Yeah, so I started today out feeling better about the 'situation' and even got as far as to write a post about the good news. Then the rest of my day took over and now I feel desperately unhappy again.
I'm just not getting a good grip on Little O's feeds. I've been trying for so long to adapt and persevere, but it seems like there's a constant wall up ahead that I can't climb over. Since he came home from the hospital on June 10th, 2009, my husband and I have battled and battled to make sure Little O has been fed properly and makes gains in his growth and development. We've tried so hard to offer him a variety of foods; changed formulas three times (four if you include breastmilk); worked with gravity feeds, pump feeds, bottle feeds, spoon feeds, safety-feeder feeds; and all along we've had experts in our ears telling us to 'switch this', or 'stick with that'.
I'm exhausted, and I've spent a great deal of today in tears. Last week we weighed Little O on our home scales and were dismayed to see he still hasn't gained any weight since April. April! I took him to Seattle in April.... it seems a very long time ago. After noticing this problem I called his nutritionist and suggested to her we try feeding him his PediaSure when he's asleep ONLY. He's generally a very good sleeper and will sleep for about 11 or 12 hours at night and another three or four in the afternoon, so the idea of slowly pump-feeding him while he naps seems like a good solution. The theory is that he'll not only stop throwing up (because the rate is so slow on the pump), but it will also free up large portions of the day to concentrate on oral feeds. If I'm not having to force liquid nutrition into him while also forcing a spoon into his mouth, it means he's less likely to throw up solids, AND he'll hopefully enjoy oral feeds more. And then, the more oral intake he has, the less liquid nutrition he needs.
IMAGINE! Imagine this glorious world where your baby boy doesn't live in constant pain. Imagine packing the burp cloths and wipe-up rags into storage because you don't have to mop up sick five times a day. Imagine feeding your child like any other family, where dinner time isn't battle-time and you don't have to mentally and physically gear yourself up for war. Imagine putting your child to bed knowing they've felt no discomfort all day and that they can look forward to a tomorrow where eating is a nice, enjoyable activity. Just imagine...
Today I can't imagine this world. This world seems very far away. My baby boy is nearly 15-months-old and his reflux is still the hardest challenge he faces. He woke up several times in the night to throw up or just scream, and even when I went in at 7.30am, the pump still had nearly 100ml left to go. I don't know what to do. I can't set the pump to go any faster because he'll just throw it up, and I can't leave the food in the bag because he needs the nutrition to grow. I can't run the pump for longer because he needs to be asleep, and I can't let him sleep for longer because then he won't nap in the afternoon...
Yesterday I was so pleased that Little O went down for his nap at 12pm and slept right through until 3.30pm. I was pleased, because it meant he got all his PediaSure and I didn't have to worry about a thing. That was, until I went to wake him up and saw that the med-port on his extension tube (the tube that clicks into his stomach) had popped open during his nap, and he was laying in a large, wet pool of pink PediaSure. So after three and a half hours of pump operation, Little O had digested exactly nothing. Nada. Zilch. And this morning I went in at 7.30am because he was yelling his head off, only to discover that he'd thrown up a large volume of goo, and was now laying in a large, wet pool of chocolate PediaSure. And that brown stuff STAINS. So, for the second time in two days I had to change his bedclothes, comfort a soaking wet little boy, and fret about the fact he's not getting enough food digested.
I am just SO DONE WITH REFLUX! I cannot, cannot keep fighting this battle. I just can't do it. I don't have the patience. I certainly don't have the energy. I cannot keep explaining to experts how horrific our lives have become only to have them dismiss my words. I'm so sad and angry and frustrated. I need for this to go away; I need a Fairy Godmother to come and visit my house and whisk us all away to that lovely other world where Little O doesn't cry out in pain in the middle of the night and where bedsheets aren't stained to the point of embarrasment. I need for someone else to take care of us. I need to be able to focus on something, anything else but whether my son is growing and eating and comfortable. I need a break. A real, honest break.
I need to see to my sister. I really miss her. I miss both my sisters, but sometimes you just need a hug from your big sister and you get the energy back to fight another day.
God, I need some help. And I need to stop crying.
Tina.
Showing posts with label Crap. Show all posts
Showing posts with label Crap. Show all posts
Wednesday, August 4, 2010
Monday, April 19, 2010
Oh. My. Good. God.
First off, I couldn't weigh myself this morning because before I could, the toilet overflowed.
Mike gets up earlier than me (at 5am, which is plainly ridiculous), and this morning he took the opportunity a dark, quiet house offered him and spent some time on the toilet doing whatever it is men do in there for sooooo long. After he left (5.30am: still ridiculous), I slept for another hour or so, then got up at 7am to start my day. I went in to the bathroom, lifted the lid of the toilet, and noticed that Mike either hadn't flushed when he'd finished, or our toilet was clogged. So, because it was 7am and I'm not at my most coherent at that time of the morning, I decided to give it another flush to *ahem* help things along.
Oh. My. Good. God.
The toilet literally vomited out its entire contents on to the bathroom floor, including everything Mike had deposited there earlier. I think I screamed, or whimpered, or did something fairly sissy-ish, and then grabbed some old towels and literally threw them on the floor, thinking this would somehow help. It did not. To use the term "chunky water" is not something I do light-heartedly, but I feel it's appropriate in this instance. It was brown, yellow and had dark chunks of godawfulness floating in it. I then jumped over the towels on to a dry patch and chucked down the pan some de-clogging gel we have in the cupboard, shut the door and scarpered. This, my dear friends, is MIKE'S FAULT, and I am fully prepared to sacrifice some towels and bathmats if it means I don't have to *literally* clean up my husband's shit.
I did tell him about it though. I didn't let him discover it for himself at a later time. That would have just been cruel.
So, after this incident at 7am, I realised I was running late. Owen had to up, changed and eating by 8am, and I had to have the house clean, myself dressed and him done with refluxing by 10am because the Occupational Therapist was coming over for an assessment. I think Owen knew how stressed I already was, because halfway through his feed he took supreme pleasure in doing one of the largest dumps he's ever done, and it exploded out of his nappy on to his back, legs, highchair, blankets and, once I got him on to the floor to change him, the carpet, his hands and some of me.
Oh. My. Good. God.
I got him cleaned up, met with the OT, fed Owen again and made it to CHOW with about ten minutes to spare. Met with his Craniofacial doctor (the one we don't like) and his fabulously glam new nurse (whom we do), and left CHOW feeling much more upbeat. So upbeat, in fact, I turned up the stereo and put my foot down on the motorway. The speed limit went down to 55mph at one point due to road works, so I natually slowed down a little bit, then when it changed back to 65mph, I sped up to 73mph. This is the speed I normally do on the motorway, and as I'm constantly being overtaken my other vehicles doing in excess of 80mph, I think nothing of it. Today, this was not the case.
Oh. My. Good. God.
Not ONLY did I get my first ever speeding ticket, but because I sped up to 73mph coming out of a 55mph work zone, my fine was doubled.. DOUBLED!! I have gone from having a clean, perfect driving record to points on my licence and a $236 fine. I was gobsmacked. Well behaved in front of the police officer, but gobsmacked. And I'm too ashamed to tell Mike. I may have seen his shit, but telling him I have a speeding ticket is cheek-burning embarrasing because I'm always crowing my superior driving skills at him.
After all this nonsense I decided to call my sister in the UK to find out about her weekend under some Icelandic volcanic ash, and whether or not she made it to her friend's wedding out in Ireland, but our sodding phones kept disconnecting and I only got as far as Owen's blowout. This is too bad, because I really, really, REALLY need to vent.
They say things come in threes, but my day has already had so much crap in it (literally!), that I'm just expecting more of the same later on. What a disasterous Monday.
Tina.
Mike gets up earlier than me (at 5am, which is plainly ridiculous), and this morning he took the opportunity a dark, quiet house offered him and spent some time on the toilet doing whatever it is men do in there for sooooo long. After he left (5.30am: still ridiculous), I slept for another hour or so, then got up at 7am to start my day. I went in to the bathroom, lifted the lid of the toilet, and noticed that Mike either hadn't flushed when he'd finished, or our toilet was clogged. So, because it was 7am and I'm not at my most coherent at that time of the morning, I decided to give it another flush to *ahem* help things along.
Oh. My. Good. God.
The toilet literally vomited out its entire contents on to the bathroom floor, including everything Mike had deposited there earlier. I think I screamed, or whimpered, or did something fairly sissy-ish, and then grabbed some old towels and literally threw them on the floor, thinking this would somehow help. It did not. To use the term "chunky water" is not something I do light-heartedly, but I feel it's appropriate in this instance. It was brown, yellow and had dark chunks of godawfulness floating in it. I then jumped over the towels on to a dry patch and chucked down the pan some de-clogging gel we have in the cupboard, shut the door and scarpered. This, my dear friends, is MIKE'S FAULT, and I am fully prepared to sacrifice some towels and bathmats if it means I don't have to *literally* clean up my husband's shit.
I did tell him about it though. I didn't let him discover it for himself at a later time. That would have just been cruel.
So, after this incident at 7am, I realised I was running late. Owen had to up, changed and eating by 8am, and I had to have the house clean, myself dressed and him done with refluxing by 10am because the Occupational Therapist was coming over for an assessment. I think Owen knew how stressed I already was, because halfway through his feed he took supreme pleasure in doing one of the largest dumps he's ever done, and it exploded out of his nappy on to his back, legs, highchair, blankets and, once I got him on to the floor to change him, the carpet, his hands and some of me.
Oh. My. Good. God.
I got him cleaned up, met with the OT, fed Owen again and made it to CHOW with about ten minutes to spare. Met with his Craniofacial doctor (the one we don't like) and his fabulously glam new nurse (whom we do), and left CHOW feeling much more upbeat. So upbeat, in fact, I turned up the stereo and put my foot down on the motorway. The speed limit went down to 55mph at one point due to road works, so I natually slowed down a little bit, then when it changed back to 65mph, I sped up to 73mph. This is the speed I normally do on the motorway, and as I'm constantly being overtaken my other vehicles doing in excess of 80mph, I think nothing of it. Today, this was not the case.
Oh. My. Good. God.
Not ONLY did I get my first ever speeding ticket, but because I sped up to 73mph coming out of a 55mph work zone, my fine was doubled.. DOUBLED!! I have gone from having a clean, perfect driving record to points on my licence and a $236 fine. I was gobsmacked. Well behaved in front of the police officer, but gobsmacked. And I'm too ashamed to tell Mike. I may have seen his shit, but telling him I have a speeding ticket is cheek-burning embarrasing because I'm always crowing my superior driving skills at him.
After all this nonsense I decided to call my sister in the UK to find out about her weekend under some Icelandic volcanic ash, and whether or not she made it to her friend's wedding out in Ireland, but our sodding phones kept disconnecting and I only got as far as Owen's blowout. This is too bad, because I really, really, REALLY need to vent.
They say things come in threes, but my day has already had so much crap in it (literally!), that I'm just expecting more of the same later on. What a disasterous Monday.
Tina.
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