I am still working on a post with the details of Tyler's GI appointment last Tuesday but my brain isn't cooperating enough for me to get it posted tonight (from mental exhaustion or pregnancy brain, I'm not sure which).
For those whose who didn't get the message I posted on facebook, Tyler is going in for his 2nd scope and is getting a g-tube placed this Thursday. I am confident Dr. McOmber and Dr. Graziano (his pediatric surgeon) will take care of our sweet boy. I am not sure my head has fully absorbed the reality of our boy getting a surgically placed feeding tube in his belly in 4 days. Can it be removed when/if things improve? Certainly. The thing that gets me is him having a permanent exterior scar. Somehow it psychologically takes me to a place I hadn't ever anticipated being when we initially received his diagnosis months ago. Truly ignorance is sometimes bliss. Interesting how quickly the human mind can learn/accept new things when your child has a chronic illness don't you think?
Sunday, June 12, 2011
Friday, May 27, 2011
Quick Weight Check / Allergist Visit Update
Tyler had an allergist visit yesterday so I figured I'd kill 2 birds with 1 stone and do a quick weight check at the GI's office since it's less than a mile from the allergist office. (The allergist doesn't have an infant scale and the plop-him-on-the-scale-with-clothes-and-a-diaper weight skews any progress.) The scale read 19 lbs 12.4 ounces, a +7.4 oz gain in one week. Wahoo! To say the ng tube is working is an understatement. Usually Tyler would take a month or two to gain that much weight.
Dr. Shimamoto was pleased with the gain and would like to try apples or pears next week. He is hoping to have Tyler on a couple foods before we do another scope. Originally we had an appointment to see McOmber in July but I got a call from McOmber's office this morning saying they could get us in June 7th. I can't wait to see what the scale says in a week and a half.
Dr. Shimamoto was pleased with the gain and would like to try apples or pears next week. He is hoping to have Tyler on a couple foods before we do another scope. Originally we had an appointment to see McOmber in July but I got a call from McOmber's office this morning saying they could get us in June 7th. I can't wait to see what the scale says in a week and a half.
Friday, May 20, 2011
Tyler's new look
Through the nose, over the ear, then taped to the back.
Placement wasn't a fun thing for me. The nurse has done it for 19 years, only hit the airway once. "Chances of doing that are slim."
She does it perfectly and quickly. Mister C gets it down with no problem. I get halfway and pause because I feel something hard. I freak out and pull it out. The nurse asks if I saw what happened to him. I was so focused on how it "felt" going down I wasn't paying attention to his face. Apparently the nurse and Mister C noticed he started turning a blue-ish color. (I hit his airway.) I had to try it again and now Tyler is beyond pissed. I get it down and he is screaming bloody murder. We are so focused on consoling him we don't notice all the formula in his stomach was emptying on the table behind him.
Mental note: Make sure the end port is closed when inserting.
Here is to hoping he won't pull it out when he's in his crib.
We had to do syringe feedings last night because the pump isn't getting delivered until this afternoon. So far so good.
*Post edit: The tube lasted a little over 48 hours before he yanked it out. His brothers now get to see firsthand how "fun" it is to put a feeding tube in.
Placement wasn't a fun thing for me. The nurse has done it for 19 years, only hit the airway once. "Chances of doing that are slim."
She does it perfectly and quickly. Mister C gets it down with no problem. I get halfway and pause because I feel something hard. I freak out and pull it out. The nurse asks if I saw what happened to him. I was so focused on how it "felt" going down I wasn't paying attention to his face. Apparently the nurse and Mister C noticed he started turning a blue-ish color. (I hit his airway.) I had to try it again and now Tyler is beyond pissed. I get it down and he is screaming bloody murder. We are so focused on consoling him we don't notice all the formula in his stomach was emptying on the table behind him.
Mental note: Make sure the end port is closed when inserting.
Here is to hoping he won't pull it out when he's in his crib.
We had to do syringe feedings last night because the pump isn't getting delivered until this afternoon. So far so good.
*Post edit: The tube lasted a little over 48 hours before he yanked it out. His brothers now get to see firsthand how "fun" it is to put a feeding tube in.
Thursday, May 19, 2011
2 week wait is over
We had our two week weight check last Wednesday. Tyler was +4.5 oz in 2 weeks. Yay!
Around the same time as last week's weight check he decided he isn't as hungry as he ought to be. Yesterday we struggled to get him to drink 12 scoops, not even close to his minimum of 25/day. Went in for a weight check this morning and he was -1 oz from last Wednesday.
And still not hungry.
He is having an NG tube placed this afternoon. Look for a follow-up post later today or tomorrow. Fingers crossed he does well and he starts plumping up.... soon!
Around the same time as last week's weight check he decided he isn't as hungry as he ought to be. Yesterday we struggled to get him to drink 12 scoops, not even close to his minimum of 25/day. Went in for a weight check this morning and he was -1 oz from last Wednesday.
And still not hungry.
He is having an NG tube placed this afternoon. Look for a follow-up post later today or tomorrow. Fingers crossed he does well and he starts plumping up.... soon!
Thursday, April 28, 2011
{Bad words, bad words} + a 2 week wait
{Bad words bad words bad words} seems to be commonplace in my mind lately.
Here is a glimpse of the latest happenings....
Tyler needs to consume 1,000 calories a day. With his current formula concentration he should drink approximately 40 ounces a day. On a good day he drinks 25. Mister C wakes Tyler up during the night to dream feed another 120+ calories (5 ounces) into him. Sometimes he is successful, other times he is not. We compensated for the lack of calories by adding a little bit of oil to his green beans and soy diet. He hates soy. I spent time squeezing edamame out of the pods so they were ready to eat just in case he changed his mind. He hasn't. I cooked up some tofu stir fry drizzled with gluten free soy sauce. He hates tofu.
Now he hates green beans. Judging solely by his behavior, it appears green beans may actually be a trigger food.
So we go back to square one and he is only consuming vanilla Elecare. (Insurance is being a nightmare. That in and of itself can be a post.)
Life is grand. :)
----------------------------------------
We had a weight check with Doctor Laks yesterday. Tyler has lost weight since we saw her at the beginning of April. The current diet should have eliminated his eosinophilic triggers and his appetite should have increased. He should have put on a little weight but he is Tyler.
The GI wants to wait 2 weeks before we place an NG tube. His thinks giving Tyler a full month of "clean" foods will be beneficial, Laks thinks it'd be beneficial for Tyler to gain weight ASAP. She is not as happy with his lack of appetite as we have become. (Have I mentioned I love her?)
So we wait 2 weeks. Fingers crossed he gains weight or there will be two unhappy women (and a father) making some phone calls.
Here is a glimpse of the latest happenings....
Tyler needs to consume 1,000 calories a day. With his current formula concentration he should drink approximately 40 ounces a day. On a good day he drinks 25. Mister C wakes Tyler up during the night to dream feed another 120+ calories (5 ounces) into him. Sometimes he is successful, other times he is not. We compensated for the lack of calories by adding a little bit of oil to his green beans and soy diet. He hates soy. I spent time squeezing edamame out of the pods so they were ready to eat just in case he changed his mind. He hasn't. I cooked up some tofu stir fry drizzled with gluten free soy sauce. He hates tofu.
Now he hates green beans. Judging solely by his behavior, it appears green beans may actually be a trigger food.
So we go back to square one and he is only consuming vanilla Elecare. (Insurance is being a nightmare. That in and of itself can be a post.)
Life is grand. :)
----------------------------------------
We had a weight check with Doctor Laks yesterday. Tyler has lost weight since we saw her at the beginning of April. The current diet should have eliminated his eosinophilic triggers and his appetite should have increased. He should have put on a little weight but he is Tyler.
The GI wants to wait 2 weeks before we place an NG tube. His thinks giving Tyler a full month of "clean" foods will be beneficial, Laks thinks it'd be beneficial for Tyler to gain weight ASAP. She is not as happy with his lack of appetite as we have become. (Have I mentioned I love her?)
So we wait 2 weeks. Fingers crossed he gains weight or there will be two unhappy women (and a father) making some phone calls.
Wednesday, April 13, 2011
Patch Test Results
Tyler was happy today.
Happy because these things
were coming off.The nurse came in to take the patches off. We were disappointed because initially he had more of a rash/reaction to the darn tape than the foods.
She removed the patches then outlined where the foods were and numbered them.
The nurse said Tyler was/is her best patient because usually kids cry and wiggle during this.
We have to watch these circle for 5 days, noting daily changes.Then we waited to see Dr. Shimamoto.
Forget books, the cell phone has buttons I can push.By the time Dr. Shimamoto got to us some of the negative patches turned positive.
The Results...
Safe foods
Egg (doctor isn't 100% certain about this one)
Soy
Green Beans
Could be safe but had irregular reactions
Milk
Peanut
Oat
Corn
Potato
Positive Foods (don't eat)
Wheat
Ham
Pears
Sweet Potatoes
Applesauce
Peaches
Bananas
Uber Positive Foods
Rice (Apparently he can't be as Mexican as we thought. What Mexican eats beans without rice?)
Chicken
Beef
Tyler's diet for the next 6 weeks will consist of Elecare (super expensive formula), green beans, and soy.
Don't be jealous!
Tuesday, April 12, 2011
Scratch Test
We went to the allergist on Monday to get the patch test patches applied. I am an idiot and somehow didn't realize they were going to do the scratch test at Monday's visit and not during the following appointment. Minor detail I suppose.
This is the scratch test.
Stripped down to a diaper, first clue bad things are in the immediate future.
"If I stare them down they won't hurt me." Didn't work but was worth a shot.
They mark his arm.
Then the other arm.
Tiger baby is marked up and ready to go.
18 different food samples + 2 controls
Wait 15 minutes.
Come back to read the results (=see how big the bumps are) and........
Nothing! Absolutely. Nothing. He reacted to the positive control (which he should have) but a big fat negative on everything else.
1 set of RAST results came back. He got a green light to eat quinoa, sweet potatoes, and pinto beans. Daddy is excited Tyler can "be a Mexican." (I am not being racist, I am using my husband's words. If you ask DH what nationality he is, he will tell you he's Mexican.)
We asked the doctor if it is common to have negative scratch results. Unfortunately it can be common. Urgh! The good part is that we don't have to worry about anaphylaxis.
Then they started the Patch Test.
Patch Test = Food stuck on small metal disks and taped to your back for 48 hours.
"Help me, Mom! I've got tape stuck to my back."
By the end......
He was done.
This is the scratch test.
Stripped down to a diaper, first clue bad things are in the immediate future.
"If I stare them down they won't hurt me." Didn't work but was worth a shot.
They mark his arm.
Then the other arm.
Tiger baby is marked up and ready to go.They use a plastic stick with small prongs at the tip (dipped in food) and twist it against the skin. (Apologizes for the sideways video. After waiting 10 minutes for it to upload you are lucky you are still getting a post.)
18 different food samples + 2 controlsWait 15 minutes.
Come back to read the results (=see how big the bumps are) and........
Nothing! Absolutely. Nothing. He reacted to the positive control (which he should have) but a big fat negative on everything else.
1 set of RAST results came back. He got a green light to eat quinoa, sweet potatoes, and pinto beans. Daddy is excited Tyler can "be a Mexican." (I am not being racist, I am using my husband's words. If you ask DH what nationality he is, he will tell you he's Mexican.)
We asked the doctor if it is common to have negative scratch results. Unfortunately it can be common. Urgh! The good part is that we don't have to worry about anaphylaxis.
Then they started the Patch Test.
Patch Test = Food stuck on small metal disks and taped to your back for 48 hours.
"Help me, Mom! I've got tape stuck to my back."Luckily the 48 hours is almost over because the smell isn't so pleasant. Nothing like ham, beef, chicken, wheat, soy, egg, pears, bananas, and 10 other foods taped to your back. Yum yum! :)
By the end......
He was done.
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