Tuesday, June 23, 2009

Cruz visited the ACH Pulmanologist!

Finally, our appointment was yesterday. As you know, my baby Cruz has had some lung issues since birth. We have had MANY trips to the pediatritian, who kept telling us he had a virus he couldn't get over. I never bought that. Motherly instinct kept telling me there was something else going on. So after lots of $$ on medications that did not help, she finally referred us to a pulmanologist with Arkansas Childrens' Hospital.

Our appointment was yesterday at 10am. They first took xrays on his chest. I wish I had pictures of how they xray a 6 month old! He was sitting on a table that had holes for his legs to go through. Then, I had to hold his arms up while they incapsulated him in a clear tube with a cut out for his face. He looked so funny in that thing! Can't believe he didn't cry!!

Next, we met with a nurse who asked a TON of questions about his medical history. When I told her that I cannot remember him every being well and always having a rattling chest, she immediatly said she suspected it had something to do with him not swallowing well and fluid getting into his lungs. Interesting! She was also concerned with his weight. He is in the "less than 3%" for wieght. She said this was somewhat alarming and decided I also needed to meet with a nutritionist while we were there.

Then Dr. Menendez came in to meet with us and she was wonderful! She agreed with everything the nurse had already suggested. They decided to put Cruz on Simply Thick, which is an additive to his bottle to make it more thick and easier to swallow. She said when he is drinking a bottle it is like a constant drip into his lungs, which then irritates them. She said the xrays showed his lungs where swollen (bronchitis) and this is because of the excess fluid.

She also said she is concerned and will keep an eye on him for possible asthma in the future. He also has really dry skin, which is a sign of that. And, with his weight issue, she decided to also have him tested for cystic fibrosis. Very scary, but I really feel confident this is not what his problem is. But a big sign of CF is not gaining weight and constant lung problems. We will be going to Arkansas Children's Hospital this Friday at 1pm to have a sweat test run. Please pray for Cruz and that his test comes back negative.

We then met with a pediatric respratory therapist who put him on 3 different inhalers. One he will take twice a day (Flovent). And 2 that he will take if he seems to be getting worse.

The nutritionist decided we needed to increase his calories, so we are making bottles with more scoops of formula than normal (with the thickener too!). So far Cruz is taking them okay. She wants him to gain an ounce a day and go back in 2 weeks for a weight check.

Whew, that was a lot of information! I feel so good to finally have some answers! Everyone at ACH was so wonderful to work with. I can't tell you how nice they were. I didn't ever feel like anyone was rushing on to the next patient. What a wonderful experience. And as no suprise, Cruz smiled throughout the entire appointment. He is so happy to be going through so much. What a sweet baby. It brings tears to my eyes to think about how bad he feels everyday and how he just stays so pleasant. I can't imagine what he'll think about life when he feels 100%!

12 comments:

Cole Family said...

Praying for you and your sweet boy Amy!

Rachel said...

We will praying for happy Cruz!! At least you are finally getting some answers! Keep us updated!

Faith said...

My friend Sarah Bell directed me here and asked for prayers for you guys. Just wanted to let you know that my daughter, Ashton (also 6 months, born Dec 2nd) has CF. We visit the pulmonary clinic at ACH every month for check ups and we LOVE them. They are great and you chouldn't be in better hands. Ashton has NO symptoms of CF, we only know because of the newborn screening that they do now. I just wanted to you know that whether that is the case or whether it is only the feeding issue (which we will be praying for) you guys are in great hands... of course we are all in His hands, which are the greatest...

Casey Lewallen said...

Amy, I am definitely praying! Makes me so ready to start my Peds course in the Fall so I can learn more!:)

Stephenie said...

How wonderful to finally have some "real" diagnoses and answers! I have heard more and more people say that their motherly instincts trumped with the pediatrician said...good for you that you didn't give up! Will be praying!!

Michelle said...

I am so glad that you are getting some answers finally! We will be praying for sweet Cruz and for you! Keep us updated.

Mandy Bean said...

You got it! We will definitely pray. I'm so glad you had a good appointment and you are getting some answers. It will be like having a baby all over again when he's back to the "real" Cruz! If I can help during any of this (watch Maddox, feed the dog, etc.) I'd be glad to help!

Kim at Scarlett Boutique said...

What a relief for you to finally have some answers! Such a sweet baby, such a trooper!! We will most definitely pray for that sweet child, and you too!

alyssa said...

poor cruz has been through so much!! hopefully all of these changes will cure him! glad to know they were so sweet at the appt!

p.s. i tagged you on my blog!

Bridget said...

I am so happy that you are finally getting some answers! I hope the news keeps coming and is positive. Girl I have been so busy that I have not had time for blog land I promised to get pictures on and that hasnt happened yet. Maybe tomorrow :)

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