Today Benji has a well child exam. As you may imagine, those have been unheard of in this little boy's life. On one hand I am kind of excited because he has just recently made it onto the growth charts. Goodbye less that 3rd percentile! On the other hand, I have the monthly lab order to monitor his renal, liver, and general health function, plus his iron stores. For the past 2 years these have been relatively simple by using his port.
Ugh.
Missing that port this morning! I woke up debating if it will take 2 or 10 pokes to get these labs. Will we have to do them today to get back on track (the port has been out since December) or can the poor little guy hold out for another week or so. And how much screaming will be involved?
I think I need that crazy Olympic guy who gets the crowds all excited to come and by my house and get me excited. Or to deliver a dose of Xanax for mommy.
Monday, February 22, 2010
Friday, February 19, 2010
The birthday that almost wasn't....
Yes. This child is actually turning three today. I am in a state of awe that we have kept him alive this long. I am kind of a wreck over his birthday this week and I keep finding myself teary over the number of times he has been so sick over the past three years, the fac that every milestone is like climbing a mountain, that he has been cut open so many times, that his life will never be "normal", etc....
So yesterday by noon he had spent all but about 20 minutes of the day fussing and crying, pulling at his diaper, and complaining his "pee" hurt. Can you say panic attack waiting to happen?
Benji has not had a UTI since October. Over the past week he has had more and more redness around his urinary stoma (for those of you that have not been as lucky as the UPS guy who recently saw him naked- think "hole the size of a shotgun wound" in his bladder. Ugh). By late afternoon he was more irritable and restless. In my mind I had already figured out it was a UTI which was justifiable being he's had, like, 27 of them in 3 years. By 3 PM I was pretty sure that we would be cancelling the birthday party. I decided I would give it until Glenn got home and then most likely head to the ER. I thought about just calling to see if we could drop off a UA but then realized that we don't even have any catheters anymore. I just know how much Glenn loves to walk in the door to find that we are taking a trip. At about 4 PM, Benji's temp was still at about 99 which is high for him- his norm is about 97, however his urine output was unchanged and he was happy whenever I took his diaper off.
What the heck?
While we were in his bedroom doing his meds he picked up a diaper and told me that they are "tickle diapers."
Huh?
Then the light bulb went on. Earlier in the month our supplier quit carrying Benji's Tena briefs and sent us 300 adult diapers. They are big enough to fit Glenn. So, I switched him to pull-ups because they come up higher than baby diapers. Unfortunately I bought the "Cool Alert" Pullups. You know- designed to teach a kid that when they start to feel that tingly cool feel that they need to get their behind to the bathroom. Too bad they didn't have this when Isaac was a toddler!
Well....for our boy with no potential of bladder control and a shotgun hole that constantly leaks urine.....those pullups were giving him a continual cool blast to very sensitive bladder tissue on the outside of his skin. Luckily we had some diapers in the car, in the wheelchair bag, in my purse, etc, etc. I gathered up enough to get us through the night. Today we are going to buy pullups that do not give the icy sensation.
Sigh......I can not believe what a truly bad mommy moment that was. Yesterday I was horrified, today I can laugh about it. Sort of. Now that I am not so upset I will have to remember to tell his urologist.
So yesterday by noon he had spent all but about 20 minutes of the day fussing and crying, pulling at his diaper, and complaining his "pee" hurt. Can you say panic attack waiting to happen?
Benji has not had a UTI since October. Over the past week he has had more and more redness around his urinary stoma (for those of you that have not been as lucky as the UPS guy who recently saw him naked- think "hole the size of a shotgun wound" in his bladder. Ugh). By late afternoon he was more irritable and restless. In my mind I had already figured out it was a UTI which was justifiable being he's had, like, 27 of them in 3 years. By 3 PM I was pretty sure that we would be cancelling the birthday party. I decided I would give it until Glenn got home and then most likely head to the ER. I thought about just calling to see if we could drop off a UA but then realized that we don't even have any catheters anymore. I just know how much Glenn loves to walk in the door to find that we are taking a trip. At about 4 PM, Benji's temp was still at about 99 which is high for him- his norm is about 97, however his urine output was unchanged and he was happy whenever I took his diaper off.
What the heck?
While we were in his bedroom doing his meds he picked up a diaper and told me that they are "tickle diapers."
Huh?
Then the light bulb went on. Earlier in the month our supplier quit carrying Benji's Tena briefs and sent us 300 adult diapers. They are big enough to fit Glenn. So, I switched him to pull-ups because they come up higher than baby diapers. Unfortunately I bought the "Cool Alert" Pullups. You know- designed to teach a kid that when they start to feel that tingly cool feel that they need to get their behind to the bathroom. Too bad they didn't have this when Isaac was a toddler!
Well....for our boy with no potential of bladder control and a shotgun hole that constantly leaks urine.....those pullups were giving him a continual cool blast to very sensitive bladder tissue on the outside of his skin. Luckily we had some diapers in the car, in the wheelchair bag, in my purse, etc, etc. I gathered up enough to get us through the night. Today we are going to buy pullups that do not give the icy sensation.
Sigh......I can not believe what a truly bad mommy moment that was. Yesterday I was horrified, today I can laugh about it. Sort of. Now that I am not so upset I will have to remember to tell his urologist.
Tuesday, February 16, 2010
Okay....now who ate my slipper?
Furry things are in danger in this household. I guess that included my sheepskin slippers. After walking across freezing cold floors for 20 minutes I went in search of my missing slipper. There was a telltale tuft of sheepskin hanging out of Sadie's mouth. Yep, right next to her crooked teeth. Is there such a thing as a doggy orthodontist?
When I asked Sadie who ate the missing slipper.....she looked at Benji.
Okay. We often find non-food items in his stool. The list included Battleship "hit" markers, gi joe handguns, twist ties, and of course the infamous pink ribbon. A slipper though? Nope. Turns out Little Miss Sadie was laying on the remnants.
Here I have two boys asking for a guinea pig when I can't even keep a furry slipper safe. I think not!
So after I take my kid to a bar to meet my friend Nancy for lunch, I plan to by some crappy Walmart slippers to replace the really nice leather and sheepskin ones that served as a breakfast buffet for our schitzu. While I'm there maybe a big rawhide chew would be advisable.
When I asked Sadie who ate the missing slipper.....she looked at Benji.
Okay. We often find non-food items in his stool. The list included Battleship "hit" markers, gi joe handguns, twist ties, and of course the infamous pink ribbon. A slipper though? Nope. Turns out Little Miss Sadie was laying on the remnants.
Here I have two boys asking for a guinea pig when I can't even keep a furry slipper safe. I think not!
So after I take my kid to a bar to meet my friend Nancy for lunch, I plan to by some crappy Walmart slippers to replace the really nice leather and sheepskin ones that served as a breakfast buffet for our schitzu. While I'm there maybe a big rawhide chew would be advisable.
Monday, February 15, 2010
SNOW DAY!
It started out as a 2 hr. late start for this morning, announced last night after suppertime. Glenn and I kept it a secret from the boys so we didn't have to let them stay up late. Devious, huh?
I proceeded to get up early in hopes that we could still make it to Benji's appointment today and during my getting dressed/wishing I actually owned a coffeemaker so I could overdose on caffeine stage, I somehow all of a sudden had two boys jumping around me, very excited that school was cancelled. What? Again? My children will be in school until June at this rate. My children have been spoiled by mother nature. So, as I cancelled appointments (yet again), the kids celebrated, the dog pooped on the floor, and Benji woke up screaming that his tummy hurt. What? Again? Will this kid ever be healthy?
So somehow today my list of 10 very important things I needed to do was shortened to:
1. Clean up dog poo because the kids were too busy celebrating their snow day to let him out. Have you ever watched "Martha Speaks" on PBS? I am adding alphabet soup to my grocery list.
2. Clean up kid "yak" of the food he ate last night at dinner time. Why do we even try to get him to eat food? Yes, he ate it at 5 PM and puked it at 9AM the next day. And it still wasn't digested. Can you say "yuk?" (Thanks to fellow IA mom, Mandi, for the word "yak." It is now a regularly used word in my ever-expanding vocubulary of terms to describe kid puke.)
3. Lecture kids that they need to let the dog out when he barks. He has a certain bark that means "let me out in 2 seconds or I am gonna poo on your kitchen rug." I, apparently, am the only person in this house that understands that bark. I bet the rug understands too though.
4. Lecture Benji that when he feels the need to "yak" that there are 7 garbage cans on the main floor of this house. FIND ONE! If one of those doesn't appeal to you, climb the forbidden stairs to your brothers' rooms and yak in their garbage cans. Seriously little boy, the ortho surgeon who said you may never walk and the hand surgeon who said you may never have full use of your thumbs should come watch you get into mischief at our house. Hmph. Use a garbage can kid!
5. Make a list of chores for the kids to do. Being I cleaned up yak and poo all before 9AM- I am done for the day.
Tomorrow better be a new day, with the sun shining, no snow, the car running perfectly, the dog crossing his legs, and my kid puking in a garbage can.
Note to self: IF we actually make it out of the driveway to go see the surgeon tomorrow, try not to use the word "yak." The appropriate word is vomit.
I proceeded to get up early in hopes that we could still make it to Benji's appointment today and during my getting dressed/wishing I actually owned a coffeemaker so I could overdose on caffeine stage, I somehow all of a sudden had two boys jumping around me, very excited that school was cancelled. What? Again? My children will be in school until June at this rate. My children have been spoiled by mother nature. So, as I cancelled appointments (yet again), the kids celebrated, the dog pooped on the floor, and Benji woke up screaming that his tummy hurt. What? Again? Will this kid ever be healthy?
So somehow today my list of 10 very important things I needed to do was shortened to:
1. Clean up dog poo because the kids were too busy celebrating their snow day to let him out. Have you ever watched "Martha Speaks" on PBS? I am adding alphabet soup to my grocery list.
2. Clean up kid "yak" of the food he ate last night at dinner time. Why do we even try to get him to eat food? Yes, he ate it at 5 PM and puked it at 9AM the next day. And it still wasn't digested. Can you say "yuk?" (Thanks to fellow IA mom, Mandi, for the word "yak." It is now a regularly used word in my ever-expanding vocubulary of terms to describe kid puke.)
3. Lecture kids that they need to let the dog out when he barks. He has a certain bark that means "let me out in 2 seconds or I am gonna poo on your kitchen rug." I, apparently, am the only person in this house that understands that bark. I bet the rug understands too though.
4. Lecture Benji that when he feels the need to "yak" that there are 7 garbage cans on the main floor of this house. FIND ONE! If one of those doesn't appeal to you, climb the forbidden stairs to your brothers' rooms and yak in their garbage cans. Seriously little boy, the ortho surgeon who said you may never walk and the hand surgeon who said you may never have full use of your thumbs should come watch you get into mischief at our house. Hmph. Use a garbage can kid!
5. Make a list of chores for the kids to do. Being I cleaned up yak and poo all before 9AM- I am done for the day.
Tomorrow better be a new day, with the sun shining, no snow, the car running perfectly, the dog crossing his legs, and my kid puking in a garbage can.
Note to self: IF we actually make it out of the driveway to go see the surgeon tomorrow, try not to use the word "yak." The appropriate word is vomit.
Sunday, February 14, 2010
A holiday at home
Holidays are outside of the hospital are a rarity for our family so I woke up enthusiastic today about celebrating with some fun activities. Maybe a movie. Or dinner out with the kids, or at least the ones who actually consume food.
Nope.
Mother Nature decided that we would have yet another snow storm of the zero visibility and blowing snow type to help us celebrate Valentines Day. So, we spent the day indoors, watched movies we've seen a million times and relaxed. Glenn ventured out for some groceries and came back proclaiming that highway 50 was terrible. I really needed to take Isaac to buy new shoes. Our shoe shopping last Monday was interuppted by copious amounts of puke. Today I broke down and bought some online. They will be here on Wednesday...if the UPS truck can get into the driveway I guess.
After a week of being cooped up at the hospital I was thinking that I will go insane if it snows any more this week. Sure enough....Mother Nature has more white stuff planned for the week. Along with that I am sure there will be school cancelations, or a delay at a minimum. We are on 7 snow days and counting this year so what's one more, huh?
Nope.
Mother Nature decided that we would have yet another snow storm of the zero visibility and blowing snow type to help us celebrate Valentines Day. So, we spent the day indoors, watched movies we've seen a million times and relaxed. Glenn ventured out for some groceries and came back proclaiming that highway 50 was terrible. I really needed to take Isaac to buy new shoes. Our shoe shopping last Monday was interuppted by copious amounts of puke. Today I broke down and bought some online. They will be here on Wednesday...if the UPS truck can get into the driveway I guess.
After a week of being cooped up at the hospital I was thinking that I will go insane if it snows any more this week. Sure enough....Mother Nature has more white stuff planned for the week. Along with that I am sure there will be school cancelations, or a delay at a minimum. We are on 7 snow days and counting this year so what's one more, huh?
Wednesday, February 10, 2010
A crabby day
To whoever ate my wild rice soup from the family lounge on 3rd floor:
I sure hope you enjoyed my more than adequately labeled soup out of the fridge. Just so you know I had been looking forward to that soup all day because really it was going to be the highlight of my day. Today sucks in general. Having my homemade soup eaten also sucks.
Yes, that was authentic Minnesota Wild Rice. My children and I purchased it together at a road side stand in a town called Rice, MN. And yes, those delicious red and yellow peppers were organic, the chicken farm-raised, and all of it should have been delicious to me at 6PM, but instead I ate chewy chicken and cold curly fries from the hospital cafeteria. Next time you eat my food, please wash the bowl and lid, don't just leave it on the bottom shelf empty. Did you really think I wouldn't notice?
Besides just your obviously inadequate level of consideration for others, I am concerned about you, you Soup Eater. In fact, I am very concerned about you, because as I stirred that soup six days ago I had a very ill toddler on my hip. While he was gulping back vomit, I made soup. I have come to have a sixth sense about when he is going to end up in the hospital and when I know a stay is immenent, I cook. That way my family and I can eat food that does not come labeled with golden arches.
See, I have learned I am immune to his germies. You, Mr. or Mrs. Soup Eater, most likely are not. He is currently suffering from a mysterious bacterial infection "somewhere" in his body, mostly likely in his gi tract. Some of the greatest docs in SD don't really know what is wrong with him. Don't worry too much though as he is slowly getting better with a high level of acute care and IV antibiotics. I'm sure you will too!
When you are done heaving, you can stop by room 3909 and let me know if you liked the peppers. But, oh, you already know which room we are in BECAUSE IT WAS LABELED ON THE LID.
Hope the soup was good! Hope your gut is doing well! :)
I sure hope you enjoyed my more than adequately labeled soup out of the fridge. Just so you know I had been looking forward to that soup all day because really it was going to be the highlight of my day. Today sucks in general. Having my homemade soup eaten also sucks.
Yes, that was authentic Minnesota Wild Rice. My children and I purchased it together at a road side stand in a town called Rice, MN. And yes, those delicious red and yellow peppers were organic, the chicken farm-raised, and all of it should have been delicious to me at 6PM, but instead I ate chewy chicken and cold curly fries from the hospital cafeteria. Next time you eat my food, please wash the bowl and lid, don't just leave it on the bottom shelf empty. Did you really think I wouldn't notice?
Besides just your obviously inadequate level of consideration for others, I am concerned about you, you Soup Eater. In fact, I am very concerned about you, because as I stirred that soup six days ago I had a very ill toddler on my hip. While he was gulping back vomit, I made soup. I have come to have a sixth sense about when he is going to end up in the hospital and when I know a stay is immenent, I cook. That way my family and I can eat food that does not come labeled with golden arches.
See, I have learned I am immune to his germies. You, Mr. or Mrs. Soup Eater, most likely are not. He is currently suffering from a mysterious bacterial infection "somewhere" in his body, mostly likely in his gi tract. Some of the greatest docs in SD don't really know what is wrong with him. Don't worry too much though as he is slowly getting better with a high level of acute care and IV antibiotics. I'm sure you will too!
When you are done heaving, you can stop by room 3909 and let me know if you liked the peppers. But, oh, you already know which room we are in BECAUSE IT WAS LABELED ON THE LID.
Hope the soup was good! Hope your gut is doing well! :)
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