Tomorrow will be one year since X first received his feeding tube. Actually it will be a year since I first put the ng tube down his nose and into his stomach. That is something I will never do again.
This was supposed to be a three month deal.
I'm not sure how I feel about all of it. I am thrilled to see how well X is doing. He can take walks with us without having to be carried all the way. He doesn't need to be carried up the stairs anymore. He is wearing 4T shorts. 4T! Last year he was wearing 18 month shorts and 2T shirts. He is growing into his personality and has energy to spare. All of this is amazing and wonderful.
I am also not thrilled that he still has the feeding tube. We have had to accept this feeding tube is a part of our lives and we have had to work around it. We still don't know why X doesn't eat like he should. We don't know why he gets so sick when he catches any little bug. We don't have any answers really about anything. Which makes me fear that he may need the feeding tube for a very long time.
This summer I purposely took a break from tests for X and took a break from researching stuff. I wanted this summer to be filled with sun and fun, and that it has been. As summer comes to end, I know we need to start looking into things again, and that makes me fearful. I am of two things. One, that we will never figure out what is going on and that X will need the feeding tube for the rest of his life. Two, that he has some degenerative disease that they haven't figured out yet. Crazy, I know, but the unknown is one of my biggest fears.
I wanted to write so much more, but I'm having a hard time getting my thoughts together. I've had a lot of mixed emotions with the year anniversary coming up. I truly believed that he would not have the feeding tube at this point. I've also had a couple nightmares about the ng tube. I hope to never have them again.
So, it will be a year tomorrow and we are going to enjoy the glorious weather we have been blessed with.
- Posted using BlogPress from my iPad
Wednesday, August 29, 2012
Saturday, August 11, 2012
'tude
I've had a bad attitude this week about X's feeding tube and everything that goes with it. Sleep deprivation definitely plays a role and I think the fact the we are coming up on the year mark for the tube also plays a role. And sometimes, my attitude just stinks. I go through cycles with a good attitude, then a bad attitude.
Today, I am going to list the things I am grateful for instead of whining (which is what I want to do).
It has only taken a week for X to get through his illness and for the throwing up to stop. This is a record for him and tells me he is, in fact doing better than a few months ago.
The feeding tube is working. Although he has lost a pound, he can now afford to lose a pound because he has a good weight.
We have good insurance. That is two things to be thankful for. The fact that we have insurance and that it is good.
X has a good team of doctors and nurses caring for him. I've read some horror stories about medical professionals who were not as good.
Whenever X is having a hard time medically over the weekend, his family doctor or his GI doctor (and sometimes both) are oncall the same weekend. Every time. That is a huge blessing.
X slept in until 10:00am today and took a 3 hour nap yesterday. Those are two beautiful things.
The weather is beautiful.
These are all good things to be thankful for even though life is a bit more challenging at the moment.
- Posted using BlogPress from my iPad
Today, I am going to list the things I am grateful for instead of whining (which is what I want to do).
It has only taken a week for X to get through his illness and for the throwing up to stop. This is a record for him and tells me he is, in fact doing better than a few months ago.
The feeding tube is working. Although he has lost a pound, he can now afford to lose a pound because he has a good weight.
We have good insurance. That is two things to be thankful for. The fact that we have insurance and that it is good.
X has a good team of doctors and nurses caring for him. I've read some horror stories about medical professionals who were not as good.
Whenever X is having a hard time medically over the weekend, his family doctor or his GI doctor (and sometimes both) are oncall the same weekend. Every time. That is a huge blessing.
X slept in until 10:00am today and took a 3 hour nap yesterday. Those are two beautiful things.
The weather is beautiful.
These are all good things to be thankful for even though life is a bit more challenging at the moment.
- Posted using BlogPress from my iPad
Wednesday, August 8, 2012
Will of Steel ( I was going to title this Iron Will, but that's a movie title)
X has a will of steel. It's a beautiful, amazing, maddening, bring me to my knees in prayer kind of will.
Without this strong will, I believe X would not deal with his feeding tube as well as he is.
Without the will, the few cares we need to do for the tube would go a lot more smoothly.
Without X's will, he would not be the adventurer and and risk taker that he is.
Without his will, I would be able to breathe easier and relax during the day.
Without this incredible will, X would be full of compromises and not as determined.
Without his will, I would probably have more quiet moments in our house.
X's will truly is an asset for him. It's challenging to parent and has given me plenty of gray hairs, but I believe he would not be doing as well as he is without it. It also keeps me from slacking as a parent.
When X is behind on calories and nutrition, he is ornery (as anyone would be), however having this strong will takes orneriness to a whole new level. It is fairly common for X to scream at the top of his lungs for a solid hour if he does not get his way or if he has to wait for something. It is not unheard of for him to scream 2+ hours (maybe I should look into Opera lessons for him; that boy has quite a set of lungs on him).
I know X's will can serve him well as he gets older. My prayer is that we parent him well, so that amazing will is used for good.
This was our day yesterday. It was a loud day. In these moments of X's anger and frustration, he does not want to comforted. He does not want to be near anyone. So I give him space. Which is incredibly hard for me to do. I want to read to him, sit with him, hold him.
At times like these, I often think I must look like this to God. Red faced, screaming, crying, shaking my fists in the air, yelling at Him to "go away", and refusing to be comforted. Only it doesn't last for an hour or two. It lasts for days, weeks, months and even years.
Last night, X tolerated his formula at a little faster rate. He is getting a little over half of his required calories now. This morning has been easier. He's still a little "on the edge", but nothing like yesterday. I am grateful for that. He did not throw up last night. He coughed a ton, but no puking. I am grateful for that as well. I am still a little too scared to put the puke buckets away, but am grateful for no puking the last two nights. That has never happened since he received his feeding tube last August.
At the end of the month it will be a year since X first received his feeding tube. It was supposed to be a 3 month gig, but that's another post.
- Posted using BlogPress from my iPad
Without this strong will, I believe X would not deal with his feeding tube as well as he is.
Without the will, the few cares we need to do for the tube would go a lot more smoothly.
Without X's will, he would not be the adventurer and and risk taker that he is.
Without his will, I would be able to breathe easier and relax during the day.
Without this incredible will, X would be full of compromises and not as determined.
Without his will, I would probably have more quiet moments in our house.
X's will truly is an asset for him. It's challenging to parent and has given me plenty of gray hairs, but I believe he would not be doing as well as he is without it. It also keeps me from slacking as a parent.
When X is behind on calories and nutrition, he is ornery (as anyone would be), however having this strong will takes orneriness to a whole new level. It is fairly common for X to scream at the top of his lungs for a solid hour if he does not get his way or if he has to wait for something. It is not unheard of for him to scream 2+ hours (maybe I should look into Opera lessons for him; that boy has quite a set of lungs on him).
I know X's will can serve him well as he gets older. My prayer is that we parent him well, so that amazing will is used for good.
This was our day yesterday. It was a loud day. In these moments of X's anger and frustration, he does not want to comforted. He does not want to be near anyone. So I give him space. Which is incredibly hard for me to do. I want to read to him, sit with him, hold him.
At times like these, I often think I must look like this to God. Red faced, screaming, crying, shaking my fists in the air, yelling at Him to "go away", and refusing to be comforted. Only it doesn't last for an hour or two. It lasts for days, weeks, months and even years.
Last night, X tolerated his formula at a little faster rate. He is getting a little over half of his required calories now. This morning has been easier. He's still a little "on the edge", but nothing like yesterday. I am grateful for that. He did not throw up last night. He coughed a ton, but no puking. I am grateful for that as well. I am still a little too scared to put the puke buckets away, but am grateful for no puking the last two nights. That has never happened since he received his feeding tube last August.
At the end of the month it will be a year since X first received his feeding tube. It was supposed to be a 3 month gig, but that's another post.
- Posted using BlogPress from my iPad
Monday, August 6, 2012
Back Again
X is not able to tolerate his formula again. I wish I knew what was going on in his gut. Whenever he has any kind of "bug", he cannot tolerate his formula and he is not hungry. I am wondering if his motility slows way down. I'll have to call the GI doctor on that one.
X was able to get 300 calories of his 1200 last night and then it was straight pedialyte. We tried a reduced rate of his formula and mixed it with pedialyte, but that didn't help. This evening I will try a slower rate and dilute it more. He is crashed out right now and getting pedialyte because he is so tired and was almost to the point of starting to get lethargic. (he was sleeping on the couch, but woke up and insisted he needs to sleep on The floor) It's amazing how quickly he loses energy and becomes dehydrated.
I can tell the pedialyte isn't sitting all that well with him either. Which is new. He's never had a problem with the pedialyte. It's all so frustrating, because we don't know why the change in his formula worked in the first place.
Well, the puke buckets are back out and I need to be close by him again. Which is a bummer, because it is so gorgeous outside. He should be out enjoying the weather. Praying this cold doesn't stick around long. Dumb germs.
- Posted using BlogPress from my iPad
X was able to get 300 calories of his 1200 last night and then it was straight pedialyte. We tried a reduced rate of his formula and mixed it with pedialyte, but that didn't help. This evening I will try a slower rate and dilute it more. He is crashed out right now and getting pedialyte because he is so tired and was almost to the point of starting to get lethargic. (he was sleeping on the couch, but woke up and insisted he needs to sleep on The floor) It's amazing how quickly he loses energy and becomes dehydrated.
I can tell the pedialyte isn't sitting all that well with him either. Which is new. He's never had a problem with the pedialyte. It's all so frustrating, because we don't know why the change in his formula worked in the first place.
Well, the puke buckets are back out and I need to be close by him again. Which is a bummer, because it is so gorgeous outside. He should be out enjoying the weather. Praying this cold doesn't stick around long. Dumb germs.
- Posted using BlogPress from my iPad
Sunday, August 5, 2012
Take it Easy
So, X threw up last night. And had a fever this morning. He was actually laying on the couch, covered up with a blanket, and quiet. Craig and I were going to some family friends' 50th anniversary celebration at Glensheen and were looking forward to be kid free and dressed up. That didn't happen. Craig stayed home with X.
I am trying to "take it easy" (whenever I say that I hear Nacho Libre saying it. I love that movie). I am not doing all that well "taking it easy". In fact, I should be hooking X up to his feeding pump right now, but I am stalling. X typically does well when he isn't hooked up, it's when he is getting his formula that causes problems. I know we have a plan and I have initiated the plan, but I am scared. Scared he'll get dehydrated again, be hospitalized again, we'll need puke buckets in every room again, and on and on.
This is random, but a few nights ago I noticed one of my hair clips was broken. I was brought right back to the hospital. From a dumb broken hair clip. But they all broke at the hospital and I wore them all the time and Craig had to get me new ones. I immediately remembered how my stomach felt, the exhaustion, the surrealism of it all, the smell of the hospital. All from a hair clip. Weird.
You know the verse, "do not worry about tomorrow....."? For me it's "do not worry about the next hour, half hour, ten minutes". I am still learning to live in the moment, to trust that God has this, that my anxiety will change nothing, and that Jesus will continue to give me whatever I need to help X. That being said, I am almost in tears thinking about hooking him up soon. So, I will take a deep breath, say a prayer, give this over to God, "take it easy" ( in a Nacho Libre voice), and hook X up to his feeding pump.
- Posted using BlogPress from my iPad
I am trying to "take it easy" (whenever I say that I hear Nacho Libre saying it. I love that movie). I am not doing all that well "taking it easy". In fact, I should be hooking X up to his feeding pump right now, but I am stalling. X typically does well when he isn't hooked up, it's when he is getting his formula that causes problems. I know we have a plan and I have initiated the plan, but I am scared. Scared he'll get dehydrated again, be hospitalized again, we'll need puke buckets in every room again, and on and on.
This is random, but a few nights ago I noticed one of my hair clips was broken. I was brought right back to the hospital. From a dumb broken hair clip. But they all broke at the hospital and I wore them all the time and Craig had to get me new ones. I immediately remembered how my stomach felt, the exhaustion, the surrealism of it all, the smell of the hospital. All from a hair clip. Weird.
You know the verse, "do not worry about tomorrow....."? For me it's "do not worry about the next hour, half hour, ten minutes". I am still learning to live in the moment, to trust that God has this, that my anxiety will change nothing, and that Jesus will continue to give me whatever I need to help X. That being said, I am almost in tears thinking about hooking him up soon. So, I will take a deep breath, say a prayer, give this over to God, "take it easy" ( in a Nacho Libre voice), and hook X up to his feeding pump.
- Posted using BlogPress from my iPad
Subscribe to:
Comments (Atom)