Well I'm adding a part 2 to this saga,for the simple fact that it never seems to end.I have Ariel doing all the new meds,which with her current ones seems to be a pharmacy full.Trying to push the fluids and all that.
But we still continue to have many bumps in the road.Thursday night she looked awful throwing up and having seizures and even some new weird head seizure thing.The whole week she had been having a lot of wretching.But it was Thursday that she was actually vomiting again.I'm so frustrated with doctors and E.R.'s it's just obnoxious.
I don't understand why they don't get that Ariel is not a typical patient.Anything weird and wacky that can go on usually does with her.Thankfully we will see the Nephrologist and Epileptologist on Tuesday.Hopefully we can all put our heads together and come up with a plan.I hate to pull her Topamax,because it's one of the few meds that works for her,but I also don't want it destroying her kidneys either.It's such a no win situation.Poor Ariel she's so tired of being sick.It's just been awful.
She is tired of going to the E.R. or having to stay home in bed all day because she feels terrible.Please pray for her and pray for wisdom for this situation.
Well friends,things have been so crazy the past couple of weeks.
Ariel has been having so many tummy issues the last couple of years,mainly problems with Irritable Bowel.I have taken her in so many times only to be dismissed or to be told she had things like an ovarian cyst.
When this pain started up I kept thinking it was much the same.Although I do remember a few times of her pointing to pain towards the back.That evening we had all went out to Dairy Queen and were going to go to the movies.We ended up leaving the movie as it was starting,because of people bringing little children and babies and texting all over the place.
That night as she slept she was woken up by pain and started vomiting a lot.Everything I normally do for her I.B.S. wasn't working.So I ended up taking her in.When we got there thankfully she got a wonderful doctor that was very kind.He thought she may have kidney stones,due to the flank pain and the fact that there was blood in her urine.He had her do a CT scan that showed 2 kidney stones and he decided to admit her.
Once there she got I.V. fluids round the clock and an Ultrasound showing two stones one 5mm.We were sent home the next day with pain meds.We were home for about an hour when she realized there was no way she could take being home.We managed to control her pain that night and then ended up going back.She got admitted and once in a room I left to get my things, this lady doctor waited for me to go to my car and then interrogated Ariel on things like doesn't she feel lonely being homeschooled? and does she like her family? And things like that.When I returned Ariel was very upset and so was I.She told me that the gal was even making out like she was faking her pain.I had a good conversation with the nurse and wanted to just be discharged,but knew she was in too much pain to do that.Thankfully the next morning this gals shift was over and she left for the week.The next doctor was wonderful.
Ariel had to have Tordol around the clock for pain.The plan then became to flush the stones out and if that didn't work surgery on Tuesday.So she had numerous bags of I.V.fluids run through her,which was quite annoying at times.
We are thankful for the many friends that sent Ariel cards and for our pastor and his family that came to visit.We also colored pictures,made paper chains and decorated.Ariel's room was wall to wall cards and all the doctors and nurses said it was the cheeriest room on the floor.
By Tuesday we realized they had not flushed out.So she was prepped for surgery.The child life specialist came up and discussed the surgery and what would be done.Ariel told her she was a bit afraid of the mask,but more afraid of getting another I.V. because hers had blown.The last I.V. took them 6 tries to do.So she talked to her that gasing her and putting her under would be better.I had discussed with her about her mental impairment and she said she had called down to the O.R. to discuss it to make sure everyone was on the same plan.
When we got there it was not good The Anesthesiologist started interrogating her and asking her questions she did not understand and then started giving me dirty looks everytime I answered something for her.She insisted on a pregnancy test,though she had,had an un-necessary one two days prior.Then when she told her she wanted to be put out for the I.V. she told her that wasn't necessary because that was for little kids.Well as you can imagine I was in full mama bear mode at this point.
I kept thinking "How dare she talk to my scared child like that."
I talked with the nurse who had me go up to the waiting room after kissing Ariel good by.The head of Anesthesia came up and we had a good discussion.He said her behavior was totally innapropriate and he would deal with it.
He must have because Ariel said when they got to the Operating room this gal was so sweet and nice asking her about her dogs and being really kind,which is the way she should have been in the first place.They did a procedure called Uretoscopy where they take this device with a basket and go up and grab the stones.
When she came out she was looking pretty sore.
The Urologist met with us and said she had 5 kidney stones making a divet in the Ureter and they were all piled up.He said she had more in the kidney,but they were smaller and hopefully would pass.
By the next day she was itching to leave,but she started having spasms and was in a lot of pain.So they gave her more pain meds and something for spasms.They were in no hurry to kick her out.By evening she was better.They had given us about 6 prescriptions jugs for collecting urine and a whole lot of instructions.Anything kidney makes me definately out of my element and so I am having to gain more medical knowledge as this area is so far out from anything I know.
So we packed our numerous bags and left.
We've had some ups and downs since we've been home.
She's had off and on pain and we even ended up back in the E.R. on Sunday.With her having some of the same pain.
So we are now waiting for upcoming appointments with Urology and Nephrology.As of now she is having to drink lots of fluids and be on a low salt diet and lots of new meds,to counteract the Topamax.
Thank you for all your prayers and love and support!
Love the Mama Bear Linn, I can relate to that. NO-ONE messes with my kids. Your daughter is a beautiful spirit and has such strength herself. I know she gets that from her mom.
ReplyDeleteBarb Walton
Even as an adult I hated being treated poorly by staff in a hospital. I am so sad Ariel had that kind of treatment. I'm glad it got better. I truly understand Mama Bear.
ReplyDeleteAriel, I hope your diet and meds will keep your kidneys from creating stones! My youngest sis had them, once while visiting us on an island. She had to fly back to the states in order to have surgery. She now has only one kidney and no longer has stones.
You are a real trooper! You are brave and keep your smile. Get better soon so you and your mom can come north to visit me in Kingston.
Love, Linda
Unfortunately that is what I am seeing more and more of....health care individuals that have the personality and the caring of a rabid dog.
ReplyDeleteI hope that Ariel starts to feel better. Please watch all the pain meds that they are giving her to take. I learned the hard way, that some pain is better than taking everything they were shoving down my throat.
Linn: Sorry you had to deal with some not understanding drs. This was a children's hospital right? Hope things are going better now. Stay home if you can during the storm. Sarah
ReplyDelete