Whoa! Jack swallowed at least one piece of steak and one piece of mushroom. He's resorted to feeding the dog but...whoa! Leftovers from Fuji Japanese Steakhouse.
On a (back)side note: we had to give Jack an enema two days in a row. He isn't completely clean but at least he isn't vomiting anymore.
Jack is home. He came home Friday. He lost his IV on Thursday and it wasn't replaced because he was tolerating small amounts of formula. He is only getting half his usual calories but is doing well.
We are also trying to get him to poop. He hasn't gone since Wednesday. If he's backed up and we feed him too fast he might vomit.
Jack is back in the hospital. He hasn't been admit for illness since June 2011after some excessive vomiting post-surgery. Before that, it was December 2010 for excess vomiting/gastroenteritis. This time, it's the flu with complications. We are thankful that he has stayed out for such a long time.
Jack has been battling a cough/cold for about a week. He vomited a large amount of mucus Monday morning and had a fever. We figured it was from his cold. We took him to the doctor to be sure he didn't have a need for medication. She tested him for the flu even though he didn't have any symptoms. She said she's had a ton of kids test positive for Influenza A without flu symptoms. She came in with his results, jaw dropped. He tested positive. The entire family was put on Tamilfu (minus Katie because she's too young). Things started to spiral around 4pm.
First, we found bile in Jack's feeding tube. Then we found some dried blood. He vomited another large amount of mucus around 7pm. And then again. And again. Then he started to vomit bile. He vomited about every 3-5 minutes from then on. I took him to the ER around 10pm when dehydration set in.
He was admitted around 3am after a couple of abdominal x-rays, two separate IV boluses, and two doses of Zofran (anti-nausea med). Dried blood was coming out of his feeding tube and also with his vomit.
He retched until 5:30am when I passed out in the bed in his room. I was back up around 7:30am. He was hot and pale; eyes sunken. We kept his IV fluids going all day. Jason came and relieved me after he took Evie to school. He spent the entire day with Jack and spent the night. I cared for Katie during the day and then picked Evie up from school. Evie picked out two balloons for jack (Elmo and Spongebob) and delivered them right away.
Gatorade was started (half oz) over 30 minutes. It was run every two hours. Jack vomited once. The fluid was upped to an ounce for the night and was run, again, every two hours. Jack did great.
I took Evie to school this morning and then switched places with Jason. We tried an ounce of formula around lunch today. Jack vomited every bit up. We took a break and tried some more Gatorade. He made it to a half ounce and showed signs of future vomit. Of course, I turned it off.
I am about to try some Gatorade again after a four hour break. Prayers that it stays down.
Jack's lips have been swollen. He's drooling like crazy because his throat is raw from vomiting so much.
Here's a pic of Jack trying to feel better. The towel is on his lap to catch drool.
Jack gave me a gift! He recently discovered stickers. This may be the first one he has ever given.
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| Jack's new braces (AFOs-ankle foot orthotics)! He picked the pattern out all by himself! |
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| Jack didn't believe me when I told him he was too big for the baby swing! |
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| He picked the tray off the floor while swinging! |
Changing routine:
Not saying goodnight to EVERYTHING at bedtime.
Not going directly to the couch in the morning.
Not going directly to the couch when he gets off he bus.
Not getting in the van to take Evelyn to school.
Not getting in the van to pick Evelyn up from school.
Not getting what he wants.
What set him off this morning to an almost vomiting episode?
I had a button down shirt to put on Jack. I put it on him like a jacket then proceeded to button it up. I did not pull it over his head. Oh boy was he mad!!!
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| Pershing Early Learning Center 2012 |
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| Syringes for medication. I order these 2-3 times a year because insurance doesn't cover the cost. |
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| Getting ready to make Jack's CoQ10. The liquid version is super expensive and would only last for 2 days each. Insurance doesn't cover this medication because it's OTC. |
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| The finished product. This will last for 12 days. |
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| This cabinet is in Jack's room. It contains his medical binders (his medical records), Early Intervention, preschool, and therapy files (IFSP and IEP), mileage binder (all paperwork for mileage I claim for taking Jack to out of town appointments), and some extra medical supplies. |
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| 60cc syringes, g-tube extensions, and Surgilube for when the g-tube comes out. |
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| The Moog Infinity Enteralite 500ml Feed Bags. We get one box of 30 each month through our DME (durable medical equipment). |
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| That stack of blankets are the hospital blankets we use for when Jack vomits. The blue bins contain diapers, more 60cc syringes, and bags for Jack's never-ending poop! |
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| I had to add this picture because it's so silly! Jack is sitting on a baby doll carseat trying to buckle up. He was saying, "baby carseat. Buckle up." |
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| Gastric Relief System Farrell Bags. We use these bags every night to help Jack's belly. |
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| Medication for a two night's stay out of town. CoQ10 (muscle deficiency), Claritin (snotty nose), Lactulose (poopy problems), Prevacid (reflux), and Cytra-K (kidney chemistry). |
Me: "Jack, time for a bath." (I strip him down to his diaper) "Go to the bathroom for your bath."
Jack: (Only in a diaper, Jack bottom-scoots down the hall and passes by the bathroom. He enters his room and gets a basket of toys. He empties out most toys and pushes the basket to the bathroom.) "Basket bath. Kazoo bath. Barbie bath. Hammer bath."
Jack did an amazing big brother act of kindness! I had turned Katie's swing off so she would wake up to eat. When she woke up she started to fuss and cry a bit. Jack raced over (bottom scooted) to her swing and started to swing it by hand. So special!
I swear the other day he started to sing "Twinkle Twinkle" to her when she was fussing. And...every time we get into the van, as I buckle Jack up, he asks, "baby? Baby Katie? Carseat?"
He is on a topical steroid/antibiotic for his eye. It might be an infection.
Jack got a new backpack for his feeding pump today! I am so excited! Jack...not so much. He is wearing it right now for the first time and has thrown 4 fits so far. We still have 35 more minutes left for his feed! He has only travelled one foot with the backpack on but it's a start. Pumpkin Pack
In other news, I emailed Jack's Ophthalmologist pictures of his eye today. There is some sort of light white spot on Jack's left pupil. It doesn't move. Sort of odd. In the picture you will see a faint white spot in the lower corner of his pupil.
3 weeks of formula for Jackson. this is his new formula. we use 5 containers a day. it's called nestle compleat pediatric and is made from real food. jack has fat on his legs! oh, and check out the pic of his knees! he got himself onto my leg and is kneeling! BIG deal!
Wow have I been busy. Jack's little sister was born 5 weeks ago and it's been nonstop since. Her name is Katelyn Marie and we call her Katie. There should be a pic below. It took Jack 4 weeks to acknowledge her. He says, "nigh nigh," when she cries. He tries to push her off my lap when he wants up.
Jack started preschool last week. He has been riding the bus like a pro! Another pic. His new walker came and
He is on a new formula called nestle compleat pediatric. It's real food in liquid form. He is tolerating it well, through the feeding tube, and has finally been gaining weight. He still vomits often but if he's gaining weight I won't be complaining!
Watch "Jack sings" on YouTube
Jack was able to have his eye surgery on Thursday. We weren't quite sure of it was going to happen because he had been vomiting every morning for 11 days! However, two different doctors cleared him because he didn't have a fever, a runny nose, or flu-like symptoms.
Jason played super dad and took Jack to St. Louis all by himself for surgery. Jack was able to come home the same day. His right eye was adjusted because it has been looking in towards his nose more and more since the eye surgery last year. It is a nice bright shade of red.
We haven't really had much of a set back. We had to take his formula feeds VERY slow. It took three days to get close to our old regimen. Monday will be the first day on our regular schedule.
Now, the reason for the title? Jack fed himself ice cream with a spoon!!!!!!! Sorry if the picture is sideways!
Ok. I have finally come to terms with the fact that jack will not be able to take swimming lessons because he can't do the tasks the class requires.
However, after 10 minutes of horrible, loud, our neighbors probably thought about calling the cops, screaming...jack played in our baby pool for about 3 minutes!
