Tuesday, August 2, 2011

So tired....

In my quest to find out what is wrong with Joseph it feels like I have taken Joseph to see nearly EVERY specialist in Las Vegas.  I know I have not but it does feel that way...lol.  Here is a sample of the past week or so.

 07/18 - Nothing was on the schedule but I spent the day making calls to various places and tried to wrap up loose ends on the projects I have been working on.

07/19 - Tuesday is therapy day.  Joseph has therapy (OT and PT) from 10a to 12p.  Margaret also get (OT and PT) but today she did not get PT because the therapist had the gumption to get married and be on her honeymoon...lol. So took the children to therapy (all three) and John took Caitlin to the airport so she could head home.

07/20 - Therapy again today.  For all the children.  James get OT and Margaret and Joseph gets Speech. 

07/21 - We got up and went to a WIC appointment.  I HATE dealing with state and federal programs because they are so poorly run but Margaret and Joseph really need the Pedisure 1.5 formula to help them put on weight.  The appointment went pretty well but it still took us 1.5 to get our of there.  Then at 3pm I had to take Joseph to an appointment with Dr. Close (urologist) to have him seen and get instructions before Joseph's surgery.  After the appointment was over I rushed home and had 20m before the babysitter for our once a month respite care came at 5pm.

07/22 - Margaret had an appointment with the eye doctor.  OMG, there was SO much crying and screaming involved with that appointment!  Margaret was very uncooperative but the eye doctor was able to determine that Margaret can see out of one eye with at leas 30/25 vision.  So for now she does not need glasses.  I think in one of Margaret's eye (left maybe) she may have John's weird astigmatism.  Hopefully Margaret will be more cooperative in the future and we can get a better eye prescription in her.  We got there a little before 8am and got out at 11:30am.  By the time I got the children fed I had 30m before my Nevada PEP worker came here. 

07/23 and 07/24 - I spent much of the weekend researching possible in-born errors of metabolism that could explain Joseph's conditions. 

07/25 - Made calls again on Monday.  I am trying to get Joseph into the Hypotonia Center at Johns Hopkins.  It will cost $1500 for me to take him but I think it would be SO important for him to go.  I have to figure out how to raise money to take my little pumpkin.  Then at 2pm my case worker from the Desert Regional Center.  This is the first time we met and we were going to go over the service I might could get for the children.  I cleaned the house and I expected her here at 2pm.  Then 2pm came and went so I called at 2:30p.  I got her and she was thinking her appointment with me was at 3pm.  When she arrives we spent 2 hours talking about the children.  The meeting basically ended by me being told that I would be placed on a waiting list for services and when they were available to me I would be told.

07/26 - Therapy day again.  Left the house at 9:30ish and got back around 12:30.

07/27 - Therapy day again.  Same as above.

07/28 - Luckily John is a teacher and out of school so he was able to help me this day.  John took Joseph to have castings done of his feet for his AFOs (foot braces to support the ankle).   Then  I took Margaret to Dr. Moore to see about getting her a medical diagnosis.  She was diagnosed with autism and hypotonia.  I have to see about her getting diagnosed with PVL and maybe cerebral palsy since she has mixed tone issues.  Then I rushed back home to get John and Joseph and we headed to the endocrinologist.  I wanted John there with me this time.  I was planning too tell the endocrinologist off.  This is the same endocrinologist that would not test Joseph for metabolic disorders and asked me if I was sure I would want to treat Joseph with growth hormone since keeping him small would make it easier for me to take care of him.  After my last visit I went to Yelp! and gave the doctor a review.  I like to do this because I know I would appreciate the information.  I think it is of no surprise when I say I gave him a scathing review.  Well, apparently either he or his staff saw and read my review.  When I got there I have to admit I was taken aback. I never thought he might read it. So he said he knew of the review I wrote and that he did not want it to effect his reputation. He said he would do anything I would like so I told him I wanted to referral to someone who specializes in metabolic and mitochondrial disease. I told him I would have to confer with my insurance and see what I can do about an out-of-network provider. He said that was fine and I told him I would give his office a call back and let him know where we would like to be referred. I also told him I would post about my visit today on Yelp. Nothing like the power of Yelp! :D

07/29 - James' turn to the eye doctor.  More screaming. Sigh, I wish those visits were easier.  We were there for 3.5 hours again but the good news is that James' vision, for now, is fine.  He will most likely need glasses in the future. Then later that day John took Joseph to the lab to get blood drawn for lab work.  The Pulmonologist wanted some blood work completed and I know he is going to check out Joseph's immune system.  

07/30 - Nothing scheduled.  It was a nice break.

07/31 - I took Margaret to the lab to get some blood work done on her.  I got back her MicroArray DNA test and she is completely normal.  Good news.  This blood work was for Dr. Moore and he is check the amino acids and other things for me.  I think he was also checking growth hormone.  If not then I will have to get that done.  At the lab, Quest, I had specifically set up an appointment for a pediatric blood draw since I know Margaret can be hard to draw blood.  I kept asking them about a place where we could lay her down but I was ignored.  I had to restrain her and then they stuck her.  MUCH SCREAMING and kicking later and they were able to draw about 4 vials of blood and we needed 6.  So they stuck her again.  At this point Margaret is hysterical and screaming help me.  They were able to draw about another vial.  Had to stick her AGAIN!  This time in the back of the hand and wiggling the needle around.  Margaret is on overload.  He blood is dripping out drop by drop.  They were talking about sticking her again and I KNEW I was NOT going to let that happen.  Luckily it did not come to that.  They were able to get what we needed THANK GOD!  Poor Margaret left there with three large gauze pads taped to her.  One on each arm and one on the back of her hand.  I felt so guilty I took her to the store and got her a balloon and a ball.  My poor baby!  

08/01 - Surgery day.  John and I were VERY nervous about this.  In light of Joseph possibly having a metabolic issue and the past track record he has had we were scared for him.  We left the house at 5:30am.  Joseph, being Joseph, was in a good mood and not unhappy in the least even though I had not fed him.  We check him in and  sat in the waiting area for a bit.  I went back with Joseph when his name was called.  I told the nurse who we were and why we were there (possible repair of groin hernia and to fix Joseph un-descended testicles along with having a bronchoscopy).  Joseph was a trooper as he continued to be happy and was being so sweet to all the people going by waving at them and haying hi.  The anesthesiologist came in and asked a few questions and I told her I spent a lot of time filling out the questionnaire and she should read it.  That may sound rude but I specifically came in on Friday afternoon to pre-register Joseph for surgery and spent 30m thinking of EVERYTHING I thought would be important for her to know and asking me at 6:30a when I am under stress, nervous and tired was not a good time to ask.  The nurse came back and we put Joseph in a wagon, he had been wanting to get in, and she wheeled him away.  The first part of the surgery was the bronchoscopy.  My poor baby was scoped right down to his lungs.  When he has been getting any respiratory illness his breathing gets bad and he develops this croupy cough (barking-like) with strider (noisy breathing) and you can see him trying to suck in air by watching the depression at the jugular notch.  Then I know it is time to take him to the Urgent Care center where they give my a steroid shot and some breathing treatments.  I thought this was due the scar tissue left from the removal of the subglottal cyst.  As it turns out the area where the subglottal cyst was removed looks great.  Joseph just has narrow airways .  His trachea is soft and rounded when it should be ridged.  This is called tracheomalacia.  Now I would like to determine if Joseph has Type 1 or Type 3.  Type 1 he may outgrow (hummm, may need that growth hormone !!stupid endo!!) and Type 3 would be permanent damage to his trachea from being on the ventilator so long when he was born.  I am not sure how to find out but I will ask the pulmonologist, Dr. Nakamura.  It is important to know because when he gets a respiratory infection he will need to be treated right-away and vigorously.  Then the second part of the surgery started.  Dr. Close, urologist,  looked at the groin hernia repair and she thought that was the reason for Joseph's undescended testicle but it was not.  She was able to pull it down and tie it into place.  Then the floating testicle on the other side (right) was also tied into place.  Then she noticed Joseph has a slight abnormality with his urethra.  It was a little lower than his opening so urination was a little difficult for him so she cut a tiny piece of skin that was in the way off.  She said it should be easier for him to urinate now.  Sadly, I am not sure if that is going to be helpful since he has been diagnosed with incontinence.  In any case it was all done.  When we met Joseph in the recovery area they had only given him some children's acetaminophen for his pain.  It was not enough.  Joseph was crying and whimpering in pain.  Now to put this perspective Joseph broke his right clavicle, significantly, and was still crawling around and did NOT cry!  I had explained this to Dr. Close when she came by and the did nothing for the pain.  Joseph took a long time to wake up and shake off the effects of the anesthesia but luckily Joseph was able to leave the hospital before the next dose of pain medicine was to be given.  I took him home and we had some left over pain medicine from when he broke his clavicle and I gave him that.  He felt much better then.  Our timing for home was perfect because his second dose of pain medicine was due right before bed.  He slept peacefully last night.

Image on bottom left show the trachea and how it is rounded and that is a sign of  tracheomalacia.
Oh, and as a side note. Whatever they used to tape Joseph's eyes shut during surgery left Joseph looking like he has two black eyes.  It looked like we were abusing him. :(

08/02 - Today I have been trying to update my blog.  I also found out a very nice friend of my husband's has agreed to take my children should John and I ever die at the same time.  This is a major accomplishment.  John and I had been debating about this for a long time and I did not know of anyone.  So Trisha, this post is partially for you so you can see the life I live.  It really is a bit more complicated but the love I get back from my children make all the craziness worth wild.  Thank you for agreeing to take the children.  It does take a burden off of mind and the same with John.  

My new class for school has started and I need to work on that.  I am still working on researching what might be wrong with Joseph.  I think I may have an answer.  If so it would be rare metabolic disease.  This just emphasizes to me even more why going to the Hypotonia Center is important.  I have to figure out how to raise $1500 for us to go in the next three months.  I am open to suggestions.  : )    I also got to pick up Joseph's new glasses today.  He looks great in them and I think he even likes them.  It will take a bit for him to adjust.  


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