Support thread for parents of sick children

[anchor31]

Hello everyone,

Every parents'' greatest wish is to have a healthy child... But we all know sometimes it doesn''t happen this way. My sweet little Jacob (just 5 months now) is a good-tempered, easy baby and a great sleeper, but he is having recurring health problems and has now been hospitalised 3 times for about a week each times in his short life (first for a bad jaundice, then twice for UTIs). Last week was his third time in the hospital... Tests were run and he has severe kidney reflux on both sides. He will need to be closely monitored by a urologist and rushed to the ER every time he has a fever. Chances are it will resolve itself over time. If not, surgical procedures are usually minor. But until then, he will be constantly on medication and have appointments and tests. The first time he was in the hospital for a UTI was pretty nightmarish because they needed to find out what the infection was and they had to do multiple tests. He reacted badly to morphine and stopped breathing when they did a LP to test for meningitis. This time around wasn''t so bad, but the meds I have to give him now that we''re home are making him nauseous and I have to split his feedings so he doesn''t throw everything up... It''s so draining.

I know some children have worse, sometimes life threatening conditions. I''m not looking to compare notes or anything. I just thought that maybe this could be a good place for parents of sick children to get support, no matter how severe the condition is, or even if it''s a one-time minor illness. Caring for a sick child is emotionally and physically draining, we need all the support we can get!

 

[fieryred33143]

Poor Jacob

I cannot even imagine the pain the poor guy must have been through and how emotionally draining it all was for you

. I''m really keeping my fingers crossed for you and him.

What medication is he on? As you know, Sophia also has kidney reflux. She has been on her medication since April and we have seen a lot of improvement. She is on Sulfamethoxazole. If Jacob is on this as well, you may want to consider requesting a different kind of medication since I know this can cause tummy aches for a lot of children. Mrs.M''s A also has kidney reflux but she is on different medication so there is a variety out there. Sophia tolerates it and over the past few weeks she has grown to like it. I''m hoping Jacob gets better with the medication. It may take a while to figure out what works. We found that we can''t give it to her after a bottle or a meal, otherwise she''ll throw up. We give it to her an hour after dinner and with water.

It is completely draining to give them medicine every night and we have to because otherwise, she gets an immediate fever. There was a week when she was off of it due to the urologist being out of town and not being able to get in to get a refill. She had a fever for three days straight of 102 and the change in her urine was instant. The medicine really does help.

Hope he starts to feel better soon

 

[anchor31]

Thanks fiery. He was on sulfamethoxazole, but obviously the dose was no longer appropriate because he relapsed. He''s on amoxillin now to finish fighting off the current infection and will be on a stronger dose on sulfamethoxazole starting next week. I need to go see the pharmacist today because he said that more than 3-4 diarrhea diapers a day could be worrisome, and he has one at every feeding, so 5 times a day. We need to clear off that infection, but I''d rather not destroy his GI tract in the process, thanks...

 

[mtjoya]

Hey anchor! I am sorry that J is having problems. I am getting teary eyed just reading your post cuz I have been there done that. It''s the worst s**t ever! Excuse my language but it''s so frustrating to have a sicky baby and you can''t do anything but be there for them. Just today J poked her eye and was crying so much and couldn''t open her eye! I was so upset and felt like crying with her. I know it''s something minor but I understand how you feel. J had to go to the hospital for a UTI and it was the worst ever! I was a zombie for those days. I hope that J gets better and you and your family can get thru this! Many hugs!

 

[doodle]

I don''t have kids of my own (well, I claim my stepson, but you know what I mean!), but I just wanted to offer a little encouragement and hugs. You''re a great mom, anchor, so hang in there. Both of my sisters had a lot of medical issues (the older one has CP, and the younger one had a lot of UTIs, etc. as an infant)--at least, on the bright side, if they''re saying he''ll probably outgrow it with time, he won''t remember any of what he''s had to deal with so far, so hopefully things will get better soon. Sorry that things are so difficult for you guys right now, sweetie, and loads of that PS dust for a happy, healthy Jacob!

Fiery, your kid is too ridiculously stinkin'' adorable! Glad to hear she''s doing so much better!

 

[Sha]

So sorry to hear about the kidney issues, anchor.

It must be rough. Whenever Dalila falls I feel awful....I can''t imagine having to deal with medical issues on top of all the other challenges of parenting. Hugs to you and all the other moms going through this.

 

[zoebartlett]

Anchor -- I can''t give you any advice, but I wanted to wish you (and Mrs M. and Fiery) best wishes in helping your little one(s). I lurk on the mommies threads, and I''ve seen pics of how much Jacob (and A and S) is/are growing. They''re adorable, and you are all great mamas! I can only imagine how heartbreaking it is to have a sick child. Just know that you''re doing everything you can and you''ll get through this with the help of family, friends, and medical experts. Thinking of you...

 

[anchor31]

Thank you everyone. I can''t wait for Sunday when we''ll be done with the new meds and back on sulfamethoxazole. Three times a day I have to give him 2oz with his meds, than wait 30 mins+ to give him the rest of his milk... Thank God he''s good tempered! He usually likes to have a regular schedule though so it seems to be confusing him and he''s not sleeping as long as usual at night. That, or maybe I''ll have to start solids soon, he is going to be 6 months old at the end of this month after all!

mtj - Yeah, I remember reading your story with your J''s UTI and I was almost crying because it was so much like my J''s first UTI. I hope it''s not a recurring condition for your little girl! Did they schedule tests to check for reflux?

doodle - I have CP and I can''t imagine how hard it must have been for my parents... I guess it''s payback time! Thanks for your support.

sha - Thank you. That''s something I''ve been trying to work through, the feelings of anger because parenting is hard enough without having to deal with this crap. Hopefully I''ll come to terms with it in time.

zoe - Thank you. I appreciate your support, ever little bit helps.

I haven''t been this tired since he was a newborn...

 

[Tacori E-ring]

Anchor, sorry to hear about Jacob. I hope everything resolves itself quickly. I can only imagine how stressful this is for you and your husband.

 

[Jennifer W]

Anchor, I wanted to post before now but I wasn''t able to. I just wanted to say that your little man is in my prayers and to send you a hug. (I was Mrs Mitchell before, in case you''re wondering who on earth this is...)

As Fiery mentioned, my daughter also has reflux to both kidneys, so I know how stressful and upsetting it is to hear the diagnosis and deal with all the testing. From my own experience, all I can say is that 18 months down the road, we don''t really think about it much and it isn''t having a huge impact on her childhood as we feared it might.

We''re using trimethoprim antibiotic in a single daily dose and so far, it''s been absolutely fine. We have six monthly check up appointments with a specialist and she''ll be re-assessed when she''s three, with the option of minor corrective surgery in mind. Many times though, the reflux corrects itself as the child grows (we''ve been told) so the problem really just goes away. I hope that this is the outcome for Sophia, Jacob and Amelia.

Other than being very vigilant for signs of a UTI (which I believe is more of an issue for girls) I don''t think there''s much else to do, but I did want to let you know that I was thinking about you and that while it''s scary to have a poorly little one, this is very much something that he (and you) can live normally with.

Jen

 

[anchor31]

thank you for your reply, Jenn. It''s very reassuring. Jacob is back on preventative trimetoprim now and it''s not as bad as the infection treatment antibiotics he was taking. I''m getting a bit angry through, because the urologist still hasn''t called and last time it took only two months for Jacob to relapse, so I''m getting a little antsy.

 

[Jennifer W]

Sorry to hear you''re having to wait for news. Maybe call tomorrow? You need to have your mind put at rest. If there was a problem, the call would most likely have been prioritised, so no news is probably good news. Amelia had a couple of break-through infections, but they were much milder than the first time.

Jen