Venting and advice needed

First sorry this will be long and a bit of venting !
about two weeks ago my 15 year old son complained of a pain in his side. After the 3rd day he was still going to school and play practice but since he really isn't a complainer I decided to take him to a clinic. We were thinking maybe a pulled muscle or at absolute worse his appendix.

The dr immediately sent us to Yale pediatric emergency room.( we live in Ct) he was taken right away. No fever. Blood pressure good and only pain if one certain spot was pressed. Dr said probably a muscle strain but to be safe he should have an ultra sound....with in 20 min he spiked a fever to 101 and was shivering uncontrollable.

The ultrasound was terrible. The tech had to press so hard on the spot my son was in so much pain. She then called her boss in..yet more pressing and they find " something" by this time my son holds strong in front of the dr but completely breaks down when they leave. He is scared and in so much pain. The tears and the scare in his eyes was the worst for a mom to see and there was nothing I van do to stop of it. A specialist is called in...more pressing and more pain. A mass is found. It is not his appendix. But they do not know what it is.

I will fast forward to being in the ER for 12 hours and having a CT scan and then he is admitted at 6 in the morning.....this is the first night with out sleep. I stayed with him while my husband went home to sleep and grab a few things,

The surgeon came in and said they had no idea what the mass is and the can not tell if it is I his intestines or stomach. He was so inflamed and his infection was so bad...the two options the surgeon told us Jared, my son, either has Crones or lymphoma. To say I was shocked was an understatement...
Let's forward. 2 more days in the hospital that we believe 50% chance he had cancer and in which I sleep there and do not leave his side. The gastroenterologist looked at the CT scan and simple said I completely disagree w the surgeons and thinks he had a blockage....2 days later he has a colonoscopy and endoscopy ....it was a blockage and Jared is fine!!!! Tears of joy!!!

During this time my husband let me know our best friend who had breast cancer has now spread to her brain and lungs..devastating...

5 days in the hospital and adrenaline keeps me going. I go right back to work and it is beyond busy

If u r still reading here is where I need your help..one night I start having double vision while reading and get very tired. Next day at work in the middle of working on my computer I nod off, sort of felt like sleep but in some ways like fainting. That night I just had pain every where. Yesterday I stayed home due to pain and slept from 10 am on Tuesday to 7 am today. My husband did wake me up to eat.

I woke up today feeling very emotional and so dazed and out of it...this was not due to meds...I didn't go to work again today....

Can this just be everything catching up to me. That I pushed way to hard and my body just shutting down??

The double vision and nodding of! Fainting makes me nervous


Thanks for listening !!!! Sorry so long

Sorry you are going 5hrough so much emotional trauma right now. Try to get a good nights sleep and then see if you think a doctor's appointment would be in order. Grief counseling regarding your friend could be very helpful!

Wow, I'm so sorry you had to go through all of that. I can't imagine the stress. I'm glad your son is okay.

I wouldn't be surprised if your symptoms are due to stress. If it were me, and I didn't have alarming symptoms (chest pain, limb or facial weakness/numbness, slurred speech, etc.) I probably would sleep a lot and wait a few days to see if I rebound. If I was still having issues after a week or two, I would see a doctor. But I would probably give myself some time to recover first.

If the double vision returns, though, it may warrant a call to your doctor. But if it was just while you were reading, I wonder if it was true "double vision" or just your eyes having trouble focusing due to exhaustion.

Joy, I did read your post and commented that we had a very similar few weeks.

I do hope everyone in your family is feeling better.

I also hope you are starting to recover....hopefully with each day your pain subsides....

I'm so glad Jared felt comfortable opening up to you - that's a great testament to you, as his mother.

Hope you can get some rest now.

Debbie

Achey all over: So thankful Jared is doing better, and they found what it was. Whew!!!

As I said in Joy's thread, I can surely relate to "finding" stress in the hospital, when you're with a loved one. Everything is different; it can feel like a type of prison or something, despite the kindness of the nurses, etc.. to make the stay comfortable.

It can be a really emotional experience, and I think it takes a while to get back to "fibro normal" (whatever that may be!). I'm still getting there, and it's been a few weeks, with ups and downs to deal with. It's a real rollercoaster ride. Going to doctor appointments in followup is even stressful, in a way.

I hope you can unwind and enjoy a nice, warm bath and some time just for you. Blessings!

You are all amazing!! Tears of joy I have for all your encouraging comments about Jared!! ( medically and his orientation)

First they are not sure what caused the blockage so he is drinking more water, eating better and taking Miralax everyday.

Jared and I have an extremely close relationship. It was just he and I for many years. Jared is biracial and I always tried to teach him values about being nonjudgmental and accepting people for who they are.. A person is not defined on their color, size or sexual orientation etc.

When Jared opened up to me I was so proud of him that he had the courage and confidence in who he was at such a young age. It means the world to me that he is being true to himself which will bring him happiness and a great life!!!

At the moment I never thought about me as a mom and as my sister said "the gift" I gave Jared..now reflecting and seeing your comments really does make me feel wonderful.

Thank you doesn't express enough how much I appreciate all of you!

P.s. My neurologist wants to see me so I go next week. I went to work today and am feeling better. At the moment very painful but I know it will pass....

Achey all over,
There is a possibility that what is happening to your son is related to what has happened to you! Your history sounds like my family history, and my children were hospitalized also, thank God they never had anything removed, or a complete misdiagnosis like my relatives! The reason they were spared was that I was so ill, and so determined to find the underlying cause, that I found it! Please look into porphyria, it is an autosomal dominant genetic disorder that gets "triggered". My entire family has been "under diagnosed" by symptoms, which was really "misdiagnosed", with many surgeries and medications that either did harm, or at the very best did nothing to really improve the underlying cause. If it really is porphyria, don't remove anything that is under attack. The disorder will just effect another location. In our family areas of attack have included intestines, colon,gall bladder, ovaries, uterus, brain, eyes, ears, throat, esophagus, skin, pancreas, kidney, and liver. I am the only one in the family who has been left in chronic pain (so far), that was after contracting a bad virus and suffering a paralytic event. 50% of all acute porphyria patients suffer from chronic pain. Porphyria is only confirmed by a DNA test, and I am extremely acute, but only have purplish urine when having a severe attack, which is rarely now. My urine does darken when having mild attacks. My whole family had benefited from my correct and complete diagnosis, especially my children, father, and sister. We now know what to do to minimize attacks and their severity, and the proper protocol for hospital personnel who need to be informed before they do something that could do permanent damage, by removing an organ or giving a medication on the "do not take" list. Note, they almost took my daughter's appendix, and did take my father's gall bladder! My poor father still has a hard time accepting that he has had three surgeries for a disorder that would just attack in another direction. Last time it went after my gall bladder (August) I rode it out, not easy, but I knew what was happening, dark urine, heart rate increase, ringing ears, increases over all pain with migraine, and trouble staying conscious...all layered on top.
I wanted to add, if it is porphyria, your family should not be given any of the new class of antibiotics, they work by exploding RNA, and are on the "do not take" they can do permanent neurological damage, to include death for people experiencing acute porphyria. Please consult the American Porphyria Foundation website. There are links to the US, European, and South African drug lists, and medical centers with specialists. My prayers are with you and your family!

Post Edited (Gods love in action) : 3/3/2014 11:14:41 PM (GMT-7)