blue was always attached to the trach. So I did now what was going on with the little girl but the only thing I could think was “No, No God, not me, not Noel, please?” It was just that morning that I finally asked the doctors why they were so cautious to intubate Noel. The answer was if they had to intubate her they were afraid that they could never get the tube back out, which would mean she would end up with a trach. Seeing that little girl made me think, “I can’t do that, there’s no way, Noel is hard enough to handle now I can’t imagine being able to hold her or move her with all of those tubes.” I spent the next hour crying to Scott and he just kept re-assuring me that Noel wasn’t going to get a trach; I wanted to believe him but somehow I knew she was going to end up with one.
It was the next night at 11:30 when they had to intubate Noel, the second they said those words I knew they were really saying “Noel is ultimately going to end up with a trach.” The next few weeks we tried and failed many times at extubating Noel, all the while I knew how it would end. Instead of being in denial about the inevitable I started to get information; of course I turned straight to Aaron’s Page it’s a website all about trachs, it has tons of stories about children with trachs. The more I learned the more I realized that yes I can do this and ultimately I’m going to have to. We had lots of support before her surgery; we met two amazing kids (Faith and Milo) and their families who made the scary process so much easier.
In the year since she received her trach life has completely changed. In the beginning we thought Noel would be off the vent in no time; a year later she is still on it. While at times I would love to move her without tubes, run to the store without a vent, sleep without annoying alarms; at other times I can’t help but be so thankful she has this piece of machinery, it’s given her so much. The benefits she has received from this life-support machine far out ways the hassles and headaches it’s given me. This vent has given Noel life; something that is so precious and so miraculous. So while I would love to wish the Vent farewell I am deeply indebted to this sometimes highly-annoying piece of technology; it has taken Noel far beyond anywhere I could have imagined.
but Noel and I will be out of town on Monday.
Monday marks Noel’s year anniversary with a trach. This may sound sad but I actually had to go back to Noel’s Carepage to find out the exact date she got her trach. At the time everything happened so fast it was just a blur. I do however, remember the first time I knew a trach would be in our near future. On January 23 early in the morning I walked out of the elevator at Children’s Hospital to a site that made me very sad. I saw a little girl who looked a lot like Noel, dark hair and all, her mom was holding her and she had tubes. She was such a little girl maybe a year old and she had all of these tubes coming out of her neck. Up until then the only experience I had with trachs was through pictures my Aunt, who worked in a NICU, had of little kids with trachs. The only thing I remembered of the pictures was something blue was always attached to the trach. So I did now what was going on with the little girl but the only thing I could think was “No, No God, not me, not Noel, please?” It was just that morning that I finally asked the doctors why they were so cautious to intubate Noel. The answer was if they had to intubate her they were afraid that they could never get the tube back out, which would mean she would end up with a trach. Seeing that little girl made me think, “I can’t do that, there’s no way, Noel is hard enough to handle now I can’t imagine being able to hold her or move her with all of those tubes.” I spent the next hour crying to Scott and he just kept re-assuring me that Noel wasn’t going to get a trach; I wanted to believe him but somehow I knew she was going to end up with one.
It was the next night at 11:30 when they had to intubate Noel, the second they said those words I knew they were really saying “Noel is ultimately going to end up with a trach.” The next few weeks we tried and failed many times at extubating Noel, all the while I knew how it would end. Instead of being in denial about the inevitable I started to get information; of course I turned straight to Aaron’s Page it’s a website all about trachs, it has tons of stories about children with trachs. The more I learned the more I realized that yes I can do this and ultimately I’m going to have to. We had lots of support before her surgery; we met two amazing kids (Faith and Milo) and their families who made the scary process so much easier.
In the year since she received her trach life has completely changed. In the beginning we thought Noel would be off the vent in no time; a year later she is still on it. While at times I would love to move her without tubes, run to the store without a vent, sleep without annoying alarms; at other times I can’t help but be so thankful she has this piece of machinery, it’s given her so much. The benefits she has received from this life-support machine far out ways the hassles and headaches it’s given me. This vent has given Noel life; something that is so precious and so miraculous. So while I would love to wish the Vent farewell I am deeply indebted to this sometimes highly-annoying piece of technology; it has taken Noel far beyond anywhere I could have imagined.
Monday, February 9, 2009
Wide Awake!
OK so I've been wide awake since 3 am, it's now almost 6. Should I try going back to bed? Or should I make my way to the kitchen to make a pot of coffee? I think the latter is the one I'll end up doing. And why am I awake you might ask yourself?
Well lest see was it…
A: Noel’s pulse ox probe going off because her O2 was dropping; looks like I didn’t get her liquid oxygen filled in time (Reminder of a phone call to make today.) So I had to connect her to a portable O2 Canister. Alright fixed that now back to sleep.
Nope; now it seems that her pulse ox doesn’t want to “pick up” at all and after 5 minutes of beep beep beeep beeeep beep I threw in the towel, I know she has O2 so she should be ok. Back to sleep…
But then there was…
B: Now Noel’s Vent needs it’s own turn to torment me with Alarms, more beep beep beeep this time it’s low pressure because when Noel’s sleeps she get’s really comfy and lets all of the air come out of her nose and mouth. Ok reposition Noel; check… adjust the vent settings; Check. Now I can go back to sleep…
Nope...
C: right when I fall back to sleep, Noel’s feeding pump alarms me right out of sleep yet again. Turn that off, ok back to sleep… Now I’m just laying here thinking of all the things I don’t want to be thinking about right now, worrying about things I have absolutely no control over in the dead on night. Fine I throw in the towel (yet again) and decided to at least get out of bed (it's only 3 am why not?) Maybe I can do something productive. other than tossing and turning. Looks like I’ll get to watch the sun-rise, it’s something I’ve been meaning to do for awhile! Maybe tonight night I’ll catch some zzz’s?
P.S. Jen I know you’re probably thinking wait a minute Tina got more sleep this one night than I’ve gotten in forever… Sorry; Here’s to hoping that you can catch some zzz’s tonight too!
Well lest see was it…
A: Noel’s pulse ox probe going off because her O2 was dropping; looks like I didn’t get her liquid oxygen filled in time (Reminder of a phone call to make today.) So I had to connect her to a portable O2 Canister. Alright fixed that now back to sleep.
Nope; now it seems that her pulse ox doesn’t want to “pick up” at all and after 5 minutes of beep beep beeep beeeep beep I threw in the towel, I know she has O2 so she should be ok. Back to sleep…
But then there was…
B: Now Noel’s Vent needs it’s own turn to torment me with Alarms, more beep beep beeep this time it’s low pressure because when Noel’s sleeps she get’s really comfy and lets all of the air come out of her nose and mouth. Ok reposition Noel; check… adjust the vent settings; Check. Now I can go back to sleep…
Nope...
C: right when I fall back to sleep, Noel’s feeding pump alarms me right out of sleep yet again. Turn that off, ok back to sleep… Now I’m just laying here thinking of all the things I don’t want to be thinking about right now, worrying about things I have absolutely no control over in the dead on night. Fine I throw in the towel (yet again) and decided to at least get out of bed (it's only 3 am why not?) Maybe I can do something productive. other than tossing and turning. Looks like I’ll get to watch the sun-rise, it’s something I’ve been meaning to do for awhile! Maybe tonight night I’ll catch some zzz’s?
P.S. Jen I know you’re probably thinking wait a minute Tina got more sleep this one night than I’ve gotten in forever… Sorry; Here’s to hoping that you can catch some zzz’s tonight too!
Wednesday, February 4, 2009
Some People!?!?
This morning I called to change Noel’s doctor to our pervious pediatric practice; I was told about this great doctor who has recently seen a trach-vented patient. I am really excited at the possibility of having a doctor that I am comfortable with and confident in . So I called the office and since Noel has been a patient there before all of her records pulled up. The receptionist proceeds to tell me that we had an appointment that we missed to she’s not sure if Noel can be seen there. She told me the appointment was on January 21, 2008, hmm, Noel was laying in the PICU at The Children’s Hospital at the time, why wasn’t cancelling the appointment the first thing on my mind? I tell the receptionist, “Noel was in the hospital at the time barley alive so that’s why I didn’t cancel it. ”She then tells me, very nonchalantly, “Oh I know, but you still have to cancel your appointment.” What??? You know? You know what it’s like to see your baby laying there helpless unable to breath on her own? Seeing her condition rapidly worsen? Were you there? Do you know the life we have lived this last year with a two year old who is on life-support?? I can’t believe how absolutely insensitive people can be. Please don’t tell me you know, that was so rude! I know it’s just a silly receptionist, but for some reason her in-sensitiveness really hurt me. It’s hard sometimes even when people who we know say they know what we’re going through, let alone some stranger over the phone. It would have been nice if she could have a least acknowledge what I told her and at least followed up with an “I am sorry to hear that.” Needless to say I am going to talk with the office manager about the situation. I know I shouldn’t expect more out of people these days, but still a little human respect would be nice. Thanks for letting me vent.
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