Dani has been easing back in to the swing of things this week.  We had to crack back out her feeding pump because she is on Peptamen Junior liquid feedings.  This is the only thing she could keep down.  Her Prevacid was switched to twice a day to combat her reflux.  Dani is waking up crying at about 4 AM every morning.  She gets a diaper change and repositioned and lets us know at 5 AM she still is not happy.  Dani is showing her doctors that it is not a virus that she has because she is back to throwing up her 4 PM feeding.  So, I am working on getting a second opinion from another GI doctor and I also need to find an urologist for Dani. 

I think pretty much Dani’s big birthday party is on hold until we see how she bounces back from her sickness.  I hate to over stimulate her with visitors.

Other than that, just hanging out at home and waiting to see what Dani starts doing next…

We will see how long this lasts…

Dani’s test yesterday went fine.  The typical Dani results, “Normal.”  They changed her to a different formula and she actually kept it down.  After 10 days of either no food or throwing up, she finally kept down some food.  Her poor ribs and hips stick out even more.  Dani is on a continuous feed and will be working up to bolus feedings.  We opted to take Dani HOME and work out her feeding schedule since we have been in this boat before.  It was good to get home.  Kaylee and Brianna decided to camp out at Grandma Donna’s for the next week.  We follow up with her doctor this week. 

When we were getting Dani ready for bed, Dan asked for one of Dani’s spit rag because it looked like Dani was drooling.  A closer look, Dani threw up…

We will see where this leads us and let’s hope it is not back in the hospital….

Dani will get better on Dani time…

We are still no closer to finding out what is wrong with Dani than a week ago.  Here is what has been going on the last couple of days, maybe you can see my frustration?

Dani once again started throwing up.  No matter how slow her feedings are, after 5 hours she starts throwing everything up. 

Dani got a head CT done to rule out any new pressure or bleeds.  This came back unchanged from the one done in April.   

The GI doctor suggested to try a formula based feeding to see how it goes.  We opted for Compleat Pediatric.  Dani at first (as always) seemed to handle it.  She was on a continuous feed at 15 ml/hr.  Five hours later, Dani started crying out, went into a neuro storm and would wrench on her tummy in pain.  We stopped her feeding and vented her g-tube and she settled down and went back to sleep.  Her feedings were started up again this morning.  By noon, she started crying.  And Dani learned something new, she screams.  For a child that doesn’t cry, the screaming is really upsetting to hear.  But here is the kicker, when all this was going on, it was decided to increase her feeds.  You could imagine how I felt, since I was not in this decision, and was told her feedings were not going to be stopped since there really isn’t any correlation that her feeds is causing her pain.  OK, WHAT THE HECK IS CAUSING HER TO SCREAM!  Then it was decided it was a seizure she was having, again WITHOUT seeing her and these defiantly are not her seizures.  Two hours later Dani is finally sleeping, I don’t know if it truly is a deep sleep or the pain was so much that she shut down.  She is going to be once again depending on IV fluids for her nutrition.   Yes, I opted for no feeding to let Dani rest.  They did an x-ray to see what was going on with her tummy.  They are thinking she just needs to poop.  Oh, but Dani has her own agenda, because she had a rectal exam that proved she didn’t have stool that she couldn’t pass. Tomorrow, Dani will have another test to try to find answers.  I forget the name, but a scope will be placed down her throat to look at her stomach.  Hopefully, we get a plan of attack, but I am not holding by breath because this is Dani we are talking about.

A big thank you to the Heier’s for taking Kaylee and Brianna!  Poor Rex can’t wait for everyone to be back home again.  When Dan or I do get home, he just runs from room to room crying for the girls.

 

 

Still unlocking Dani’s mysteries

Well, Dani is still hanging out at the hospital.   Not much has changed and it is becoming a typical Dani stay.  Fighting an infection without finding the source and the doctors are unsure of the next step.  Yesterday, she started on her feeds again.  Tonight, she decided to start throwing them up.  It doesn’t get easier each hospital stay, it is only the opposite.  I admire Dani for her will to fight and will to survive.  But I get equally frustrated on how quickly she gets her doctors to scratch their heads and play the “wait and see” game.  Nothing is easy with her and it is only getting more complicated.  Dan and I both cathed Dani for the first time and I have a feeling it won’t be the last time either.  Dani continues to show that she is in charge and the doctors have a tough time figuring out what she is doing.  She doesn’t let them get to comfortable before she throws new stuff at them.   I am tired, we have brought her to every specialist possible, she even goes to doctors over 1,000 miles away and for what?  To work her butt off with a very intense program only to get sick and have to start back at square one?  What a cruel life she is dealt…

Happy Father’s Day and Anniversary Dan!

Everything finally passed through her small intestine of course Dani wouldn’t be a good patient and poop the barium out.  It took a suppository and enema before she completed the task.  Dani is finally having some good wet diapers, I think she is over her dehydration.  Dani’s neuro storms are back, but we noticed they only happen when she has to pee.  Her neurogenic bladder is getting worse.  Dani no longer empties her bladder completely.  They caught this on all her x-rays that her bladder was always full and distended.  Today, her bladder was rock hard and was crying out.  We massaged her bladder so she could go to the bathroom and it did help her pee.  The nurses used a bladder scanner and could tell her had not emptied her bladder completely and that she had 147 ml in there yet.  A catheter had to be placed so her bladder could empty.  They pulled an additional 150 ml out of Dani and her diaper weighed 208!   The doctor said the time has come where we will have to cath her at home so she can complete this simple task.  We will begin cathing her 3 times a day.  I am so afraid and scared that one day, we will not be able to meet Dani’s needs at home…why does things have to be so difficult with Dani?

No update

Well, Dani picked a wonderful time to work on “Dani Time.” Her barium testing is still NOT completed. She will get more x-rays tomorrow morning and hopefully everything has passed through her small intestine by then! They are waiting for the princess to poop as well. They want to test it for blood. Dani’s neuro storms have also come back. Hopefully tomorrow Dani will let us unlock her newest mystery…

8 month streak broken….

Dani had a crappy night, well so did I.   Could it be that it is because Dani is once again in the HOSPITAL!   She was admitted for dehydration since she was throwing up for a week.  Then they found a UTI (urinary tract infection).   But that doesn’t explain the throwing up.  Today they started a barium test to see how food passes through her stomach and small intestine.  Well, the test started at 8 AM this morning and is still going on.  First issue, Dani’s stomach only holds 2 ounces before it is full!  Now, what have I been saying about her feedings lately?  The next issue is that it is not passing through her small intestine as fast as it should, that is what is taking the test so long.  They are still in the early stages and diagnosing her so we don’t know what the next step is just yet..

Well, I tried to get smart to combat Dani’s puking, but she just succeeded in knocking me back down a few pegs.  Dan and I made her original food, since each feeding is about 4-5 ounces instead of her usual 7-8 ounces.  My thought is that she is getting too much and can’t handle it.  Well, she showed me she can throw this food just as good as her others.  This was bath #1 for Dani.  Defeated, I started giving her Pedialyte every hour.  I tried again to be smart.  I dug out her feeding pump and tried to feed her 20 cc an hour.  But her food kept getting clogged, so back to the Pedialyte.  Finally, at 5 pm, I found her magic number is 20.  She can only handle 20 ml each hour without throwing up.  Her 4 pm feeding was the best.  She not only had throw up coming out of her mouth, but her g-tube since I had her vented.  She also gave me the bonus plan.  She pooped.  She had crap all the up to her shoulder blades.  Bath #2.    We will be making her a doctor’s appointment as well as talking with the Institutes…

Dani being Dani…

Well, I wish I could say the reason for no postings is that all is good in the German house…but Dani likes to be ornery.  Just when we think we are unlocking one of Dani’s mysteries, she starts doing something new.  April 25^th, Dani was officially off the Prevacid.  I think this was the beginning of our problems.  A few weeks after that, Dani started throwing up her 4 PM feeding.  We put her back on the Prevacid, but it isn’t working.  Dani is now throwing up 3 out of her 4 feedings a day.  Not only that, when we feed her, she cries out.  Dani is not tolerating her feeding at all.  You don’t know how heartbreaking to see such a simple task makes her cry so much.  She will even tense up her body as we feed her.  It is not unusual for Dani to get one or more baths a day.  We have her bed elevated so she doesn’t eat laying flat.  I am thinking that maybe now that she is off the Valium, that her gut and stomach are working better and isn’t sedated as much.  With that said, maybe she is allergic to something in her food and is now able to voice that something doesn’t settle with her.  Who knows with Dani?

Not only that but her towels we have under her head for her throwing up, usually has blood on it.  Her teeth we blame for the blood and fever Dani has, oh, you can’t forget the poops!  So, you can see, Dani has been a barrel of fun the last couple of weeks.

Dani has also excelled at being a CRABBY PATTY.  She cries so much at times that she gets tears running down her face.  It is wonderful to hear her vocalize her opinion, but it kills me inside to see her in pain.

Here we thought we were getting to a good time with Dani.  She was smiling and giggling again and making gains on her program.  I should have known that things with Dani can’t be good for very long…it is just that I feel defeated.   Dani has fought so many obstacles to make it another year.  The smiles are pretty much gone again and at the end of the day, Dan and I are mentally and physically exhausted.  Day in and day out we watch her struggle.  She makes a gain in life, but then gets kicked backwards every time.  The deck has been stacked against her from day one and we must be kidding ourselves to think Dani can have a life.  I don’t know what is right any more.  I don’t know if we are even helping Dani out anymore.  I do know that I am tired, tired of her struggles, tired of her throwing up, tired of going in the wrong direction.  I just don’t know what to do anymore…