Update on SS
Ginlyn0
member
Just got home from the hospital. I posted on Monday regarding SS's ER visit https://community.thebump.com/cs/ks/forums/thread/67354773.aspx
Well he didn't make it to Wed's follow up. On Tues, his vomiting worsened and pain worsened and he couldn't keep anything down. The urologist office took forever to call BM back and when they finally did it was 30 minutes until they closed so they had her take him back to the ER. They ended up admitting him and his pain was so bad they put him on morphine. Wednesday morning he finally started keeping fluid down so they were going to release him to eat and his breakfast had just been ordered when the urologist decided to see if they could fit him in to the schedule for his procedure so they stopped allowing food & liquids. Around 3:00 Wed they decided they couldn't get him squeezed in so they released him to a liquid only diet until about midnight last night and then they cut him off of liquids.
He was scheduled for his lithotripsy (procedure where they break up the stones w/ sound waves) at 1:00 but the children's hospital does not have the machine to perform the procedure (I'm guessing because not too many kids get stones?) so he had to be transferred via ambulance to the surgery center where he has had the procedures in the past (usually he gets it done outpatient). However, his transport got delayed -he was supposed to be transported at 11:30 am and we didn't get to the surgery center until 1:00 and then he had to be registered so they let another patient go before him. Finally, he went in about 2:40 and the procedure took about an hour. They then transported him back to the children's hospital once he was out of recovery.
We had to leave to go get DS from daycare and get dinner but BM just messaged us and said that he was finally getting to eat dinner and then he was to be released after.
I'm so glad he's feeling better but I am not looking forward to this bill at all. We didn't realize the children's hospital didn't have the machine since it's one of the best children's hospitals in our state. So we are looking at 2 ER visits, 2 ambulance rides, 3 days in the children's hospital, plus the procedure at the surgery center.
Re: Update on SS
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That poor boy
I feel so bad for him.
Is he on any special diet or supplements to help prevent the stones?
Here is where I will vent about DH's lack of involvement in really communicating with the doctor himself instead of getting info from BM and BM's mixed information she is telling us.
Last time, he and BM were told SS would probably need to see someone (not sure if a nutritionist or what) and that never happened. I don't know why and DH doesn't know why, yet he never questioned BM about it. This time, we didn't see his doctor at all. We were mostly at the hospital in the evenings to relieve BM since BM was there mostly during the day when the Dr was there because she doesn't work and we do and DH doesn't have any paid time off yet at his new job. We both took off today and there for the procedure but his urologist didn't do the procedure today because he was booked all day so his colleague ended up doing it. So we couldn't talk to him.
BM keeps saying he has a "chemical imbalance" and SS needs to avoid salt and that they are being sent to someone to discuss his diet (same as last time). What Dr. Google has told me is that it depends on the type of stone as to what type of food to avoid and I don't see salt as high on the list as other things https://www.mayoclinic.com/health/kidney-stones/ds00282/dsection=causes . The biggest thing is making sure to drink plenty of water. She told us last night "We'll probably be back here in a year or two again" and laughed. I did not find that funny and of course DH said "I thought we were going to be finding out what foods to avoid and that would help prevent" and she was like "Oh, yeah, but he's gonna keep having them forever with the type of food he likes to eat..." MIL & FIL were there and FIL asked her if they said anything about medications and she was like "yeah, but they usually only give those to 70 year old men not 9 year old boys."
However, I over heard her telling her grandfather today when we were all in the waiting room and he asked how they can be prevented and she said "well he can change his diet, but that would be really hard so they are probably going to give him some medicine." DH didn't hear this so I told him on the way home and that he really needed to try to call the urologist's office and talk to him because BM has said 2 different things in the past 24 hours. DH and BM are not good at the medical stuff at all. I would be asking all sorts of questions.
Each time after the procedure they attempt to "catch" the small pieces as they pass through his urine. He has to pee into a funnel shaped filter to try to catch these. We have never been able to catch any pieces that can be analyzed which means either they aren't being caught properly (last time it was during the school year and he had to try to catch it himself during the school day) or the pieces are too small they go through the filter. So as far as I know, they haven't figured out which type he has yet but his stones end up rather large.
The whole situation drives me batty because there is nothing I can do
So sorry you are going through this. I hope they can figure out why he is getting them and either change his diet or get him some meds. Tell your DH to call the doctor directly because he needs to be sure he knows the best way to help SS.
Also, what state are you in? For some reason I remember you being in Texas, is this correct?