Saturday, May 9, 2009

Help, Advice, Something!?!

Let me first start by saying we arrived home from the hospital about 2 hours ago.

Now... the long story and I'd love advice if anyone has some to share.

Over a week ago Bailey starting running a low grade fever. Then, last weekend it started getting higher 102-103. On Monday we went to the doctor where he said "it's viral, she'll get better". Monday night she stopped eating and drinking and her last wet diaper was at 8:00pm.

Mid morning Tuesday I call Dr. W again and he sends us to the ER for fluids. We arrive at the ER where they do a CBC, urinalysis, chest and abdominal x-rays, and examine her eyes, ears, throat, breathing, etc. Abdominal x-rays showed constipation, so she received an enema (she pooped then, and hasn't pooped since). She was also diagnoses with bronchitis and pharyngitis. They gave her fluids for 4 hours, and sent us home with an antibiotic.

Wednesday we follow up with Dr. W. She's looking okay, but she still isn't drinking. He said to keep an eye on her and update him Thursday. So, on Thursday she still hasn't had anything to drink so I call him and he gives me 4 hours to get her to drink 4 ounces. So, I gave her a dose of Motrin to relieve any possible pain and start trying to get any type of fluid in her. No luck! So, we go to Dr. W's office. He looks at her and says she's looking okay, but he is concerned that she isn't drinking. He's still leaning towards viral, but is more concerned about dehydration. She still has tears, but her wet diapers are getting less frequent. So he decides to admit her.

We arrive at the hospital, get settled in, and then our nurse comes in to introduce herself. Well, she's the nurse I wrote a letter to the hospital complaining about from our last visit. She, of course, remembered us and I see that if my issue was addressed (which her supervisor said it would be) it didn't cause any changes to be made. She was still very difficult to deal with and very rude. Well I didn't make a request to change because I knew we'd only have her a few hours before shift change and thankfully we didn't get her any more. So they started IV fluids and antibiotics. We also continued the Motrin for pain.

On Friday, she still wasn't drinking. The doctor started discharge paperwork and said if we could get her to drink something they would discharge her. The problem that had us confused was that Bailey would eat with no problems, but when she tried to drink she would spit it back out at us. We tried water, apple juice, gatorade, milk, chocolate milk and nothing worked. We requested ice cream, and she ate that. The nurse said that counted as a liquid and they could release us, buy I didn't feel comfortable bringing her home if that was the only "liquid" she was consuming, so we stayed another night.

Today, my goal was to get her to drink. They reduced the amount of IV fluids going in her body and I ordered salty and acidic foods. I just knew this would work! So, I pour gatorade and she refuses, I try milk and she refuses, I try apple juice and she refuses. I even tried coffee and got nothing! We were using a sippy cup and a cup with a straw because she uses those 2 items at home. Then a nurse suggested we try a bottle, so we tried that with gatorade and got nothing. Then we try chocolate milk in the bottle and she drinks an amount which we are satisfied with. Then, we order a meal for her and get regular milk. We put that in the bottle and she refuses. Then, I refill it with chocolate milk and she drinks it. So we think obviously the current issue isn't medical and we decide to come home. Knowing if we need to get fluids in her we can use a bottle filled with chocolate milk. We came home and had dinner. I tried giving her juice and she refused. I did not give anything else, so hopefully she'll be thirsty in the morning.

Now, I want to understand what her problem is. Why is she doing this? Has she regressed? Did we really screw up in our desperation by giving her a bottle with chocolate milk? What do we do now? Is this going to keep happening?

I'm exhausted. Goodnight.



Leah said...

Hmm I'm surprised nobody bothered to do a swallow study. I'm guessing she's aspirating liquids. Thicker liquids (milks is thicker than water) are easier to swallow. Water is the most difficult because A) it's thin and B) it doesn't have flavor. Chocolate milk would not only be thicker, but it has more flavor as well. The flavor helps kids know where the liquid is in their mouth, making it easier for them to control. My Angela was a liquid aspirator. She was fine on the bottle, but would aspirate from a cup or straw. It was just too fast for her. From a bottle she could control the flow easier. This is really a common problem among kids with DS, so I'm surprised they didn't check it out further.

Leah said...

Oh yeah...symptoms of liquid aspiration are: spitting liquids back out (actually they sometimes SHOOT back out, as their swallow is sometimes messed up that their tongue forces liquids the wrong way.) eyes watering when they drink. Angela would do 2 things. She would swallow a couple swallows, then throw the cup away from her, while quickly turning her head to one side. (she was trying to protect her airway.)

Mommy to those Special Ks said...

I was going to say aspiration too. Kennedy also aspirated and had to have all her liquids thickened. I would definitely ask for a swallow study just to make sure everything is ok!

Emilie said...

Hey Trish,
I'm thinking a swallow study too. Aunt Sonya would do the same type things to me also, it was very frustrating and confusing. One day something would go down fine, so I try the same thing the next day and everything would trickle out of her mouth. Once she had her swallow study done, the gastro dr. was able to advise on how to feed her. Good Luck!

BTW...You have a new cousin! Ashley had her little boy yesterday around 3 am. He looks like her and Logan when they were babies! 8 lbs, 12 oz....I think, 21 in.