When your kid is going through medical issues...

[Fijimn]

it's just the absolute worst. My daughter was a mico-preemie and we spent 105 days going to the hospital waiting for her to come home. She's been doing great, but she is very small and she has had ongoing kidney issues (kidney stones and excessive calcium in her urine). Her doctor's were treating it as if it was an adverse affect to kidney issues she suffered in the NICU. This summer we had a huge issue with her potassium level dropping really low. At first, the doctors thought it was due to the diuretic she was taking. But now it seems they believe it is a genetic issue. Of course, anything dealing with genes and gene mutations sends you into a tailspin of worry.

Thankfully, insurance approved of the gene study. And her blood is off to the Univ. of Iowa (damn, it kills me when they have to take blood from her, which is almost every other month). The internet research we have done indicates that even if she has this syndrome, that with medicine and healthy living that she will be alright. But it's just tough not to worry about the worst case scenario things.

I guess this weekend we are GO Hawkeyes!

sorry about the emotional dump -

 

[More Kirk Less Spock]

it's just the absolute worst. My daughter was a mico-preemie and we spent 105 days going to the hospital waiting for her to come home. She's been doing great, but she is very small and she has had ongoing kidney issues (kidney stones and excessive calcium in her urine). Her doctor's were treating it as if it was an adverse affect to kidney issues she suffered in the NICU. This summer we had a huge issue with her potassium level dropping really low. At first, the doctors thought it was due to the diuretic she was taking. But now it seems they believe it is a genetic issue. Of course, anything dealing with genes and gene mutations sends you into a tailspin of worry.

Thankfully, insurance approved of the gene study. And her blood is off to the Univ. of Iowa (damn, it kills me when they have to take blood from her, which is almost every other month). The internet research we have done indicates that even if she has this syndrome, that with medicine and healthy living that she will be alright. But it's just tough not to worry about the worst case scenario things.

I guess this weekend we are GO Hawkeyes!

sorry about the emotional dump -

Sounds very hard even with a prognosis that is positive. Hope things get better for you and your family soon.

 

[Lurker1999]

it's just the absolute worst. My daughter was a mico-preemie and we spent 105 days going to the hospital waiting for her to come home. She's been doing great, but she is very small and she has had ongoing kidney issues (kidney stones and excessive calcium in her urine). Her doctor's were treating it as if it was an adverse affect to kidney issues she suffered in the NICU. This summer we had a huge issue with her potassium level dropping really low. At first, the doctors thought it was due to the diuretic she was taking. But now it seems they believe it is a genetic issue. Of course, anything dealing with genes and gene mutations sends you into a tailspin of worry.

Thankfully, insurance approved of the gene study. And her blood is off to the Univ. of Iowa (damn, it kills me when they have to take blood from her, which is almost every other month). The internet research we have done indicates that even if she has this syndrome, that with medicine and healthy living that she will be alright. But it's just tough not to worry about the worst case scenario things.

I guess this weekend we are GO Hawkeyes!

sorry about the emotional dump -

I'm sorry for your situation. I'll pray a Rosary for your family and your daughter's full recovery.

 

[Imtotallynottribe]

it's just the absolute worst. My daughter was a mico-preemie and we spent 105 days going to the hospital waiting for her to come home. She's been doing great, but she is very small and she has had ongoing kidney issues (kidney stones and excessive calcium in her urine). Her doctor's were treating it as if it was an adverse affect to kidney issues she suffered in the NICU. This summer we had a huge issue with her potassium level dropping really low. At first, the doctors thought it was due to the diuretic she was taking. But now it seems they believe it is a genetic issue. Of course, anything dealing with genes and gene mutations sends you into a tailspin of worry.

Thankfully, insurance approved of the gene study. And her blood is off to the Univ. of Iowa (damn, it kills me when they have to take blood from her, which is almost every other month). The internet research we have done indicates that even if she has this syndrome, that with medicine and healthy living that she will be alright. But it's just tough not to worry about the worst case scenario things.

I guess this weekend we are GO Hawkeyes!

sorry about the emotional dump -

Very sorry to hear this. Hopefully you are in store for some good luck down the pipeline.

 

[BelemNole]

It’s the worst. Hope everything turns out well for your family.

 

[Wendy79]

I can assure you her blood will be in good hands.

I'm hoping for answers and good news. This is a bye week, but we'll take the Go Hawks every week.

 

[NoleFan2U]

Good luck with everything. Having a sick child is the absolute worst. Thoughts are with you and your family.

 

[DFSNOLE]

Prayers are with you and your family Fiji. This board can be very cathartic. Let us know how she's doing.

 

[Nole Lou]

Sorry you're going through that. Close buddy of mine has a daughter born with dwarfism, and underwent spinal surgery this morning...she's like 3 years old. So tough.

 

[SoddyNole]

Best of luck and prayers for your family's health Fiji.

 

[Fijimn]

Prayers are with you and your family Fiji. This board can be very cathartic. Let us know how she's doing.

Thank you, everyone. This place was great when Sawyer was in the NICU. She's doing great. Just has kidney stones and nephrocalcinosis (calcification in the meat of the kidneys). So far kidney functions are normal. If we can get the medicine right, we should be good. Part of the syndrome is her small stature....right now she is only 3' 3" and 30.5 lbs. Pretty petite. If we can diagnose her accurately, we can work on the correct type of medicine that allows her kidneys to reabsorb electrolytes instead of urinating it all out.

 

[Nole Lou]

Thank you, everyone. This place was great when Sawyer was in the NICU. She's doing great. Just has kidney stones and nephrocalcinosis (calcification in the meat of the kidneys). So far kidney functions are normal. If we can get the medicine right, we should be good. Part of the syndrome is her small stature....right now she is only 3' 3" and 30.5 lbs. Pretty petite. If we can diagnose her accurately, we can work on the correct type of medicine that allows her kidneys to reabsorb electrolytes instead of urinating it all out.

Good, good, good. You'll get there.

 

[DFSNOLE]

Thank you, everyone. This place was great when Sawyer was in the NICU. She's doing great. Just has kidney stones and nephrocalcinosis (calcification in the meat of the kidneys). So far kidney functions are normal. If we can get the medicine right, we should be good. Part of the syndrome is her small stature....right now she is only 3' 3" and 30.5 lbs. Pretty petite. If we can diagnose her accurately, we can work on the correct type of medicine that allows her kidneys to reabsorb electrolytes instead of urinating it all out.

Thanks for the update. Keep the good news coming.

 

[cmanole]

Good luck Fiji...

 

[Wendy79]

Any update? I was thinking about her this week.

 

[Fijimn]

Any update? I was thinking about her this week.

Nothing for 6-8 weeks but she shows a lot of the clinical signs. Essentially her kidneys are not reabsorb The electrolytes, so her urine is full of calcium, magnesium and potassium. There is medicine that she can take that will hopefully prevent that. But happy to report that she cracked 30 lbs and is in the growth curv (5 percentile) for BMI. If you could have seen her mixing it up with the boys at soccer this morning you would have lol

 

[ericram]

Will continue to hope for the best outcome and for the doctors to do what they do best.

 

[BeccaNole72]

Its always so hard when our kids are sick and you don't know what it is and you can't fix what is ailing them.

I feel for you as I have been dealing with my son having a undiagnosed chronic illness for the last few years and its been specialists after specialists, genetic testing, blood drawn and analyzed hundreds of times and we are still getting anywhere. Just when I think we made a discovery we hit a brick wall. I am now trying to get into the NIH to see if someone else can determine even a temporary Dx because no one down here can figure it out. I am also considering going to Shands as well.

Your daughter is so young and small - I am sure its agonizing since she is so young and tiny.

My son is 16 now and is getting to the point where he is getting just as frustrated as me (and with me because I am constantly taking him to specialists all over and he is getting tired of it). Also at his age his is more in tune as to what is happening and wants to know when someone will finally fix his issue.

I just wanted to let you know that you are not alone. Thoughts and prayers for your daughter.

 

[Fijimn]

Its always so hard when our kids are sick and you don't know what it is and you can't fix what is ailing them.

I feel for you as I have been dealing with my son having a undiagnosed chronic illness for the last few years and its been specialists after specialists, genetic testing, blood drawn and analyzed hundreds of times and we are still getting anywhere. Just when I think we made a discovery we hit a brick wall. I am now trying to get into the NIH to see if someone else can determine even a temporary Dx because no one down here can figure it out. I am also considering going to Shands as well.

Your daughter is so young and small - I am sure its agonizing since she is so young and tiny.

My son is 16 now and is getting to the point where he is getting just as frustrated as me (and with me because I am constantly taking him to specialists all over and he is getting tired of it). Also at his age his is more in tune as to what is happening and wants to know when someone will finally fix his issue.

I just wanted to let you know that you are not alone. Thoughts and prayers for your daughter.

Thank you. I hope you and your son get some answers. Your words are exactly how we feel. She was born at 26 weeks and 1 lb 10 oz, and has been fighting ever since. These kids are really tough.

 

[BeccaNole72]

Thank you. I hope you and your son get some answers. Your words are exactly how we feel. She was born at 26 weeks and 1 lb 10 oz, and has been fighting ever since. These kids are really tough.

She surely is a fighter! I hope you get some answers soon as well. One day at a time...that’s all you can do is take it one day at a time.

I honsestly feel that I could be a geneticist with all of the research I have done. I have my degree from Google.

 

[Urban Cryer]

Sorry to hear you had to go through this! My first son spent a while in the NICU as well, while I knew he’d be okay, it killed me to see tons of other kids in there with pretty significant issues and no presents around. Seriously made me want to adopt. Still thinking about it.

 

[funksouljon]

Sorry to hear you had to go through this! My first son spent a while in the NICU as well, while I knew he’d be okay, it killed me to see tons of other kids in there with pretty significant issues and no presents around. Seriously made me want to adopt. Still thinking about it.

Both of ours were there for a couple days. Mostly due to being early and small and out in a couple days. It is heart breaking to see some of the other little ones in WAY worse shape. And no one able (or willing) to just hold them.

 

[DFSNOLE]

Both of ours were there for a couple days. Mostly due to being early and small and out in a couple days. It is heart breaking to see some of the other little ones in WAY worse shape. And no one able (or willing) to just hold them.

Our sone spent his first several days in the NICU too. He was almost 8 pounds at birth but had a pneumothorax which required a chest tube to allow for his lungs to expand while the hole was healing. My wife and I almost felt guilty with him in there with all the preemies some of whom you could fit in your hand.

 

[Fijimn]

Both of ours were there for a couple days. Mostly due to being early and small and out in a couple days. It is heart breaking to see some of the other little ones in WAY worse shape. And no one able (or willing) to just hold them.

Sawyer spent 105 days in the NICU. First two months in Level 3 - that was the really tough. All the beeps and buzzing sounds triggered my PTSD. When babies are as early as mine was they have no cartilage. Ears are just flaps. They have no nipples and are super hairy. It’s crazy to watch them develop. Their brain is not developed to regulate breathing. They essentially forget to breath. When they do that the alarm goes off and the nurse rubs them to get them to breath. But it also happens when you are holding them. I almost lost it holding her and watching her turn blue because she stopped breathing