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Old 12-23-2012, 03:12 AM   #1
mekat
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Any one else bummed because of medical issues and Christmas

My son is on pretty shaky ground medically. I can't risk leaving the area because at any minute I might have to take him back to Children's for an inpatient stay. My sister doesn't want to come down to us which means I won't be able to see her or her family because I can't risk taking Alec that far away from his specialists and hospital. I'm turning down family diners with extended family because physically my son can't handle that much activity and any regression right now would land him an inpatient stay.

My mom is not handling the medical stress very well and is freaking out over every little thing. Thankfully my father is a pastor and deals with people in medical crisis a lot so he has been very helpful and not adding to my emotional burden. I am under a great deal of stress and just can not emotionally handle other people freaking out on me. I'm a single Mom so falling apart emotionally isn't an option since I have to be the glue that holds it together for my son and makes it right (or as right as I can). He is hurting physically and needs me to be the one that makes it right for him. Even in pain he is still excited about Santa so hopefully I can keep him home to celebrate Christmas if not then I will have to think of something to make a Christmas hospital stay special.

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Old 12-23-2012, 10:45 AM   #2
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Re: Any one else bummed because of medical issues and Christmas

HUGS! It's a tough time of year to have a sick kiddo. I hope you are able to do something nice for yourself too.
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Old 12-25-2012, 04:25 AM   #3
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Re: Any one else bummed because of medical issues and Christmas

Thanks for the kind words Jennyfa. I had an early wake up call and I was reminded how ungrateful I'm being for all the positives things in my life.

After I was woken up at 3am because of Alec's pump occlusion alarm, I decided to look through my Caring Bridge history of other children's parents I got to know when Alec was a preschooler and had lost touch with over the years. The diagnoses were all very different but they all had one thing in common medical charts thicker then a Webster dictionary and a diagnosis list at least a page long just like Alec. I was shocked to find most of their sites were no longer journals but memorial pages. God bless the families who will be celebrating Christmas this year with one less place setting. I am so incredibly blessed that this mourning I get to hold my son while he discovers what Santa brought him this year.
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Old 12-25-2012, 09:07 PM   #4
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Re: Any one else bummed because of medical issues and Christmas

My thoughts go out to you. We have become so used to our rearranged holidays/life that I sometimes forget that others do things differently or that we used to do things different. Thankfully the last 2 weeks have been hospital free (though I did reschedule some day stay stuff for myself until January, I just wanted a week or 2 with out going to the hospital with someone). With my son's medical problems, he can't eat food or have contact with food so we can't have holiday meals in our home or go to a holiday meal at anyone else's home. We really can't go to other people's homes at all. That's just the tip of the iceberg medical/holiday wise. I'm disabled, my son has the most disabilities but my 3 girls all have a genetic connective tissue/auto immune disorders that causes chronic pain, etc. We have just tried to find ways to make it work for all of us.
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Old 12-25-2012, 09:25 PM   #5
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Re: Any one else bummed because of medical issues and Christmas

Hugs mama. That was us last Christmas. He got to come home on Christmas eve on oxygen and monitors because it was Christmas, but probably should have stayed, and we walked on egg shells. Sadly, Christmas day was DD2's previously scheduled baptism, so I had 14 people staying in our home while DH and I slept on an air mattress in DS's room with his oxygen alarm going off every 15 minutes all night long. We almost told everyone not to come, but to be honest, we needed the help with our 9 month old and 4 year old so I could be at the hospital around the clock. Definitely glad that we are in a much more stable place this Christmas.

Only weirdness today was that DS walked into the kitchen at my moms and started gagging from all the smells of the foods. Luckily, my mom gets it, and just guided him into the dining room, and it got better.

I hope you had a peaceful day, and that your LO gets stronger every day. Good luck!
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Old 12-27-2012, 06:30 PM   #6
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Re: Any one else bummed because of medical issues and Christmas

I'm glad I'm not alone but I am also sorry that others are going through similar or worse. I am getting increasingly worried. He is in a slow but steady decline. I'm not sure we will make his Wednesday scope before I have to take him back to the ER.

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Old 12-27-2012, 09:54 PM   #7
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Re: Any one else bummed because of medical issues and Christmas

Ugh. Is there an option to go in today where it isn't an emergency and get things taken care of before the weekend? So sorry mama. It sucks when you feel helpless.
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Old 12-28-2012, 02:39 PM   #8
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Re: Any one else bummed because of medical issues and Christmas

Quote:
Originally Posted by mekat View Post
I'm glad I'm not alone but I am also sorry that others are going through similar or worse. I am getting increasingly worried. He is in a slow but steady decline. I'm not sure we will make his Wednesday scope before I have to take him back to the ER.
I'm sorry this holiday season has been a rough one for you guys. I hope he makes some improvements soon so that you don't have to go to the ER!
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Old 12-29-2012, 03:57 AM   #9
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Re: Any one else bummed because of medical issues and Christmas

Hug him tight mama...I dont know what his SN are but, that you are the glue that holds it all together says something about it. Is your DS' father not in the pic at all...like can you not expect him to pitch in..at least for the hols. Sorry if it seems like Im poking my nose. Just wanted you to get some respite.
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Old 12-29-2012, 06:09 AM   #10
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Re: Any one else bummed because of medical issues and Christmas

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Originally Posted by luvsviola View Post
Ugh. Is there an option to go in today where it isn't an emergency and get things taken care of before the weekend? So sorry mama. It sucks when you feel helpless.
I suspect his intestines are so compromised by the fistula and inflammation they are dumping, moving the food through too fast for all the nutrients to absorb. The kid has had chronic diarrhea for 2.5 weeks and he has spent his entire life constipated. He is getting the same amount of calories he always does but he acts very weak and his flesh is sunken. He looks like he is starving. Until they can repair the damage I think the only temporary fix is TPN and I am hesitant to do that unless our back is up against the wall. He has had to be TPN dependent before and it damaged his liver after only a few weeks. It took close to 6 months of drugs and monitoring before his liver returned to full functioning.
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