Saturday, May 16, 2009

Labs and X-Rays

Yesterday we had Bailey's yearly labs and x-rays done. I thought I would arrive early and finish early so Bailey could be at school when it starts... 9am. So we arrived at Watson Clinic for her x-rays and we were finished within a 5 minutes. Great! However, I did question them about the x-rays because last time I remember they had to lay her on the table to do additional x-rays, but the tech said we were finished. So, off to the lab we go. We arrive at the lab and they try to convince the supervisor to allow them to do a finger stick. The supervisor tells them that Dr. W always wants his labs done in the arm. Well, they get the first vial from the arm, and then the flow of blood stops. So, they become successful in convincing their supervisor to allow a finger stick for the remaining vials. Bailey is just wonderful. Very few tears, and she even smiles as we sit for 30 minutes hearing all the stereotypes of children with Down syndrome and their moms. Finally, we're finished.

Then, we head to Dr. W's office for a weight check. As we're walking to the scales Dr. W sees us and say, "glad you're here. We need to do more x-rays of Bailey's neck". Apparently something didn't look quite right, and had they done the additional x-rays I questioned them about (which were also ordered), Dr. W would have been able to determine if there really was a problem. So, we finish doing the weight check, and she still isn't gaining weight. She's lost 1.5 pounds in 3 months. They're going to recheck her Monday morning.

So, we head back over to the clinic, finish the x-rays, and Bailey arrives at school 2 hours late! I go to my doc appointment, get diagnosed with bronchitis (so happy I went so I can start meds and get rid of this cough). I actually feel great, I just sound like crap! Then, I go to work and continue to worry about Bailey's x-rays. Sometimes I wish doctors wouldn't tell you there could be a problem. Just wait until there's a problem to tell me.

Finally, around 3pm I get a call from Dr. W's nurse. The x-rays look good! Whew! However, there are some issues with her white blood count and they are going to do a repeat CBC in a month. So now, we hang out and wait again. She has been sick a lot lately, so hopefully we just need to keep her healthy so those counts return to normal. We constantly have infections (staph, mrsa, bronchitis, weird fevers). So, we'll see what happens next month.

Well, I'm going to enjoy the rest of my quiet time. Keith is at the movies, and Aubrey and Bailey are both sleeping.


Tuesday, May 12, 2009

Appointment Update

Well, I guess it's my fault for being an "I need answers" kind of person. I always think there should be an answer and cause for everything, but now I wonder if I should just accept that some things are a mystery. I hate not getting answers.

We went to Dr. K today and I gave him the entire history of the past few weeks. He seemed concerned that today she had only had one wet diaper, but he had no explanation. He seemed concerned that she would only drink chocolate milk from a bottle for babies 0-3 months, but he said her throat is still irritated and that could be the cause, but why can she eat toast which is rough around the edges if her throat is hurting so badly. He's concerned that she rarely has a bowel movement, but he told us to give her an enema and MOM.

So our instructions are to get IV fluids if she goes 8 hours without a wet diaper... well that will happen daily, unless she drinks enough chocolate milk. Give her an enema tonight and tomorrow morning, start giving reflux meds again, and if she has to get IV fluids to get them to give her Prevacid in the IV. I questioned him about her possibly aspirating, but he really didn't comment on that. I explained the coughing and watery eyes, but he didn't seem concerned.

We can't keep taking her to the ER or admitting her for fluids. We can't keep giving her chocolate milk through a bottle. There has to be some reason for this, and there also has to be an end in sight. I can't get anyone to tell me when we'll start worrying about this. Should we continue with chocolate milk for a few days, weeks, months... how long?

This isn't normal for her. She eats and drinks anything! She's also lost 1.5 pounds since our last appointment 2-3 months ago. He said it may be due to being in the hospital, but she weighs the same she did when we were admitted.


Sunday, May 10, 2009

We Have an Appointment With GI

We will be seeing GI on Tuesday, and I will request another swallow study. She has had several in her life because of aspiration, but the last showed clear. Since we had the cold/bronchitis issue maybe that caused some other problems! Thank you all for that advice! We suggested at the hospital that we thicken her liquids, but that idea was dismissed by the staff there. But she is, like Leah said, getting watery eyes and spitting it back out with force. I really could have used an umbrella these past few days! She even refused fruit and applesauce. Well, we'll see what they decide on Tuesday. She'll also be returning to preschool on Monday and I'll get with the speech therapist there and see if she can start working on these current issues.

Yes Em, Dianne called yesterday morning to give me the good news. I'm so happy for her, and thankful that you were able to go up there. Dianne said she was a bit upset that she didn't have family around. So, thank you! I can't believe she was in labor that long... I'm so thankful for cesareans!


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.


Friday, May 8, 2009

Happy Birthday Bailey!

Well Thursday was Bailey's second birthday. She continued feeling that drinking wasn't a necessity. However, Dr. W felt that she needed fluids and admitted her to Lakeland Regional. We had plans to celebrate her 2nd Birthday tomorrow, however those plans have now been cancelled. We hope to be out soon.


Tuesday, May 5, 2009


Well, the last wet diaper she had was last night. She also had no interest in drinking anything today. Dr. W made the decision for us to take her to the ER. So off to the ER we go. They were able to get us right back, which is great. I hated even going there because I didn't want to expose her to the germs at the hospital, so getting on back was good news. The doctor we had was the same we had when she went into heart failure. He was, once again, great. He checked everything. Urine, negative. Abdominal x-ray showed constipation so we gave her an enema. She was dehydrated, so she received several hours of IV fluids (he says enough to get her through 1-2 days). Chest x-ray showed bronchitis. CBC was okay, but we'll get a repeat in a few weeks with Dr. W. Urinalysis, negative. Bronchitis was a bit of a surprise, since she's shown no symptoms. However, she has now completely lost her voice, and has been sneezing and has a nasty cough. She is still smiling, and has an amazing appetite. We follow up with Dr. W tomorrow, and the doc today said she can return to school Thursday, but we'll get the final okay tomorrow.

I also got an opportunity to thank the doc for everything he did when she went into heart failure. I thanked him for saving her life, but he said he had nothing to do with it. He said she was in Gods hands, and I say we were blessed to have this staff on duty that very scary day.


Monday, May 4, 2009


Bailey has been running a low grade fever for a few days now. Over the weekend it did get to 102-103 on occasion. It's now hovering around 101. She has NO symptoms. She's been smiling, giggling, laughing, eating, drinking, etc. She was a bit more quiet tonight than usual, but other than that she's seemed fine. I did call Dr. W today and he asked us to bring her in. I brought her in, thinking it was possibly a UTI (she has a history of them), but his main concern was the flu... good news, she doesn't have the Swine Flu! Her lungs are clear, ears look good, nose and throat look good. So now, we'll just wait. I'm sure it'll pass, but I hope it does soon. We'll be celebrating her second birthday this week! Plus she's missing school!


Friday, May 1, 2009

Book Review

I laughed, cried, and couldn't put it down. This book made me feel "normal", especially since we are approaching Bailey's 2nd birthday and those thoughts of her birth and first 2 years are in my mind constantly. Lately, I've been happy, overwhelmed, stressed, and doubting my abilities as a mom and wife. This book, as well as the Gifts book, have been so helpful in allowing me to understand my own feelings and uncertainties. Thankfully, we didn't have issues with Bailey being a preemie like Thomas, but we did have to endure several months of hospital stays due to her heart issues. Like the Soper family, the diagnosis of Down syndrome for us was not received until after birth. It was comforting to know another mom felt the same emotions I felt when Bailey was born. The excitement of a new child, the sadness due to "mourning" the child you didn't have, and the stress and overwhelming feeling of having a child with medical complications. I love seeing Thomas and his siblings grow to love each other. I loved seeing websites which were very familiar to Kathryn Soper during her research were the same as those I used. The help I received from is more than I ever received from the medical community. I will be forever grateful for the families on that website for the advice and support they gave, and continue, to give. I also enjoyed reading the last few chapters which make reference to the Gifts book, and the process she went through in gathering stories and getting the book on the shelf. I remember going to Barnes and Noble while Bailey was in the hospital. We were looking for something that would give us hope, and Gifts did just that. So, Kathryn Soper got me through birth, diagnosis, and first year... now, I can only hope we'll see something about the toddler days.