IRA NEWS AND NOTES
Ira's Broviac came out today. . . though not under his and/or our terms. The Broviac was infected - think green, puss and swollen - and so it had to come out. That explains why Ira's been a bit cranky as of late. We're glad it came out but sorry that Ira now has to go through yet another round of antibiotics. The antibiotics are being administered through an IV. I won't tell you how many times they stuck Ira to find a workable IV. ARGH! Our poor, little guy can't catch a break.
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Laura and I have decided that Ira will come home when it's time. The rehabs are simply too far away and most of the health care professionals we talk to say that Ira will thrive at home. While the task seems daunting, we can't imagine not having him home with us. Our 850 sq ft apartment sounds very small all of the sudden but we'll make it work. We are determined.
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Speaking of home: Baby Lily went home with her mom last week. Lily is a month older than Ira and has the same condition (CDH). I wrote Lily's mom to ask her how the first night went and this is what Lily's mom wrote back:
my night was the worst... it is so much work taking care of lily.. the six meds she is on, the every three hour tube feeding, not to mention the chest pt, suction, etc... i was a nervous wreck with everything... my whole night was spent staring at her to make sure she was breathing correctly and counting her breaths to make sure she was not tachypnea... oh what a nite.... anyway im better now the nurse will be here soon and i can get some rest... lily is sleeping peacefully... i just over-fed her so i am sure she will be throwing up soon.. this kangaroo pump is nuts. it never alarms when the feeding is over it just keeps feeding her.... Pray for me tonight im gonna need it.
Pray for Lily's mom. I imagine our experience will be very similar.
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My sister, Jackie, left on Saturday. She was tremendous help and Ira took a likin' to her as you can see from the pic below. Click on the picture to go to my flickr.com account to see Sophia helping her brother out with his pacifier.
Enough of the pics already
Originally uploaded by joechays.
Ira's Broviac came out today. . . though not under his and/or our terms. The Broviac was infected - think green, puss and swollen - and so it had to come out. That explains why Ira's been a bit cranky as of late. We're glad it came out but sorry that Ira now has to go through yet another round of antibiotics. The antibiotics are being administered through an IV. I won't tell you how many times they stuck Ira to find a workable IV. ARGH! Our poor, little guy can't catch a break.
-------------------------------
Laura and I have decided that Ira will come home when it's time. The rehabs are simply too far away and most of the health care professionals we talk to say that Ira will thrive at home. While the task seems daunting, we can't imagine not having him home with us. Our 850 sq ft apartment sounds very small all of the sudden but we'll make it work. We are determined.
-------------------------------
Speaking of home: Baby Lily went home with her mom last week. Lily is a month older than Ira and has the same condition (CDH). I wrote Lily's mom to ask her how the first night went and this is what Lily's mom wrote back:
my night was the worst... it is so much work taking care of lily.. the six meds she is on, the every three hour tube feeding, not to mention the chest pt, suction, etc... i was a nervous wreck with everything... my whole night was spent staring at her to make sure she was breathing correctly and counting her breaths to make sure she was not tachypnea... oh what a nite.... anyway im better now the nurse will be here soon and i can get some rest... lily is sleeping peacefully... i just over-fed her so i am sure she will be throwing up soon.. this kangaroo pump is nuts. it never alarms when the feeding is over it just keeps feeding her.... Pray for me tonight im gonna need it.
Pray for Lily's mom. I imagine our experience will be very similar.
-----------------------------------
My sister, Jackie, left on Saturday. She was tremendous help and Ira took a likin' to her as you can see from the pic below. Click on the picture to go to my flickr.com account to see Sophia helping her brother out with his pacifier.
Enough of the pics already
Originally uploaded by joechays.
posted by jch at
10:54 PM
2 Comments:
Joe and Laura-
I shared your family's story about the daily struggle with Ira and having a toddler, as well. I shared it with a young couple (both around 21) at my church that just brought home their daughter. Laci has Down's Syndrome and a hole in her heart. She will have another major surgery when she is six months old. It takes her two hours to feed through a feeding tube, and the process starts over every three hours. Laci, her parents and her big brother (18 mos old) all live in one bedroom in the dad's parents' house. Their lives are greatly frustrated at best, so I shared your story. That Mom was so grateful to hear she is not alone. I'm sorry to say it. I know that is not a service you would provide given the choice, but Allyson was grateful. She liked that she could hear about other young parents who are surviving the situation of everyday hospital trips, babysitting for a toddler, feeding tube and IV nonsense. She knew all the medical words and machines that Ira is using, and that made her feel less alone.
I wanted to thank you for sharing all of these details with us, so I could help out my precious friend this way. It does more than you know to be able to share you with her.
Thanks!
Praying.......
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