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I'm running on fumes right now, so copied from Caring Bridge:
First let me say, HAPPY 13 MONTHS LITTLE MAN!!! Now on to updates and prayer requests. The day started with a dressing change. They noticed the guaze under the tegaderm was a bit bloody so they changed the dressing. The a few hours later it was wet, so they changed the needle. This did the trick, for a while... SHortly before chemo we saw blood in his line. Now, with a continuous IV drip, there is no reason blood should be in his line, especially as far as it was. So they flushed it, and looked at it and it turns out someone somewhere had put a total of 4 extension tubings on his line, plus the filter (for his chemo). There's only supposed to be 1!!! SO the thought was it had to do with the extension tubing. They removed all but 1 and he was doing fine. Then they did his chemo from 4-6. Everythign was working great. After chemo we took him downstairs and outside. We ate dinner outside as a family and it was something I really needed, to eat dinner with all 3 kids and hubby around a table. Thank you Kristen! I really appreciate the wonderful dinner, as does the whole family. And You made my husbands day with his favorite food! While wrapping up dinner Joey's pump started beeping again, took a look at it and it said "occluded patient side" OK, probably just a kink in the line so I started following the line back to his chest and found more extension tubing AGAIN and blood in the line again. My mom cleaned up from dinner and took my big kids home while me and DJ ran Joey back upstairs. They tried to clear his line but there were issues trying to push the fluid and then there were issues getting blood return. The concern became that he had infiltrated again (what happened when he got all puffy the other night). So we had to replace the needle again. 5 nurses and me worked to quickly replace his line, and get blood return but it was a close call. We had to high dose heparin his line so there was something in there, luckily everything with him is fine now, we're just monitoring it closely. In all of this, he now has a rash from the tegaderm. SO we put duo derm on before the tegaderm to hold his port in place (tegaderm is the stuff they use to hold IV's in place, duoderm is like a "false skin" I guess. So far this line is working well and hoping the rash clears up quickly. Poor little guy is just having a rough week. His appetite is down, and he's not eating most solids. He's even dropped down on how many bottles he takes, but we encourage anything he will eat. The nausea seems to be worse about 6 hours after the zofran. ANd its gone for the first 2 hours of getting zofran. He's more sleepy as well. In all the line issues, we recieved a call from my brother in law. My father in law went back to the hospital Thursday. He's currently on a pump to maintain his blood pressure, if they take him off it his blood pressure starts dropping. So he suggested we come out. So after talking to my mom who agreed to take my big kids home and babysit and talking to the nurses, we headed out to Riverside. I guess the plan is to send him home tomorrow with 24 hour hospice care. He wants to be home and after seeing the ICU where he's at I don't blame him! Please pray for him, and the entire family during this time. As for other prayer requests. This morning I was outside speaking with a heartbroken dad from our floor. We always seem to talk when outside because we always run into each other. This morning shortly after he woke up next to his son's bed here, his 16 yr old son opened his eyes looked at him, and earned his angel wings. Dad is heartbroken, but at the same time relieved. Also please pray for Natalie. I met Natalies mom a while ago when Joey was here (before isolation) and me and her hit it off well. She asked to hold Joey and was the first oncology mom to really reach out to us. I have followed her daughter ever since. She was admitted Thursday same as us, and we ran into each other during admitting. Then today I read her care page and learned that Natalie has been moved to ICU because her llungs are filling with fluid. They have started Operation SHOUT OUT to keep Natalie's spirits up. Natalie's care page
I still have to get postcards off to your kids, waiting till we get into town and can find some good ones but hopefully dh can get some tommorow. A mix up with repairs, one of has to stay in and i dont drive.
I was really glad to hear things had been going as wella s could be expected for you. Sorry you now have more problems with FIL being ill and Joey having a hard time eating. Hopefully he'll be home soon and things will pick up there.
Really wish there was more we could do. You seem to be doing so well holding it all together. Hope your bigger children are coping well enough too.
All the best.
I have been reading about Joey and your family for a bit now but I have never extended my words of prayer to you. I am continuing to hold Joey and your family in my thoughts and prayers everyday. Thanks for keeping us updated on your trials.
tears in my eyes again from reading this. Just wanted you to know your family is in my thoughts and I am praying for a speedy recovery for Joey. I pray your family makes it through all this quickly and you get to enjoy many happy sick free days soon.