Wednesday, March 20, 2013

A little project we've been working on.




Hello friends,Well we went and had x -rays done today.They didn't see any stones,thankfully,but sometimes x-rays don't show them.Ariel is feeling a tiny bit better today hopefully it stays that way.







I've been working on a little project a page that Ariel and I have been working on called Ariel's memorial tree.







https://www.facebook.com/pages/Ariels-Memorial-tree/523293244380812?sk=messages_inbox#!/pages/Ariels-Memorial-tree/523293244380812?notif_t=page_new_likes




We have a tree in our yard that has the names of kids and adults we've gotten to know through our medical journey.The tree is a pretty pink cherry blossom one and we have pink and blue ribbons on it for girls & gals or boys& guys with the names of the friends we've known who have lost their battle.





We started this tree,because Ariel was having such a hard time dealing with the grief of loss and this was a tangeable way for her to deal with it.We often add ballooons and have some statues in memory of certain kids,like a Hello Kitty for Emily and a frog for Curtis.




Would you please like Ariel's page and if you know anyone who would like to have a ribbon added or a photo please let us know.God bless,Linn

Tuesday, March 19, 2013

Videos of the kids



Here are some videos I've done of the kids over the years,just thought I'd share.


Ariel's life story





Part 2:




For Ariel




Daniel's story





All three kids through good and bad times.





Make a Wish trips













Monday, March 18, 2013

Blog changes




Hello friends,due to some recent unpleasant circumstances,finger pointing and all the fiery darts thrown my way.
I am going to be making some changes on my blog.


I am tired of all the armchair physicians who don't know diddily squat about my daughter and what's going on with her telling me what to do or not do.And I'm not talking people who offer friendly, helpful medical advice.I welcome that.There are people who just don't get it.So I'm going to lay it out.A couple of my kids have life threatening medical conditions.You can live in denial and say it isn't so,but the facts are the facts.That's why they got Make a Wish trips.The doctor had to sign papers saying this is a life threatening disorder.They have an unknown and hopefully someday known genetic syndrome that all the specialists agree is progressive.I have endured so much pain and hurt recently by some of the people who you would think would care about you the most, that I'm going to be very cautious in what I put out there anymore.



I will be using this blog for mainly fun times,recipes,Bible verses things like that.I am going to try and avoid talking anything medical on this site.I wanted to change it to private,but with blogger you can only have like 80 readers,so that doesn't really work.If you would like more info about what's going with Ariel in the medical sense you can either friend me on FB or send me a request on Caringbridge.

http://www.caringbridge.org/visit/arielmarrero






Sad that I feel the need to do this,but I don't know what else to do other than privatize.Thank you all for your understanding.Linn

Saturday, March 16, 2013

More procedures for the Princess.

Or the lost month part 3,but now I think it's going on the lost month and a half.We were finally getting settled into our routine.When we went to see Ariel's Internal medicine doctor he felt that an NJ should only be temporary and was talking about her getting a J-tube for feeds.Saying it would be more comfortable and it could have duel purposes one for feeds and another for meds,especially when she is in a bad seizure state.Well we got the approval right away and they called on Monday and were like we can do this tomorrow.Yikes!


So we got everything all ready and checked in at St.Joes.This is the fourth hospital we've been to in a month.We did the usual labs and registration and then went into the waiting area waiting for them to bring her back.



This is one of the problems I have with adult hospitals,they always try to separate me from her.When I came in I told them of her impairment and that wasn't going to happen.They finally took her back to the final holding room and the doctor comes in and proceeds to tell me they were going to do this under conscious sedation.Even the name sounds like an oxymoron.Umm no you are not you're putting her out or this isn't happening.

Thankfully the doctor was nice and said he would just have to call for the Anesthesiologist.


They finally came and took her to surgery.She was in surgery for an hour and recovery for another hour and a half.When we went upstairs to her room I immediately noticed it did not have a bathroom or shower and that you had to go down the hall to the community bathroom.So nice for someone with their stomach cut.


When Ariel came out she was moaning loudly and coughing a lot.I really had no idea the extensiveness of the G/J tube.I am used to friends with kids with Mickey buttons and how they've told me it was a piece of cake.This was anything but.



Poor Ariel had been in so much pain and hurting so badly.At first the doctor came in and was really nice and they will do anything she needs to make her comfortable and everything.The next day her attitude changed.She was acting like this procedure was nothing more than having an Endoscopy with a biopsy.The Interventional Radioliologist told me this was like having a bullet go through your intestines and stomach.

I told her my daughter was no way going home until her pain was better controlled.She was like "I'm not going to fight you on that."And proceeded to tell me how this is usually an outpatient surgery.Well for one Ariel is not the typical patient.And two on their board it says above all the faces of pain, control is our top priority.Oh,really?




By the evening I was one hot mama as my daughter is screaming in pain and basically being blown off.She had already started decreasing her pain meds.For goodness sakes she just had surgery.I get so tired of this everyone is going to be an addict mentality that they make people needlessly suffer.Especially a mentally impaired girl.At that point I had ,had it and started making phone calls and emails.I told them "If my daughter goes into crisis because of this you will be sorry." Sure enough by morning she started having convulsive seizures like crazy.



They had to bring in the oxygen and suction equipment and I.V. ativan.I told them "See I told you this would happen if you didn't get her pain under control.Now do you believe me?"


They were all scrambling paging the doctor over and over she wouldn't respond.Finally like an hour later she comes up Ariel had been off and on clustering the whole time.When she saw her actively seizing she was like "Does she need something more for pain?" Then was all being miss sweetie pie and rubbing Ariel's leg and going on and on about how beautiful she is.



I told her we wanted out of there we wanted to go home,but want her pain controlled so she can be comfortable at home.Finally she gave us enough things to give her some pain control.We got home at 8:00pm that night.Since being home she is still having pain,but it is a bit more controlled.The main thing is trying to keep her down.She wants to walk around a lot,but that brings pain and that brings seizures,so it's quite a balancing act.



We have an appointment on Monday with the Internal medicine doctor.So far using the tube is easy she is getting her meds and feeds as needed.It's clogged a couple of times,but the nurses have shown me how to use Sprite to unclog it.
Please continue to pray for Ariel.This has been six weeks of sheer mysery and I'm so tired of seeing her suffer and in pain and miserable.




I just want her better and to be able to do the things she was doing before.Thank you for your prayers.







Saturday, March 9, 2013

The lost month part 2




As I said in my previous post we had a fun time at Petco and Walmart shopping and it was just fun to have a day out to do something fun,so the day was going well and I was just so happy to be home,unfortunately that was short lived.In my slumber I heard voices coming from the front room.It was 4:30 in the morning.Ariel was on the couch shaking like a leaf and she felt really hot to the touch.Her heart also looked like it was beating out of her chest.I was wondering where I should take her and she was terrified and was afraid for herself and finally asked us to call an ambulance.I'm so glad we did.





When they got here they had a hard time getting a heart rate.because it was so high.She had a 103 temperature and with her having a PICC line I knew that must not be good.We live 12 minutes from this particular hospital,but normally can't stay there,because of insurance issues.We had one of our favorite E.R. doctors.He did blood and the guy came to do a temp.He used one of those head ones that you roll across.He just swiped it really fast and her temp read 99.The nurse I had the day before had a discussion with me on those and the ear thermometers.She said people get lazy and don't keep the head ones there long enough and you are supposed to roll the from forehead to ear and back again.I made them do an oral one 102.8.After that I told them they will only use orals on Ariel.Can you imagine if they would have took that 99 as her temp.They could have blown off any infection.





They started giving her I.V. fluids and the doctor came back and told me her white count was pretty elevated and something else I can't remember was elevated a sure sign of Sepsis.He told me they would be admitting her.The also did blood cultures.Poor Ariel she was not only incredibly sick ,but so upset to be back in the hospital again.They started giving her I.V. antibiotics,three different ones.She didn't look very well.We were also still having the problem with her vomiting and being incredibly nauseous.




The entire almost two weeks we were in this hospital they were constantly going back and forth on whether she was in sepsis or there was contamination.I kept telling them I know she didn't have a 103 fever for nothing.Also the shakes she was having were really bad.My heart was just breaking for my girl not to mention Sepsis is life threatening.It was so scary wondering what in the world was going on,not to mention the constantly changing doctors made me crazy.The first doctor I could barely understand a word he said,but he seemed nice,didn't bug me and did whatever I asked.The next doctor was pretty nice as well and seemed to go the extra distance in answering any questions I had.The third I didn't care for as much.He seemed to have a very Jekyl and Hyde personality.One day he would be sweet as pie and the next day he would be nasty as could be.He and I went the rounds a few times.One day they were pulling her antibiotics and the next they were adding them.


I spent several days coloring pictures and cutting out construction paper hearts to decorate her walls.This is something I always do when Ariel is admitted.It's hard being a mentally impaired child and having to go to adult hospitals.This hospital was great in many ways,like being only 12 minutes from our house,nurses that actually let you sleep at night,plus a beautiful facility that looks more like a resort than a hospital,


but not so great in other ways,like being made to feel like you're a criminal just for going to the gift shop.That was one thing we ended up talking to the charge nurse,social worker and doctor about.There were all these rules and if you dared break one they would jump down your throat,but half the time they wouldn't tell you what they were.


For example at this hospital you are not allowed to leave the floor and can barely walk anywhere.At Overlake they made you walk and you could walk through the entire hospital and go outside.The security guard here made Ariel put down a panda bear she was hugging and escorted us to her room and was being ridiculous.Acting like she was going to go outside and shoot up or something.You would have thought we were getting busted for shoplifting and I was one hot mama.Ariel was in tears and crying.

                      I ended up buying her the Panda bear the next day,I felt so bad for her.

They also had a fit if I dared touch anything on her tray,even though several of the nurses asked me if I wanted anything before they got rid of it.I would order her an abundance of food and she would maybe eat a little bit of fruit.I always would tell the nurses exactly what she ate,but I got totally chewed out by the doctor for eating off her tray,well it's expensive being at the hospital and they would rather throw away a tray full of food,then to let me have it.I really think what happened was that certain nurses were lazy and wouldn't write it down,even though I told them exactly what was on there and then when the doctor asked they would blame me.


I also got chewed out because one night when I was sleeping Ariel threw up and flushed it,because they have to see it.I was also accused of dumping her urine they were collecting.I did dump it once,because it was overflowing, and the nurse was not doing her job and Ariel needed to use the restroom,but I did tell them exactly what it was up to.




I had finally had enough and at first my husband had a meeting with the charge nurse ,doctor and social worker and the following day I had a meeting with the charge nurse.At first when I went to the front desk to ask about seeing her the gal was like"What for,Why do you want to see her?"  None of your business I thought. I ended up speaking with her she was really nice and said that certain nurses were not doing their jobs right and should not be blaming me for them.She also didn't understand what the big deal was with the tray.And that if they expect us to go by certain rules they need to tell us what those rules are.What am I going to lie about what she ate? Why would I, What purpose would it serve me? So after that things were much better.Most of the nurses were really nice,but there were a couple I didn't care for,mainly it was in the way they treated Ariel.The G.I. doctor came down several times.She told me "We believe she has Gastroparesis.Why she has this or what caused it we don't know."So the solution for us finally being able to get out of the hospital was to give Ariel an NJ tube.




I will tell you that was the most miserable torturous experience ever.The nurse we had that did it was not one of my favorites.She was very cold and unfriendly and she seemed really rough about it.She jammed it down at first and here they don't numb you or do anything like sedate you.We waited forever for x-rays to confirm it was in the right place.It wasn't it was looped up in her Esophagus.Then she said I need to pull it out and then push it down.Which she did.Ariel was so upset and crying.When it was done the guidewire came out on the bathroom floor and along with it was all this blood and snot.I freaked out and so did Ariel.I buzzed for this gal who was like it's no big deal.Then finally they did a second x-ray again it was in the wrong place.Later they had an ICU nurse come in.I was furious by this point at what they had put Ariel through.



The ICU nurse was very nice and she was none too happy either and said obviously that gal had forced it too hard to make her bleed like that.She tried to push the tube down further,but without the guide wire couldn't get it in her Duodenum.It just looped and looped.So she had to pull it completely out and do it again with another.Thankfully she was gentle and changed nostrils and got it down quickly.Poor Ariel was just a wreck at this point.But thankfully it was in and in the right place.One thing I didn't like though is these sticky pads they stick on the nose to keep the tube in place.It covers the whole nose and clips with the tube hanging in the front as pictured above.It's bad enough having an NJ tube,but do they have to make you look as freakish as possible? Thankfully my friend Wendy who's daughter used to have one told me to use Tagaderm instead and I did and Ariel looked so much better.



We started this whole thing at like 2 in the afternoon it was 3am before she actually got feeds.The x-ray technician was really kind.She knows us well from years of going to the E.R. with Daniel's dislocated shoulder.I told her some of what had gone on and she was disgusted.She told me "It's families like yours that are nice ones that we want here." It's so ridiculous they treat so many people there like they are druggies. In Gig Harbor,really? I seriously doubt there is much of a problem with that here.Ariel was so stressed from it all she started having seizures that night.Her convulsive seizures had been so much better since her VNS,but since she got sick she had,had several at Harrison and at St.Anthony's.Thankfully when she had them we had one of our favorite nurses.One that was kind and gentle,probably,because she also had a special needs daughter.




They started Ariel's feeds at 10ml,which she did okay with,but once they moved her to 20 she was puking and wretching.It took two days to get there.The doctor finally came in and said sure enough her PICC line had staph growing in it and so they were removing it.Then had to do another I.V. thankfully they got it in quickly.We ended up staying at this hospital for almost two weeks.The entire month of February was spent inpatient at one facility or another.




Ariel was finally able to get up to 30ml per hour before we left.





Another bright spot was that many of you were very kind and sent Ariel e-cards or visited with gifts or flowers.Our church family was such a blessing bringing meals to the boys and sending cards and visiting.Ariel's daddy and brothers were there almost daily.




Jaime from Quilts of hope sent Ariel this amazing quilt with encouraging words on it from friends.Just so you all know I don't go to these places looking to fight and argue with people.I wish I never had issues and things were smooth sailing the whole time,but I want my daughter to get the best care possible,and when they start treating her poorly I will not stand for it and make my voice heard.


We finally were able to come home with enough meds to fill a pharmacy and tons of equipment,but we were home and Ariel and I were so thrilled.Ariel was so happy to be home with her puppies again.





Wednesday we went to see her Internal medicine doctor.He felt so bad that she went into Sepsis,since he was the one that ordered the PICC line.He wants to do further testing for the Gastroparesis and gave me this large binder with all sorts of info.I guess Ariel's been put into a program for people that are frequent flyers and high risk for going back into the hospital.After the appointment I took her to the mall and she got to do a Build A Bear.I think she realized though how much the Sepsis and the Gastroparesis has taken a toll on her body.she was quite weak and very tired after walking.As of today she has lost almost 20lbs.


Thank you all again for your love and support.

Thursday, March 7, 2013

The lost month.



Hello friends,It's taking me a bit to get a chance to write here things have been so incredibly crazy.On February 1st Ariel and I went out shopping to buy her an outfit for the banquet the zoo was holding the next day.She was so excited.She bought some very nice black slacks and a pretty blue sequined top.That night we went out to eat with her friend Frances and the next morning we were going to go to breakfast for Nick's birthday and play some video games at the bowling alley.After the banquet we were going to go out for ice cream.Ariel and I had been doing a lot of studying on the fructose malabsorption problem she has that had been causing so much pain in her tummy.We were going to change her diet completely to see if we could get her to quit having such bad tummy aches.That night Ariel got sick, very violently sick.She started vomiting a lot.Due to the fact we have to get seizure meds in her and she couldn't keep anything down I ended up taking her to the E.R.




One of the problems we run into with Ariel is the fact that she is allergic to most nausea meds.She gets Tardive Dyskenesia from them.They decided to admit her and we had to be transferred to another hospital due to insurance issues.Upon getting there we had a very nice G.I. doctor and they figured they would just watch her,well that week they tried a couple of different meds on her that of course gave her Dyskenesia.She  also had several days of having convulsive seizures,where here 02 would drop to 79 and her heart rate would go through the roof.It was quite scary and Ariel looked awful.



I was being told so many different things ,from it was just a virus to they thought she may have a form of Meningitis.She had an Ultrasound,CT scan and then they were going to do a Lumbar Puncture under conscious sedation,well the problem with that is kids that regularly take Benzo's for seizure control have a hard time being put out and they realized that after 5 doses of Versed and 5 doses of something else I can't remember they couldn't do it.Then one night she was having some kind of weird like dystonic episode and she coughed and a huge amount of bright red, clotty blood came out her mouth.It scared me half to death.The team had to come in and suction her out.Ariel was terrified.




Then they called for this Internal medicine guy.This was our first encounter with a crummy doctor.He took one look at her,now mind you she had blood all over the entire front of her gown and said she had a seizure and bit her tongue.That was the stupidist thing I have ever heard.For one thing she wasn't in a seizure and secondly Daniel bites his tongue constantly.I have never seen that amount of blood or that color.Blood from a bite in the mouth is diluted with saliva it is not bright red or thick looking,not to mention after suctioning her they rinsed her mouth out and looked inside it with a flashlight and saw no bites.This brilliant doctor said "I'm sure they are there we just can't see them,"What! He ordered an Endoscopy for the next morning,but said he was sure they wouldn't find anything.



It took them several sticks to get another I.V. in her.Poor girl her veins have always been bad,but when she is getting stuck over and over it gets really bad for her.They finally ended up using her old one that wasn't great.I think I was out in the waiting room for an hour the surgeon called and said her tummy was very inflamed with Gastritis and she had an Esophageal tear,so they would give her meds for that.Ariel was still very sick,looking awful still vomiting quite a lot and the doctor comes in the next morning and tells me he is sending her home with nothing at all for pain or nausea and to just give her gingerale.I couldn't believe he was going to send her home in the same condition she came in,so after going to the patient reps and complaining he said he would keep her but only give her Tylenol and nothing for nausea oh and hospitals aren't for sick people,what?!!!! Yes, I always go to the hospital when I'm well just for the fun of it.



So we went home with the plan that if she didn't get better we would take her to Overlake where her G.I. doctor is at.We came home and Ariel slept for 9 hours and then woke up and started vomiting again,so I made the hour and a half journey to Overlake.At the E.R. they decided to give her Phenergen,well she had gotten Dyskenesia from it at Harrison,but the doctor told me if he loaded her with Benadryl first she would'nt have that problem.So he did an guess what? She still got Dyskenesia and it really scared her.Ariel told me later it's like someone burying you in a coffin and you can't get out or stuffing you in a tied trashbag.Poor girl what a scary feeling that must be.Then the attending came in.At first she sort of looked like the professor type that Ariel never does well with,with her glasses at the end of her nose,but she was kind and caring and very sweet.I loved her.She could not believe any doctor would send her home in that condition.So she admitted her.





After several days of being there she decided to put a PICC line in her and give her TPN feeds.This was the period where Ariel was the most stable I had seen her.She had gotten some color and after all the meds was able to eat the most I had seen her eat in weeks a whole half of a sandwich.






We still didn't know what was causing it.Ikept hearing virus thrown around,which I never bought.For one thing she never had a fever,elevated counts and no one in our house was sick with this supposed horrible virus that shuts your gut down.Ariel was so bummed to have to spend Valentine's day in the hospital,but she made Valentine's for all the doctors and nurses and everyone adored her.Unfortunately the doctor we really liked told me she would be leaving and we would be getting a new one in the morning.I asked if she was nice? She said "she's smart." Again I asked if she was nice? "She's firm." Code for she has a very crummy bedside manner and boy did she.





The first thing this gal did was to send the nurse up with a big needle to inject in Ariel's stomach.I asked her what for? She said "For constipation." "Based on what?" I asked, oh turns out based on her 8 day old CT scan.I refused that.I knew that was no longer the case and this doctor was trying to make out that the big majority of her problem was from constipation,really? Then the doctor comes in and started interrogating Ariel as to why she won't eat.Does she not like the hospital food? she acted like she was purposely not eating because she was annorexic or something.Then she says to her,"Well I would give you an Ultrasound,but your not thin." My mama bear was showing her teeth at that point.



Boy I about lost it and finally asked her to step outside.I asked her what her problem was? and did she not realize my daughters impaired? Get this she tells me she's worked with special needs kids,how frightening is that? And that the parents get mad when she doesn't talk to the kids.I explained to her there is a difference between talking to them and interrogating them and how I didn't care for her comment about my daughters weight.She appologized,but nothing changed,in fact I think she got nastier.She also seemed to be obsessed by anything I ate.At Overlake they are all for making you eat healthy whether you like it or not.Everything in the vending machines are these tasteless ,nasty snacks.I like baked Lays,but these chips are some off brand that taste like dirt and you get like 3 per bag.So I found a Walgreen's in the hospital and bought myself a small individual sized bag of chips and Ariel some cheese and crackers,that she only ate like a few bites of the crackers.She was like " I see you can eat snacks."

At this point I didn't care what she ate as long as she ate anything.Everytime she came in the room she made comments about what food I had in the room.I'm in a hospital not at the grocery store or home or the farmer's market.I'm making due with whatever I could find.
Then she takes Ariel off of everything that was giving her stability and wants to switch her to just Tylenol.I had,had it at this point with her rudeness and nastiness.I asked to speak with the charge nurse.I told her that woman was to no longer care for my daughter.That I did not care for her and she obviously didn't like me or Ariel for whatever reason.The next thing I know she comes in the very next morning and says she's discharging Ariel and again sending her home with nothing for nausea.I was fine with leaving I just wanted away from her nastiness.People like that should not be in the profession of helping people.





So we went home and were hoping we could stay here as long as possible and Ariel would just get better,well she didn't without the around the clock I.V. nausea meds she couldn't keep anything down.Not even liquids.After two days of this we ended up taking her to the E.R.They ended up giving her fluids and several doses of I.V. meds for nausea.They would have admitted her,but we had an appointment with the Internal medicine guy in the morning we wanted to keep.




I'm so glad I did.It's funny because this doctors profile he had long dredlocks and it said he spoke fluent Chinese and he's into accupuncture and karate.I'm thinking this should be interesting.He came in with his hair cut short and was one of the sweetest,kindest doctors ever.He was very thorough going over everything in Ariel's records and was playing with Ariel's squishy bunny.In his opinion this was progression of this syndrome she has causing her seizures.He said it would stand to reason that if you have a Neurological problem affecting your brain and it's all in your central nervous system then what's to stop it from affecting your gut.He went into a lot more medical detail that I can't remember,but he said she really needed a PICC line placed again if for nothing else than to get I.V.fluids.So we spent the whole day in town and she had it placed at St.Joes at 5:00pm.Poor girl had already been through so much being poked and prodded,having unkind doctors and just being so very ill.That night she had a bunch of seizures.




The following day we met with the nurse in Silverdale and she taught me how to do the I.V. fluids at home.We loaded up the mass amount of medical equipment and I decided to take Ariel to Petco one of her favorite places.Our whole month had been pretty much shot at this point.We had missed out on the banquet,Nick's birthday,Valentine's day,the War Horse play I had tickets to and seeing the Globetrotters.I figured she definitely deserved something fun.So she used her gift card to buy some Guppies and a calendar with Shih Tzu's on it and we went shopping at Super Walmart.She told me it was the most fun she's had in a long time.It was so nice to see her smile and be happy after such a tough month.