Mothers of Children with Crohns Community Group
This group is for Moms who have kids with Crohn's disease. Hopefully we can help support each other.
Fever started Monday at 101.1. Then Tuesday mid-day was at 102. By Tuesday night was 103.2. Off to urgent care we go...a couple of hours later we were admitted to the hospital. Wednesday 7am temp was 104.6!!! Yikes!!
A move to ICU, three antibiotics and an anitfungal later...Gus has finally turned the corner and feeling better.
Two words that make a Crohn's mom cringe..."failure to thrive" and "sepsis."
Still trying to determine source. Glad he is doing better.
A move to ICU, three antibiotics and an anitfungal later...Gus has finally turned the corner and feeling better.
Two words that make a Crohn's mom cringe..."failure to thrive" and "sepsis."
Still trying to determine source. Glad he is doing better.
Cultures finally came back and the bacterial culprit is staph...okay, there is a really long name for the exact type, but I'll stick with staph. It's a type we all have on our bodies and noses. Not a big deal, until it gets into the blood stream. I am so going to use this to push for better personal hygiene with my boy!!! You know, it's the little things. Shower (with soap) and shampoo everyday. Brush teeth twice a day. Keep fingernails clean. Etc...
Looks like we will be in the hospital all next week too. He needs a few more days here for the infection. Then will do the scopes on Monday or Tuesday. Then will probably still have surgery on Thursday (as planned).
Back at the ranch... the other kids are all finishing-up their "big" school projects (two biomes and a community helper in a can). That is "mom territory," so my husband will swap with me over the weekend. He'll be at the hospital playing computer games with Gus and I'll be home and up to my elbows in glue with the other kids! LOL At least they will have some good mommy time before I have to be away again.
My goodness--your hands are FULL!!!!! I'm so glad Gus responded to the antiobiotics---104 is a very high temperature! Sigh sigh sigh...it's so difficult to know what to say.... Gus is so very lucky to have a mom (we can't forget your hubby) who is there for him. Being in the hospital must be a drag for Gus, and with the scopes and surgery coming up it's not easy. I told my husband yesterday about Gus and what's going on with him....you are not alone!
Of course your other kids need their mom, too, and with their school projects---you are pulled in all sorts of directions. I hope you are able to take a moment for yourself and just BREATH. You need your inner strength for sure these next 2 weeks. I'll be rooting for you guys :)
On another note---Will's girlfriend (his first) broke it off last week. It's ok...it was sort of a rebound situation and she wanted to be with girlfriends now. I figure he got his first kiss and he won't repeat the record of 10,000 texts he logged last month (she was a real texter!). He's skateboarding again and is waiting for his ankle brace before doing real tricks. My daughter just got initiated into her sorority at UH and celebrated by reactivating her facebook acount. We've been seeing her true college life photos for the first time tonight! Sigh.....she's having fun for sure!!
Hang in there, kiddo. This motherhood is quite a ride, and we want all of you to be safe and sound. Good luck this week and keep us posted!
Prayers,
Kate
It has been an interesting week. Breathing easier, since Gus is doing better. Surgery in about an hour to remove stricture and redo duodenal bypass. Also, checking lympnodes.
On the plus side...Gus was selected as "Hero of the Month" by the kids wish network at our hospital. He was embarrassed and excited at the same time. They gave him a t-shirt, a medal and a $100 gift card to Walmart.
More after surgery...
Tonight not feeling well. Docs are a little concerned, perhaps he caught a virus. Taking every precaution to avoid another episode of septic shock.
I have been able to tend to my other children. My husband and I swap on the weekends. Major Spring school projects were a success. Made it to a wrestling tournament, open house and orchestra performance...and, the biggie, was home for the little one's 7th birthday!
One day...at some distant time in the future...I hope my children will look back on this period and feel loved, and perhaps even realize the great lenghths it took to keep it all together.
Let's hope for a remission for Gus. He needs some normal teenage vibes now---like acting out because he's a teenager, and not because he's feeling awful! I wish we could all wiggle our noses like in Bewitched and just fix everything. I finally donated to the crohns foundation last week...it's about all I can do at the moment.
Will seems to still be in a manageable remission with remicade---he's every 10 weeks now. I don't bug him about how he feels, except I make sure he takes all the daily pills, which he doesn't mind. His nightly butt injection with growth hormone will come to a close this year. He's just shy of 5'6" at the moment (I'm only 4'11"---and 3/4!). Since he just turned 17, there still is a bit of growing time. He now wears an ankle brace when he skateboards. Does Gus like to skate?
Please let us know how everything is going.
Hugs
Bile is pooling in his stomach. It is finding it's way out via the g-tube drain and vomit. It smells soooooo bad! There are moments when I feel like I might just have to join him. The bile is pooling because the intestines and colon have not woken-up from the surgery yet...makes sense because it was a very BIG surgery. Docs think we are in for another three to five days like this. Until everything wakes-up, no food, no liquid, not even sips of water.
Gus is getting bored and is ready to go home. At least I have my weekend trips home to "normal" life, he doesn't even have that. But, he DOES have the better bed to sleep on by far!
My hope is to have him home and ready to go by next Wednesday. His 7th grade class trip is scheduled to leave for San Diego on Thursday and I really want him to go!!! I know, it sounds a bit crazy. He's missed so much school...these social outings are important for him to build relationships with his classmates.
Kate,
We are at Kaiser LAMC (Sunset). The doctors and nurses are wonderful here. Now, if we can just get a new infusion pump for tonight! LOL This one is very sensitive and beeps a lot. Made us both very tired this morning.
I'm so happy to hear Will is doing well with Remicade. How long was he on the growth hormone? We are going to need to see the endrochrinologist again soon too. I think if we are going to do it, the time has come. Gus doesn't need to be six feet tall,but he doesn't need to be barely five feet tall either. He's not going to like getting daily injections though.
Gus hasn't taken-up skate boarding, but he did love skiing this year. Will have to see where his interests go as he gets older and (HOPEFULLY) enters remission!!!!
Thanks. We are fine. My computer tried to drink iced tea, and has been in with the computer doctor. I just received the access passwords from our tech guy to access my e-mails remotely. I'm dying!!!!!
Gus was released from the hospital after 21 days in. He was actually able to attend his class field trip to Sea World three days later! Then we began the make-up work marathon! Did that for a week. He returned to school yesterday. School is out on June 11th. We have a lot to do between now and then.
Last week both the surgeon and GI docs cleared him for food. He was so happy to eat again after five weeks. It's an adjustment though.
Doc wants to go back to g-tube feeds and take him off of the IV TPN. That will take a little time adjusting back to that too.
Our hope is to be back to "normal" by the time school is out in June. Oh, wouldn't that just be wonderful. A nice, simple normal summer!!!!!
Cheryl
Take care---and glad you are back home!