Home

If you don't follow me on facebook, I'm sure you're wondering how Jack is doing. I do tend to post quick updates there quite often, but this blog...this blog is my way of getting it all out! I mean ALL. Sometimes I share too much!

I'm happy to say that Jack came home from the hospital on Sunday morning. Saturday night was moving nice and smooth. He actually ended up losing his IV about 30 minutes after his antibiotic was given. The doctors decided to leave it out and see how the feedings went overnight. Thank goodness, everything worked out! We had tons of poop explosions (that's a good thing in Jack's book). He slept well until the nurse took his vitals at 4:15am. Once that happened, Jack was awake. The morning dragged on and on.

Jack is very happy to be home. He's been extremely grumpy but he's eating better than expected. I was able to give Jack 2/3 of his blended food for lunch. This surprised me quite a bit. I'm going to try to feed Jack two more times in hopes of getting all of the calories in. If it doesn't happen, it isn't the end of the world, as long as I can keep Jack hydrated. His belly needs to rest.

I do want to ask for positive thoughts and prayers to other CFC families. We have many sick children right now. As I type this, Jack's CFC sister, Katey, is awaiting a bed for admit because of pneumonia. Jack's CFC brother, Craig, keeps getting an elevated heart rate, low pulse ox, and was discovered to be anemic, again. Stephen is sick with a stomach bug. The lost goes on and on.

CFC Brochure

The updated brochure for CFC Syndrome is out.

http://www.cfcsyndrome.org/pdf/cfcbrochure.pdf

It only gets better from here

Another day is (almost) in the books.

Day three is going as well as expected. 

Jack has been awake all day! He got up in his wheelchair and we took a nice walk in the hallway. We visited the playroom and picked out a toy.

I've been trying to give Jack a bath all day but it has yet to happen. Between scheduled IV meds and feedings, there just hasn't been a chance. Also, whenever I ask the nurse, she acknowledges it but has yet to help me disconnect the IV and help me get Jack in and out of the tub. So... a sponge bath later it will most likely be.

Grandma visited today. Jack enjoyed spending most of the time on her lap!

He has also been playing with the iPad almost all day!

 

I was also delighted that Jack received balloons from his Aide! How thoughtful!

Jack started his formula this morning and has received it two more times. Each feed has gone very well. The hospital staff is confused with our feeding schedule...they are used to bread and butter. Jack is more like bread and mayo with cucumbers! There was talks of Jack being discharged today but at the current volume he is eating, he is getting less than half of his usual daily calorie intake (600). I told the staff that I'd like Jack at at least 1000 calories for a 24 hour period so I know he's getting enough fluids. He usually receives 1400. The last thing we need is Jack getting dehydrated again. If everything works out tonight, I might be able to get Jack's calories up to    1050 by the morning. Then I'll just need his coat and someone to help me get the van to the door to bring him home.

Here's to a smooth night and a trip home tomorrow!

What day is it?

It's time for an update. I'm sure that there are some concerns about Jackson. I am very thankful to have such a great support group. I tend to separate myself from society and Jack has forced me into a situation where I must learn to depend on others. It really does take a village to raise a Jack! We have had amazing support with this recent illness! Thank you!!! Thank you!!!

Jack does have pneumonia and it is being treated. 

Thursday went much smoother than it ever could have. We had some nausea and discomfort. A lot of owies and whys. Jack was vocal and agitated when he was examined or had his blood drawn. However, this is a great improvement from Wednesday. On Wednesday, Jack didn't fuss or move at all for IVs, blood draws, or exams. He was awake most of the night with discomfort. On Thursday night, he only woke up one time although it was for an hour. He was still very uncomfortable but his discomfort was much improved.

Friday has been even better! Jack was awake almost all day! It was nice to see his eyes open instead of rolled back from being so ill. I was able to hold Jack on my lap in a chair a couple of times. We cuddled, watched tv, played games on my phone, and did face time with my mom and Katie. Side note-face time on the iPhone is AWESOME!!! We talked to grandma and Katie throughout the day. Grandma even read Jack a book!

Jack was started on Pedialyte around noon. He only got 1oz over 90 minutes, but it's a start. Plus= the small dose of liquid went well and Jack tolerated two more feeds at a faster rate! I'm so pleased that Jack's belly is cooperating. He's been asking for blender chicken and saying he's hungry all day! He even asked for chips!  Jack wants chips: Jack gets chips! The doctor approved tasting!

I was able to get a nice break from the hospital room this evening. Although we had to tweak our plans bit, I got to go home and eat and shower and then take Evelyn and her friend to a Junie B. Jones musical. You'll know who that is if you've read the books. It felt nice to get some fresh air and be among the world. It was nice to be at home, even if only for a short while, and take a real shower and sit on a couch. I got to hold Katie for a second (that's as long as she'd sit still) and I got some time with super Evie! Thank you, Jason!

One last note, we really do have a wonderful support group! For the first time ever, Jack received Get Well Soon cards and a banner from his classmates and Evelyn's class. He didn't care but it meant the world to me. 

Oh , and I slept six straight hours last night and then another 3! That's a record for me in like forever!!!!!!!

Here We Go 'Round the Mulberry Bush

Well...where do I start...I chose the title of this post based on the fact that Jack is back in the hospital. I could start singing a song using that melody, but it would be very long and very repetitive.

That last part I wrote in the previous post... Yep... That's why we're here. At 3am Wednesday morning Jack started to retch/vomit every 2 minutes. By the morning he was quite weak. We already had a doctor's appointment and I had Katie with me, so I opted to care for Jack at home until he could see his pediatrician. Long story short, Jack retched/vomited bile and dried blood all morning and the doctor planned on doing an IV Bolus (lots of fluids over an hour) but his vein blew on the first try. The local Children's Hospital was called for a direct admit to a bed. There were no rooms available. We drove to the ER (Katie still with me) for a room to get the necessary fluids. Unfortunately, there were no rooms available in the ER for an hour and then once we got back (at this point, Jason had left work and got Evelyn off the bus and came and picked up Katie) it took another hour for xray and labs and assessment before the fluids were started. Jack just kept going downhill until he was severely dehydrated. 

His labs showed a very high white cell count and very low blood sugar. He got a second IV bolus of glucose. He got Zofran (for nausea) through the IV. He was barely awake and extremely weak. However, he was better than I've seen him in the past (gotta try to keep positive). He got a 3rd bolus of general fluids while we waited to find a bed. We were either going to stay locally or be transferred to St. Louis Children's. After a long long wait, a bed was snatched locally and we got a room late last night.

Here's the time frame (this is more for me):

Tuesday 6pm tons of vomit. Lots of mucus. Most likely from cold.

9:15pm tons of vomit. More mucus. Didn't feed anything overnight.

Wednesday 3am retching/vomiting mucus and stomach acid every 2 minutes. Lots of attempts to swallow it back down.

5am still awake with Jack trying to find a way to calm his belly down before he takes a turn for the worse.

7:45am give Zofran tablet to try to calm down belly. It works a little bit. Retching/vomiting spreads out to every 10 minutes. Consistency begins to show bile and dried blood. 

10am contemplating taking Jack to the ER but he has an appointment at 1 that was scheduled for a physical. Have Katie with me. Don't want to bring her to the ER.

12pm kicking myself because Jack is getting worse. Sure do wish I had a babysitter for Katie. Make note to self. Find local babysitter for Katie in near future.

1pm see doctor for Katie's 18month and Jack's physical that changed to sick appointment.

2:30pm attempt to get IV started for bolus fluids. If it doesn't work the first time Jack will be admitted for 23 hour observation. The vein blows and that call is made. End up driving to ER, Katie still being the awesome kid she is! Give her a drink, a snack, and the iPod and she's a happy girl!

3:30pm in the ER. Triage is done right away. No rooms available. 

4:30pm brought back to room. Talk to doctor. He's nervous and uncomfortable with Jack's medical history. I can tell. Nurse wants to take Jack to the potty for urine sample. Uhm...yes. He's 5. No. He wears diapers. Xray comes to get Jack. Assumes he can stand for chest xray. Uhm...he's 5 but he can't stand and even of he could he's way too weak. He can't even sit up. IV eventually put in and on the first time!!!! Blood drawn directly from there! Phew. That saves a step. Bag put over Jack's little winky to collect urine. Zofran given through IV. First bolus of fluids given. After bolus. blood sugar checked. Extremely low. Bolus of glucose given. Talks of admit (duh!) but can't find bed at local children's hospital. Call St. Louis Children's. Begin plans to transfer there. Find out a bed is available but Jack needs to be reassessed first. Might be too ill for local hospital. At this point, I'm like whatever! He's gonna lay and rest wherever he is. He needs fluids and rest. Please just let me now what's going to happen so I can plan. Spikes a fever of 102. Peds Hospitalist comes. Talk for more than 30 minutes. Clouding seen in Jack's right lung. For sure admit here. Needs another bolus of fluids first then up to the room.  Draws more blood from IV before bolus to get blood cultures.

11:45pm finally in the room. Yes. We were in the ER for 8 hours. Doesn't matter where he was as long as he got the fluids and meds he needed. My opinion. Hospitalist tests for flu and schedules another chest xray in the morning. Jack retched/coughed up bile all night, even with zofran. Slept hard this morning.

8am labs drawn from fingers to check electrolytes and probably something else. Jack fought. He's not as sick as last night.

8:30am brought to xray. Jack sat up in the stretcher the entire ride. He sat in a chair for the imagine. By the time we got back on the stretcher he was pooped. 

12:30pm Jack has been resting and sleeping all morning. He coughs a bit every now and then. He vomited bile for the doctor. Good timing. I'm draining his stomach into a special bag so we don't have to pump his stomach. The xray form this morning shows more clouding. 

This means that Jack either aspirated while vomiting/retching/swallowing it back down (yuck!) or has pneumonia. He might have aspiration pneumonia. They aren't for sure yet and radiology hasn't decided or given their report. An antibiotic was started to treat the pneumonia, if that's what it is.

One last thing. In xray, there was a radiology student/nun. She was all in white. The sister looked like an angel. I tear up now and I teared up admiring her. Thank you for the sign. 

Happy Happy (belated) Birthday

Ok. I have to warn you. I started writing this post on January 4th, the day after Jack's 5th birthday. It's already January 21st! Ugh...I'm not going to rewrite the tiny paragraph I started. However, I am going to write in chronological order. Let me rephrase that. I'm going to attempt to write this in chronological order! I am also going to move quickly so I don't get delayed again...apologies ahead of time.

 (This is from 1/4/14)
Wow! Five years old! I tried not to get emotional but I caught myself looking at the clock and remembering the events from six years ago...contractions and bed rest for several weeks and then to the hospital several times for monitoring and then true labor that couldn't be stopped with medication and it was too late to be transferred to a different hospital to deliver and Jack came six weeks early via emergency c-section and then he was flown away to a NICU after I got to touch him briefly.  It all went crazy after that moment.

Happy Birthday!

(Present day!)
Yep! That's all I got done on that day! I just don't get much time to sit and write...
So...Jack is 5! It's crazy to look at him and believe that this tiny little boy will be entering Kindergarten in the fall...Then again...there are days when Jack is ALL BOY and ALL TROUBLE MAKER!

Here goes.

Jack's new wheelchair!
Jack's new wheelchair came the week before his birthday. What perfect timing! We took it for a spin at Menards and Jack was getting into so much trouble! It's only gotten better since the physical therapist has worked with him. He's moving faster. He goes backwards when he wants to go back to something. He's even turned a couple of times! We were at Menards and we were looking at something and I turned to look at Jack and he was two aisles away getting ready to pull stuff off of the shelves! It's like taking a toddler and letting her walk but she keeps getting into trouble!

This was a different shopping trip but we LOVE this picture!!!

I have no words...

The Harlem Globetrotters, made possible by the Starlight Children's Foundation
Through a large donation by Howard Johnson Hotels and the Starlight Children's Foundation, we were able to take Jack and Evelyn to see the Harlem Globetrotters! The game was exciting and Jack had a great time! He attempted to throw different items over the side rail and succeeded with his shoe! We purchased a basketball and were fortunate to be asked to take the court at the end of the game for signatures and pictures! Jack also got to meet a fellow CFC boy, Kyle.

Not quite sure about the game! It's LOUD!

A little more comfortable...

This is Kyle, age 12.

The players signed the ball!

This guy was over 7ft tall!

Waiting to enter the court

The MC gave Jack his wrist band

Other things going on
Jack was having some nasty side effects with the seizure medicine. The way I explained it to the Neurologist: his anger is BOLD and he gets very tired about 3 hours after I give him the Keppra. Jack was also having little seizures more and more as the medicine continued. The doctor decided to switch Jack to a different medication called Trileptal. We weaned Jack off of the Keppra and onto the Trileptal over a week. It's been 2 weeks since the official switch and we've only had one seizure. Here's to hoping for 0! We've also had no side effects. Cross your fingers.

Jack has had a cold since Friday and has vomited twice today. The second time was directly after I started his night feed. A runny nose always upsets his belly. Of course, I'm now on high alert. The last thing I want to do is have to get Jack an admit for IV fluids while his belly rests. No food tonight. No school tomorrow. Luckily, we see the pediatrician in the afternoon. Speaking of, I really like her! I think Jack does as well. He talks about her all the time. Notice how I'm not going to over analyze this illness...