Welcome to Brianna's Page

Welcome to Brianna's Page

Friday, August 12, 2011

What is going on?! :( admitted again with no answers.

Hi friends. First I want to thank you for the prayers last month for Briannas ear tube and adenoid surgery, it went very well except for the fact that it took twice as long as they told me. She was just about her normal self by day 3.

Unfortunately... things have turned for her, for us, again. Since August 2nd and 3rd she started getting fussy, but nothing obvious of pain or discomfort. She was just not sleeping and being crabby throwing and hitting. I dismissed it hoping it was the heat or she just wasnt having a good day, daddy did start a new job and he wasnt spending nights at home so I thought maybe she was feeling out of sync.

By August 4th she actually started crying at bedtime, non stop crying. Literally. She wouldnt stop crying no matter what I did... so then I realized she wasnt feeling good, having no fever, no cough, runny nose none of the "obvious" signs of illness I immediately thought she may have an ear infection (since she had just had ear tubes placed 2 weeks prior). Off to the ER we went just my baby girl and I past midnight, that was only the 2nd time I go alone to the ER with her, daddy started his new job and couldnt miss already. This was a tough visit... she didnt stop crying all night.

Well her ears and nose and throat were looked at and they were clean no infection and tubes were in place. SO then what? We decided to do chest xrays due to her history of lung collapses and intestinal malrotation, some blood work, and some urine tests. If nothing came up they were going to do xrays for broken bones (since Brianna cannot communicate with us well enough and her speech is very very limited she cannot tell us what hurt, what was wrong... at all, just cried and screamed in pain, none stop.) Well the xrays showed she had backed up poop in her intestines so an enema was given to clean her out. She pooped about 20 mins later and she stopped crying. She actually started walking around the ER we immediately thought that was what was bothering her, and we took her home to continue pooping. We got home around 6:30am and tried to nap... that lasted 2 hours and she was back up and crying. I hooked her gtube up to eat and her stomach blew up it distended and got rock hard... bingo something else was going on with my baby.

For the record, these are the moments when I break down about her Agenesis of the Corpus Callosum and the developmental delays it has caused her especially in speech, it hurts that she couldnt communicate to tell us WHAT was wrong. (Or her chromosome disorder either or or actually both contribute to this).

Back to the ER we went after having been there a few hours prior that day. They did abdominal and chest xrays again. At this point she was so dehydrated her tongue was so dry it had not the least bit of oral secreations. They did blood work and a catherized urine test again. The chest xrays showed what they thought was pneumonia, (which we later found out by comparing them to her old admission xrays from January and February for the pneumonias and lung collapses that its chronic permanent damage that looks like lower lobe pneumonia to someone seeing her xrays for the first time... sad, very, it hurts to know that her little left lung is so damanged that we will always hear "she has pneumonia" "oh wait no she doesnt thats permanent consolidation....") anyway they started an IV and started antibiotics for a possible pneumonia, they said her intestinal lobes were very dialated and there was a lot of backed up stool that she had an ileus (intestinal paralysis...) so she was being admitted.

She was admitted from Aug 4 to the 7th, they gave her some bowel rest kept her hydrated on IV fluids and slowly started her on clear fluids through her gtube at a slow rate overnight by day 3. They took her off the antibotics when they agreed there was no pneumonia just permanent white spots. She tolerated two feeds at her home rate by day 4 and she was discharged, she was happy and running around we thought that was the end of that... we were wrong.

The same night we took her home (sunday the 7th) in the middle of her first home feed her stomach distended like a basketball, rock hard, and started getting fussy. We were all so very exhausted knowing she had just been taken off an IV we agreed she was hydrated enough to wait until the morning, since she no longer had fevers either. I vented her tube took all the contents out and her belly went down. Late that night I went out for pedialyt to try and give her a slow drip overnight to keep her hydrated until we went to see her pediatrician the following morning in hopes that he could help us without sending us back to the hospital. I had her at a miserable 15 mls (half an ounce) an hour and she didnt tolerate it. We went into her peds that morning and he wasnt there so we saw the Dr taking care of his patients she couldnt help us, all she did was make us an appt for the following day with our GI (it would have normally taken us 3 weeks min to get in there) she adviced to keep her on small amounts of pedialyte until then (this was monday). So Tuesday the 9th we went into Gi and she wasnt helpful either, her thought was that she still had some ileus (pralyzation) and that she needed a more aggresive clean out of her intestines. She put her on 3 different types of laxatives... milk of magnesia (her norm) miralax, and enemas. She adviced to keep her on pedialyte again for the next 24 hrs that makes sunday, monday, tuesday, and now wednesday on just pedialyte... and to try half pedialyte and half pediasure by thursday... argh.

OK so we did that that day kept her on pedialyte which she didnt tolerate even an ounce. I thought the idea of keeping her on pedialtye 4 days was ridicules I could already see her weight loss... which if you are a FB friend you know how hard we worked on helping her gain weight for surgery she actually gained 3 lbs which needless to say she has lost already :(

Wednesday afternoon I just brought her back to the hospital... frustrated for answers... this is our last try at CHOC in Orange, if we dont get answers which we havent we are pulling her from here and driving her to CHLA childrens in Los Angeles CA in search for answers.

ALL the same damn tests were ran again. Blood, urine, chest and abdominal xrays. Well xrays showed her ileus had "returned" (i say never receovere/went away). That her dialated lobes were worse, twice as bad to be exact. and yeaaaah again they tried to push that she had pneumonia.... I had them check the notes from last 'pneumonia scare' and they agreed her lung is just that screwed up, permanently. Sigh.

The ER attendant was ready to send her home on pedialyte again. I was pist and told them that that was not acceptable that I wasnt going to allow her to waste away on pedialyte when she cant tolerate a single ounce at almost 4 years old.... she left never came back a new Dr came back and admitted us without telling us what the plan would be.

Now we have been admitted since Wenesday the 10th today is Friday the 12th and by the looks of it will be here for quite some time. As we have no definite answers.

We have heard it all... from its just her and there is nothing they can do.

To we rushed her feeds last stay lets take it slower this time and allow more bowel rest.

To her stomach isnt digesting anymore we need to try predigested formula.

To she may need a gjtube or worst case TPN... I dontd want to go here yet, I will if I have to... this is either a new feeding tube that would feed into the intestines and bypass the stomach or TPN which is intravenous nutrition which feeds directly into the blood stream, the life expectancy isnt fantastic with this so we are leaving it for absolute last resort.

To there is no reason for this it just happened give it time.

To this is a secondary issue as a result of a primary problem of something we arent seeing.

To even pushing the supposed pneumonia again even though she has no fevers, and her cultures are all negative for viruses and bacteria.

Whats the plan? Not sure... I dont think they even know but my patience is growing thin.

They are giving her bowel rest again they are giving her ezythromicin not as an antibiotic but as a motility med and zantac to help with acidity even though she has a nissen fonduplication for GERD.

They ran more extensive blood work and another urine culture and all was negative. I keep requesting a ct scan or ultrasound but they keep telling me its not necessary. I feel there may be something else going on. They did do an upper GI with small bowel follow up and there was no obstruction or malrotation present but still something tells me there is something more going on than just severe constipation and her suddenly not digesting formula.

I feel that since she has two underlying conditions (acc and chromosome issue) they find it easy to say "its just her, its her anatomy" instead of looking into other possible reasons why this is happening.

Tonight they tried feeding her infalyte at a slow rate of 60ccs an hour thats two ounces and she didnt tolerate it, shes even distending without food in her belly and having lots of clear discharge.

I am going to demand a ct scan or ultrasound or a dang endoscopy/colonoscopy to the a.m drs or I will threatent to take her to CHLA and sue them if they find something they didnt that could have/be life threatning/altering.

I am frustrated, shes loosing weight has had pediasure 3 times in days... I have missed so much work I havent been able to pay my August rent, Septembers is around the corner... and we are broke.

My husband isnt a good advocate he takes what the Drs say and I dont, I speak up for my child so I have to be here with her. He works at night now which leaves me alone 90% of the day with her and its exhausting. I miss my Hailey girl so much, even if she doesnt lol.

I dont know what is next, I dont know what to demand but i will demand more tests. Please pray for her, for strength and for guidance for the doctors caring for her to figure this out. Please pray for us, her family to be able to stay positive.

Its getting very hard.

Today is also my baby sisters 13th birthday, I was able to run out for literally 2 hours to have dinner with her, it hurt very bad to have Bri at the hospital and not be able to join us in celebrating Jess. It was hard not to be able to join them for cake and presents and not have Brianna there but God willing she will get through this, and we will spending lots of time together.

Thank you all for listening to my rant more than an update update. I will try to post as we find anything else out or as things change and hopefully progress.

Prayers are much needed and much appreciated God Bless you all.

10 comments:

  1. Lots and lots of prayers coming your way! Brianna is so blessed to have you as a mom. You are an amazing woman.

    ReplyDelete
  2. Oh my. I'm praying for Brianna & strength for you and your precious family. I pray the docs will get you some news soon.

    ReplyDelete
  3. ~saying healing prayers for Brianna, strength and the peace of God for you and your family, and praying for wisdom for the doctors~

    Speak blessings over Brianna
    and (as difficult as it is to do during a dark time), begin praising God for every good blessing that He has given you.

    Love and Prayers,
    Sandie

    "For I will restore health unto thee, and I will heal thee of thy wounds, saith the Lord."

    - Jeremiah 17:14

    ReplyDelete
  4. "For I will restore health unto thee, and I will heal thee of thy wounds, saith the Lord."

    - Jeremiah 30:17 (correct bible verse)

    and

    - Jeremiah 17:14 says:

    "Heal me, oh Lord, and I shall be healed; save me, and I shall be saved: for thou art my praise"

    ReplyDelete
  5. I am so sorry ... I dont know how much of our story you have followed but we have been living this same story since March. In and out, on TPN, and finally said screw CHOC and now we are at UCLA. They are the TOP hospital on the West Coast for Pediatric GI/Motility disorders.

    ReplyDelete
  6. I have no idea what to say...my heart aches for you. I know that feeling too well...the knowing something is wrong, but not knowing exactly what it is. It is frustrating and very scary. Just know you are doing the best that you can (which is amazing by the way)...and that is all that that little girl needs. Do take some walks around the hospital inside and outside to gain some clarity and regain yourself. When you are stuck in that little room with all the beeps and whooshes it can get to be way too overwhelming and suffocating. Lots of strength and good thoughts coming your way!

    ReplyDelete
  7. Hi Sweet Brianna,
    My name is Jenna and I came across your site. you are such a strong, determined, courageous fighter. U are a brave warrior, smilen champ and an inspirational hero. U are an amazing precious, and special earthly angel. U will be in my thoughts. I was born with a rare life threatening disease, and love it when people sign my guestbook. www.miraclechamp.webs.com

    ReplyDelete
  8. God bless you mom and Briana!! I will be praying for blessings for you. Is there an address to send the birthday card for Briana? My email is mistycota@gmail.com Much love and healing prayers for you, Misty Cota

    ReplyDelete