OMG OMG OMG OMG

Happy three-days-after-Thanksgiving!
Our family traveled up to my home town for Thanksgiving and some family time. Jack did exceptionally well! Evelyn, well. . .she was herself!
Why I'm writing?
JACK IS SITTING UP RIGHT NOW, PLAYING WITH HIS TOYS, AND TURNING HIS BODY IN CIRCLES TO GET TO DIFFERENT TOYS!!!!!!!!!! Is bottom scooting next?

disturbed and progress

I had the most horrible dream Saturday night. It was so horrible, I don't even want to repeat it, but it keeps poking at me, over and over. To share it, without going into details: Jackson's body was left behind and his soul went up to Heaven, but I couldn't get anyone to believe me, and I couldn't get anyone to collect Jackson's body so we could hold a proper funeral. I tried 911, direct ambulance lines, funeral homes. . .  His body just stayed in his carseat in the van. Eyes closed, body lifeless. 4 days passed and nobody would listen to me. I woke up many times during this dream, but it continue throughout the night. I even recall traveling very far to meet with someone who could help me. . .no luck. In the end, I can't seem to forget this dream. It's been digging at me since Sunday morning.
I found out that two CFC children (one 1yr, one 23yrs) are both in the PICU (one recently released) for respiratory illnesses.

On a positive note: This morning I was holding Jackson in my arms in the bathroom, getting ready to brush his teeth. He grabbed the toothbrush and helped me, several times! Jackson was putting the toothbrush in and out of his mouth! He also saw the Pediatrician and did AMAZING. He didn't fuss much and even helped!

Oh, and Jack loves SpongeBob so much! It's so funny! He sees Bob in a store and says, "Bob. Bah. Ma Bob."

Applebee's CFC Fundraiser pic

Finally!

This is Shyanna, a 4 year old with CFC! What a little angel. That's her grandma, Tina. I look horrible in this picture. VERY BAD ANGLE.

kids are just honest, but still. . .

I took the kids to Lutheran Schools Association (LSA) where Evelyn will be attending Kindergarten in the fall. We met the principal and took a tour of the school.

While peeking in one of the Kindergarten classrooms, one of the little boys said, "He has funny eyes."
I should be used to something like this by now, but it made me feel sad. It saddens me that Jack may not be able to attend the same school as his sister, which isn't fair to her. She'll always be separated from him. I truly believe that he will be in a wonderful school system, that will suit his needs, but still. . .you know what I'm saying?

Oh, and Jack had another hard day at school. Found out that he did have some 'moments' when he was pleasant. He also had a lot of fussing. I guess the teachers even turned down the lights to see if it would calm Jack, and it did, to a degree.

Wow! It's only Wednesday night and I am so ready for the weekend! Jackson has been having a VERY difficult week.
Let me backtrack to Saturday morning. I've been waiting for pictures of the event, but. . .I'm. . .still. . .waiting. . .still. . .dum dum dum dum. . .
On Saturday morning, Jason, Evelyn, Jackson, Grandma Barb, Grandpa Steve, and I went to a local fundraiser, in Springfield, for a 4 year old girl with CFC! The flapjack fundraiser was at Applebee's. Oh, and Quinton, Jason's cousin, stopped by as well. Shyanna is a wonderful little 4 year old. She has been placed at the 15 month level, developmental wise. She is a good size, almost the same size as Evelyn, but the differences are obvious when looking at how she acts. We had to keep pulling away items on the table, and taking Shyanna's hands off of Jack's hands (she kept clapping his hands) and Evelyn's hair (she kept petting her hair). Shyanna was lovely and I can't wait to meet her again. It was beautiful to see how well Shyanna was doing. I've now seen CFC kids that are severe and CFC kids that are mild. If only God could give me a hint at Jackson's future.

Back to the rest of the week. Jack had a bad Sunday morning and night (lots of fussing, screaming, crying), a bad Monday morning (we visited the Nutritionist after lunch and that went fine) and night (lots of screaming), a bad Tuesday morning (lots of fussing, screaming, and crying), a bad day at school (he fussed or screaming, didn't tolerate transitions, didn't participate will with the therapies), a bad Tuesday night (lots of screaming). . .this morning was fine until I took Jack to the Cardiologist and we entered the exam room. Jack started to fuss and then cried when the nurse came in to do vitals. Then, of course a lady came in to do an EKG, which was a tragic event, according to Jack. He was screaming and kicking, and it took three people to hold him down!, and then the doctor came in, which also made Jack cry. Oh my gosh. I feel like such a. . .well. . .Jack screams or cries, and after I've attempted all possibilities, if he's still crying, I usually just hold him or let him sit/lay and scream and ignore it...but to nurses, doctors, therapists. . .it's like I get this look. . .as if they are saying to me, "aren't you going to help him? can't you make this stop?"
Sometimes I get the feeling that Jack is a burden to the teachers and students, because he fusses so much, and doesn't move around on the floor, and seems to really need a lot of attention. . .

a 'first'

 

I took the kids to a park today and Jack actually had fun! He enjoyed watching the kids run around and laughed at them. 

CHECK OUT THAT PICTURE!

WOOHOOOOOOOOOOOOOOOOOOOO!

TOTALLY A FIRST!

the 'art of stacking'

Jackson is learning the 'art of stacking' by practicing with Cheez-its! He also put some to his tongue to taste the cheese!

hubba-bubba

hubby- bubby is great. I've discovered that I don't thank him for everything he does. For example: Saturday morning, and Sunday morning, the hubbs got up with Jack. BOY OH BOY was Jack mad that mom wasn't getting him out of bed. The hubby also gave Jack a bath. Jack was peeved!
Anywho. . .thanks!
and. . .Jack went to school this morning. He was fine until we walked into the classroom. The screaming started and didn't stop until the Occupational Therapist carried Jack out of the classroom to 'work'. I left and didn't come back until after I picked Evelyn up from school!!!!
I ran my errands and still had an hour to spare! That was nice!
According to the teachers, Jack did very well. He fussed here and there, and of course got mad when his hand was painted to print out a turkey! He also fussed during snack time when strawberry yogurt was placed on his mouth! Other than that, he worked hard for occupational therapy, developmental therapy, and speech therapy, and truly enjoyed circle time!

home sweet home

I apologize for not posting sooner. Life has been 'interesting'. Jack was discharged from St. Louis Children's Thursday afternoon. We got home around 7pm. He didn't vomit the entire ride home, but didn't sleep either. Jack watched SpongeBob Squarepants the entire ride. Thursday night, once home, was stressful for me. My mom was still here and was a wonderful help. She helped care for Evelyn, Jason, and the house. She stayed all week while I was away at the hospital and kept Evelyn on schedule. She also stayed until Friday afternoon so I could take Evelyn on her fieldtrip. Grandma hung out with Jackson. He didn't vomit!
Everything at home is sort of back on schedule. Jack didn't take a nap Friday or Saturday, even though he was placed in bed! He also hasn't slept very well. Saturday night was very difficult. He kept crying, hysterical, with his eyes closed. I would vent his belly and change his diaper, but he would just continue to cry. We took him out around town Saturday. Jack did very well. Not too fussy. No vomit. He did look sickly, but I think he enjoyed being away.
Jack has been scooting himself around on the floor and playing up a storm. No vomit.
Evelyn has a nasty cough now, but it seems to only happen in the middle of the night, which also keeps me up.
Thanks to everyone for all of the help and support and Jack has not been vomiting!

should have brought my boots

I should have brought my new, hip boots that I purchased about a month ago. Not because it's getting deep in here, but because I need them to give me the strength I need to get things taken care of, the right way, for Jackson.
Jack had a very good day on Wednesday, except for the little fact that he isn't getting close to his required caloric intake per his nutritionist. He sat with me on the bench and played with blocks and read books. Jack even threw his toys and pacifiers and was delighted every time he made a lovely pile on the hospital room floor . He was making sounds and sort-of talking to the television. However, the House Physician, and GI Fellow wanted to send Jack home. I couldn't believe it! I actually lost all control and, from exhaustion and stress, cried terribly while speaking with the two House Physicians. 
It all started when the Social Worker came in to help me find lodging overnight so Jack could make his clinic appointments today! I was like, "Jack's getting discharged? He isn't ready. And I'm not staying overnight in town to make clinic appointments when Jack is so sick. He's been vomiting again. I'll just reschedule! He isn't ready to go home." This is what led to two House Physicians coming into my room, one being very blunt and partially harsh, telling me that Jack will 'spit up' because his mucus is causing his gag reflex to trigger and he isn't truly vomiting. That I should 'expect' him to continue to 'spit-up' for a while more and he can't stay until he's completely healthy. I, of course, while trying to choke back tears of stress and utter frustration, am trying to explain that Jack is special needs, he isn't getting even close to the calories he needs, he's losing some with each vomit, he's obviously having some sort of problem, he isn't spitting-up but actually vomiting, his stomach isn't ready for home, he's been failure to thrive since birth, he needs to be getting close to his caloric intake so I know he'll be on the mend, etc. etc. etc. and they finally said, we'll have the GI Fellow come in and talk to you. I, of course, am so frustrated with the GI Fellow by now, because he doesn't seem to know and understand Jack's history, and keeps shooting out numbers to me ("yah, you're a Dr., now start maturing!"), only want the GI Attending. Thank God, He heard my cries. The GI Attending came in and we had a talk for about 30 minutes.

The GI Attending, who is a colleague of Jack's GI, Dr. Weymann, can clearly see that Jack isn't ready to go home yet. The rate was slowed down (the House Physicians wanted to put Jack up to his normal rate and 'see how he did over the next couple of hours'), an antibiotic was prescribed in case Jack had a sinus infection, and an understanding that "Jack will let us know when he's ready" came out of her mouth. There is also still concern for pneumonia. This Dr. understood Jack's history, that his gut moves slow, he can't handle losing formula too often becuase he'll start to suffer. . .No nausea medication should be given. It may constipate Jack. We DO NOT want that. Continue the feeds even if he vomits.

Fast forward to 11:00pm. Jack has been fussy for about an hour. The Tech is taking his vitals. He is fussing and crying. Next thing we know, Jack vomits a large projectile vomit. I am pleased that someone saw it. It was, indeed, a vomit. A nurse informs me that I am to 'catch' it in a basin next time so it can be measured and the consistency can be seen.

Fast forward to two more instances in the middle of the night. I catch vomit both times and I feel myself hopping up and down with my arms high above my head, so proud of my accomplishment. Both times, Jack was fussing for about an hour, as if his belly was bothering him. 1st time, about an ounce. 2nd time, about an ounce. No mucus. Only formula and very thin.

Fast forward to Thursday morning. Jack wakes up, fussing around 7:30am. "Oh, Jack. Thank you for letting me sleep for 3 hours!" He's moaning and eventually starts to cry. I end up holding him on my lap again. This time, however, he rests his head on my shoulder and cuddles. "Bad sign, Jack doesn't feel well again." I'm sure to tell the House Physician when she comes in (who in turn tells me, "Jack is getting around 66 kilocalories/kilogram, so he's doing very well," and then I'm like, "but that's only half of what he should be getting, which is around 120 kilocalories/kilogram," and she's like, "he should only be getting 80-85 kilocalories/kilogram, 0ver 100 would be for catch-up for a newborn, and I'm like, "his Nutritionist has him on a very strict diet to promote continued growth," and she's like, "oh, his Nutritionist." I ended up laying Jack back in his bed because he was so fussy, and was coughing while I was holding the basin, hoping to make a 'catch'!. Well. . .shortly after, Jack started to blow! I missed the first portion but caught most of the rest. Again, about an ounce. This includes all of his morning meds he was given 20 minutes before.

Jack is now laying in bed, dosing, or just staring off into space, as I await the GI Attending

status update

Sorry I haven't written an update. Time got away from me on Tuesday. Wow! It's Wednesday. On Tuesday I kept thinking that it was Monday!
Today Jackson is 22 months old! Where has time gone?
Most recently, time has been spent in the hospital.
All of Jackson's tests have come back negative. I don't remember if I shared that with you before. I think I did, but I truly don't remember.
Jack has a NASTY cold. Some sort of NASTY virus that it making him all yucky and such. He had a hard day on Tuesday. Lots of fussing. He didn't want me to hold him. He just wanted to lay around in his little bed and watch television or play with the eyes on his wubbanub pacifier froggy. There was one point Tuesday evening when Jack was feeling pretty good. He wanted me to hold him! He sat on my lap on the hospital bench and we read some soft books. He was turning the pages and pointing to the pictures. Then, of course, he started to cough and almost vomited. We vented that belly quickly and took a break from the feeds.
Oh, and I got some respite! A student nurse, Jeff, sat with Jack and I left the hospital. I went out to Walmart and Target and grabbed a small bite at Starbucks.
Tuesday night was bad. Jack was fussy, irritable, and did NOT sleep well. He fussed a lot. This morning I was holding Jack because he was irritable and wanted me. . .and. . .he. . .coughed. . and. . .vomited. His nose has been suctioned. He's been given Mirilax. He finally passed some barium. He is now resting in bed.
I don't' know if we are going home today or tomorrow. I'm in no rush but I do know that I want Jack back to his rate so we know he can tolerate it, and have him acting closer to himself than not.
Time will tell.
I'm bored.

we turned the wrong way

Jack had been doing so well. He had been doing well. He is not doing as well now.

It all started Saturday night. Jack was having a great day. He was having a great night. Then, around 11pm, he started to vomit about every 20 minutes. This continued for 14 hours. We tried turning off his formula, checked his temperature, offered him cuddles, tried some Pedialyte once the bile stopped coming out. Yes, true bile.
I ended up taking Jack into the local ER. Luckily, I had talked with the pediatrician-on-call from Jack's pediatrician's office. She called the ER ahead of time and filled them in on what was going on. We were taken directly back to a room (Oh... me, grandma Barb, and of course Jackson). Jack had blood drawn, which of course was a difficult task (suck a difficult and unfair task). He was poked 4 times for an IV. Three of those veins were blown. We were supposed to get an abdominal x-ray, but the Doctor who took are of us spoke with GI at St. Louis Children's and they wanted Jack with them.

This led to Jack and my first ambulance ride. Not as exciting as one would think, but they did drive very fast! We made it to Children's in what seemed like good time. I had fun watching all of the truck drivers through the back window. They were all talking on cell phones, ear pieces, and one guy was singing up a storm! Jack was on my lap and I was sitting on the bed. He pretty much slept the entire ride, only fussing here and there.

We made it to the ER and Jack was taken directly to a room. The Director of Emergency Medicine was helping take care of Jack. Slightly impressive with that, but also slightly concerned. Was Jack a worrisome case? Why such attention? He was given new lines for his IV, taken back for an immediate abdominal xray, his blood sugar was tested, and his urine was taken by cath. My mother and father-in-law were wonderful and drove down their car and my van with a suitcase. They met me in the ER. We all ate some hospital food for dinner. Thanks for bringing the van guys! And especially for the suitcase! They hung out for a short while and then headed home. Jack was transferred to a room within what seemed like a short amount of time.

We're in our own room, possibly because Jack was not very happy when we were placed with a neighbor. He even woke up the little boy and the boy was like, "will he stop crying soon?". Within 5 minutes on entering that room Jack was quickly moved to his own. We have a nice big space with a comfy sofa bench that I hang out and sleep on. His night went pretty well. He fussed when a nurse came in for vitals or when he rolled. This, of course, woke me up, but I feel rested.

This morning has been very eventful. I met the GI resident and GI attending. Very nice and informative. Jack has already had labs draw, a chest xray, and an upper GI. We're looking at pneumonia (negative), UTI (negative), sign of infection (negative), dehydration (very but given lots of fluids and some bolus through IV), intestinal blockage (waiting for results), possible parasite, possible kidney issue (will be tested if everything else comes back negative).

I'll be sure, at least to try, to keep everyone informed of the results.