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I wanted to introduce myself, and give a little bit of my story. My name is Valerie, I am 33, married to an AMAZING man, and have two wonderful boys! Isaiah 8, and Devonne who is almost seven.
My youngest Devonne, has Chronic Renal Failure, A non functioning bladder, and a possible Mito. Disorder and or Immune Deficiencies. He spends MORE time in the hospital than he does at home, and is currently inpatient battling a Kidney infection with three very resistant bacteria, and a nasty C-Diff intestinal infection. He also struggles with Gastroparesis, Eczema, GERD, and motility problems.
He cannot urinate so he has an opening into his bladder that drains urine constantly. He also has a Nephrostomy tube into his left kidney that ALSO drains urine. He has undergone over 15 surgeries, and is on 16 medications daily. I would love to connect with other parents who have chronically sick children, who understand the stresses of daily life. I look forward to meeting you all and sharing stories!!!
Welcome, Valerie - I'm glad you've come over ot join us, though I hate to see kiddos having to do so! What a battle Devonne has had, and you along with him.
I'm Kel, married to John and mom to 2 boys, Eric (3.5) and Danny (turning 2 next week). Danny was born with a virus called congenital CMV that left him with low platelet and white blood cell counts, an enlarged liver and spleen, and calcification in his brain. As he grows, the full impact will show itself, and he's currently just flagged as "high risk" for neurological disorders or learning disabilities. He has global mild delays, and is deaf, using cochlear implants to (slowly) learn to listen and talk.
Thank you for the warm welcome!! You guys sure have been through alot too!!! I have heard of CMV, but never really understood exactly what it does!! It is such a hard road to be on when our kids are so young, and go through so much! ( It is especially hard on us Mommies too!! ) Devonne has recently been having problems with his liver too, with enzymes that are really elevated. He had an ultrasound that showed some enlargement but they have never been able to tell us why!! Do you guys see a G.I. doctor for your son? Are his liver issues a result of the CMV? ( Sorry for all the questions, just curious )
I don't mind questions at all Danny's liver issues were definitely CMV related - enlarged liver and spleen are both common markers at birth for CMV, even in less severely symptomatic cases. He did see a GI doctor for a bit, but fortunately, it went back down to typical size after a few months. Danny went through basically an experimental treatment with a drug often used on adult patients with CMV but just beginning to be tried with congenital cases, and one of the benefits of the 4-5 months of treatment was shrinking the enlargement.
That is great that they were able to shrink it down!! We are not sure were Devonne's liver issues are coming from, as his G.I. doctor thinks that it is a result of his many medications, and the fact that he gets MASSIVE kidney infections CONSTANTLY that sometimes spread to his blood stream causing him to become septic. In other words they think that it might just be an inflammatory response versus an actual liver "problem". We don't know for sure, but his specific liver disease tests have all come back normal. ( Thank God ) Having to deal with his kidney failure is enough!!!
I'm glad all the tests come back normal - it really does sound like it might be more of a reaction than a true problem from how you describe it too. Not that there is much way around that - unless there are other meds they can try?
Yeah, unfortunately most of the meds that he is on, are ones that he needs to try to preserve his kidney function for as long as possible. Most of them are metabolized through the liver, therefore making his liver work harder!! I really do feel that we are between a "rock and a hard place" right now, because he obviously needs these meds but at what cost to his other organs???
Hi and welcome to the SN board. I'm Hope. My special needs child is Ava. She has many issues (don't they all?) She's an airway baby, O2 dependant, metabolic disorder, CP, FTT, OSA, GERD, chronic fever disorder, chronic low white counts, hypoglycemia, etc... They're now worried that she may be dumping urine. She was born with many anomalies that suggest genetic issues. She's had 12 or 13 surgeries/procedures, including airway reconstruction last September and foot reconstruction 2 wks ago. It's always something, isn't it?
It's nice to "meet" you!! Wow, you guys DEFINATELY have alot going on!!! It does sound very much like there may be a connection to all of her issues. Have they checked her for Mito. diseases?
Devonne is being checked for those now, because he has more than one organ system involved. They told us that when a child has three or more than they suspect Mito. He has only been home three full weeks since November, because he is always inpatient for these MASSIVE kidney infections and sepsis. It is hard to set up new consultations because they want him to be outpatient and HEALTHY for some of the testing which has been IMPOSSIBLE!!! So frustrating!!