Dani’s doctor appointment

Dani had her follow up with the GI doctor today.  All I can do is shake my head at Dani.  It seemed she wanted to show off today for her doctor and we ending up meeting more specialists, having an ultrasound done on her heart and threatened with a hospital stay.  Dan and I did some fine dancing to keep her home with us.

GI Doctor

Since Dani is still throwing up despite the Carafate and two week antibiotic regiment, a new plan of attack was made.  The thought is that she still has the H. Pylori Bacteria in her.  She was switched to 30mg Prevacid twice a day.  Her Prevacid is to be given 30 minutes before her feeding.  She needs to be elevated during her feeding (she has already been doing this).  Then 1 hour after her feeding, she is to get the Carafate.  Dani will also be starting Erythromycin as well to see if it will help her out.

 

We, Dani is still quite stingy with her coughs when she wants to be and today was her day.  When she does this, it really sounds like she is in respiratory distress.  She has the flaring nostrils, fast & noisy breathing, and she really works at breathing.  We are used to this trick and usually get her to cough then she is back to the same ol’ Dani.  However, the GI doctor made sure a Pulmonologist saw her today as well.

 

Pulmonologist

He took one look at her and starting talking about hospitalization.  It took awhile before he listened that Dani doesn’t do this all day long, just maybe once a day.  He took an extensive history of her while watching her in “respiratory distress.”  He did get another new machine for Dani.  This one is a vest that thumps on her chest, breaking up the mucus for her.  She will have this done 4 times a day.  We are thankful the insurance is paying for this one because it was $16,000!  She will get it in 4 days.  He also scheduled Dani for a sleep study to make sure everything is good in that area as well.  She will then get this test preformed yearly.  Then he asked if she is followed by a cardiologist.  Well, you know who saw her next…

 

Cardiologist

Dani got an ultrasound done on her heart and an EKG.  She was not the ideal patient for this.  She cried and protested during the whole procedure.  You see, she missed her lunch and we were tapping into her nap time.  Dani will get these test repeated yearly as well.  We have not heard the results of these tests yet.  It was explained to us that kids like Dani work so hard at breathing and sometimes they do not take in enough oxygen.  Doing this over a long period of time, they can actually enlarge their valves or heart.  That is why she needs to be monitored…

 

To me, it was nice and refreshing to see a doctor take charge and say she needs to been seen by this specialist for this reason and to get tests scheduled and done right away.  But this was Dani’s first meeting with this doctor.  I just hope he can keep that enthusiasm in the future despite Dani’s “mystery diagnosis” she is so fond of doing!

 

Dan and I decided to hold off on going back out to Philadelphia late August.  We don’t feel she really is up for a plan ride and really don’t know what she is doing.   Her advocate understood and will see her when Dani is doing better.

 

Dani has appointments the second week in August in Minneapolis.  She will finally see her neurosurgeon for a follow up.  She will see an Urologist for her neurogenic bladder.  We are also getting a second opinion done with another GI doctor.  It will be our last getaway before school starts.  Kaylee and Brianna will start August 20^th. 

 

 

 

 

no change in Dani…

Dani is doing the same…throwing up…crying out…screaming…coughing…and having thick mucus we have to suction out of her.  Wednesday, we have a follow up with her GI doctor, but since she really does have a “virus”, I don’t hold out that he will do much for her at this time.  We have appointments set for mid August in Minneapolis for a second opinion and to see an urologist.

Now Dani is sick…

Well, if the doctors say she has a virus, I will finally agree with them.  Dani has cold like symptoms and they are kicking her butt.  We have resorted back to giving her neb treatments and suctioning mucus out for her.  She has a runny nose, coughing and sneezing.  I even put her oximeter on her to monitor her oxygen levels because she didn’t look to good this morning.  Her oxygen levels were great, but her heart rate was in the 180s.  She just threw up and it was very thick and sticky, thankfully she got it up and out on her own.  I think we are in for a long weekend…

Dani didn’t respond to the medication as the doctors hoped she would.  Dani is progressively getting worse with her throwing up and crying out when being fed.  The medication did not make Dani any better.  We went back into the doctor today and did some blood work and to try Carafate medication again.  Dani has another appointment next Wednesday to see if she has improved.   Other than that, we get to put up with the “Mega Brat” until she reveals another mystery.

I packed up the girls and we headed back to Sisseton for the weekend.  Although Dani didn’t behave enough to be a part of the parade, she got to spend time alone with Grandma Donna.   The Heiers, Tony and Jasmin came back as well.    

Dani is slowly responding to her medication.  She had me worried at first.  Today is the first day that she didn’t throw up.  She is still crying out at meal times, but it is only about 50% of the time.  Also, she doesn’t use her big girl cry or screams as much as she had in the past.  Also, Dani is finally pooping on her own again!  So, our fingers are crossed that her medications fix this.

Dani’s new respiratory patterning machine came in today.  Although we didn’t get the insurance to pay for it because it was purchased directly from Germany, we did get the State to pay for ½ of it.  We had to use all of economic stimulus check to pay for the other half and then some.   The machine was over $4300!  The best way to explain what this machine does it is like a CPAP machine, but it is a vest that Dani wears to help her to do deep breathing.  The goal is to get her away from her shallow breathing that she is so fond of doing!

Dan and I are debating about Dani’s next Philadelphia trip in August.  We are leaning on the possibility of not bringing her back out there until she completely heals from her latest sickness.  We are working with Philadelphia to see what the best decision for Dani is.

Dani revealed a mystery…

Being around Dani this weekend was like having a colicky baby.   I admit I had to put her in room and shut the door and let her cry because I can’t help her or stop her crying out.  We got our doctor appointment this morning.  More tests were ran on her.  The first thing that was found was that Dani still has a significant amount of barium in her colon from her testing 2 ½ weeks ago.  The big mystery is Dani has a H. pylori infection in her stomach.  This is bacterial infection that is rare and most common seen in adults.   With that said, I am not surprised Dani has it.  Her blood work was negative for finding H. pylori, but the biopsy that was done on her stomach  when she was in the hospital revealed her mystery.   Dani will undergo two antibiotic medications for 14 days.  Dani has until Thursday to poop out her barium, otherwise we have to see what the next step is for her.  This will be the 3^rd day of enemas with no results…

Here are some websites on H. pylori…

http://kidshealth.org/parent/infections/stomach/h_pylori.html

 http://www.life-enhancement.com/article_template.asp?ID=714

Here is how Dani’s days have been going…

5AM – Wakes us up by crying out in her sleep.  We re-position her and change her diaper

6AM – Wakes us up by her big girl cry, we again re – position her and check her diaper

7 AM – Wakes us up by screaming.  When she is quieted down, we start her feeding.  Then the crying and screaming is constant during her feeding.  She also has a bonus, because she may or may not throw up her feeding.  Dani will be like this for the next two to three hours.  In between her crying, Dani seizures are once again back and she has been having more and more each day.

11 AM- Dani finally falls into an exhaustive sleep and all is quiet.  I overlook the throw up in her hair and just let my baby sleep.  Her sleep does not last long and I sneak a bath in for Dani.

12PM – Time for Dani’s feeding again and it all starts over…the crying…the screaming…the throwing up..the seizures…only to do the same at 4PM and 8PM.

Tomorrow calls are going into doctors because clearly this is not the flu or a bug Dani has, something is wrong with her that she cannot tolerate her feedings.  Do you know how hard it is to hear her cry out so much and there is not a damn thing you can do about it?

HAPPY BIRTHDAY DANI!

Wow!  Three years old, you made it!   My wish for you is not to struggle as much as you have had to your last three years.  My hope for you is that you are happy.   I dream that one day we will unlock all your mysteries and be pain free.   Dani, you have touched so many lives out there, I hope you realize that all your efforts are not in vain.  You have taught us so much in life.  You are admired by many and you inspire even more people.   We all ride the Dani German roller coaster.  We celebrate your good days and we all cry with you on your bad days.  But most of all, Dani, I hope you can feel our love for you and wherever the road leads you that you will always be our little girl.

We went out to celebrate Dani’s special day.  We went to Texas Roadhouse and the girls were excited to have a family night.   However, Dani wasn’t as thrilled.  I had to leave with her early because she was getting upset and not liking the noise.  I feel even more defeated that something as simple as going out to eat, exhausts and upsets her.  I just wish we could figure out how to help her…