Thursday, July 24, 2008

Congrats to the Hinton's and Hastings

This week has been a big week for babies in our lives! Little Carly Hastings (6 months) had her open heart surgery on Wed. It looks like everything went well. She was in surgery for 4.5 hours, 89 minutes of that was on the by-pass machine. She has already been taken off of the vent, and the doctors seemed to be pleased with her progress (from dad's email). Carly's parents have been so strong. Please keep this family in your continued prayers.

And Ashley and Andrew Hinton welcomed their little girl Lucy into the world today! Lucy is a gastroschisis baby too!! The Hinton's live in Atlanta and we have been emailing buddies (mom, ashley, found the blog). Lucy is such a blessed little one to have parents that have done their research. Please keep Lucy and her parents in your prayers also. Dylan and Lucy are going to be great friends when they grow up, I just know it! In the meantime Lucy needs your prayers. We all know what this journey in the ICN/NICU is like with a gastroschisis baby. Such a roller coaster. Only prayers can heal this baby faster and allow this family to stay strong and sane.

Congrats to these two families. Our thoughts and prayers are with you!

Friday, July 18, 2008

They scheduled a Test!!

We got a call this morning to schedule the Breathe Test!!! It is for Tuesday. Apparently Dylan must fast after she goes to sleep. We will go to the hospital at 8am. She will have to be there all day and have to breathe into a mask every half hour.

We have solid poops right now, which makes me think we missed our window. I doubt we will find out anything! But, at least someone is doing a little something.

Thursday, July 17, 2008

Trip to the GI

So we went to see the Phoenix GI on Tuesday at 3:30. Talk about a "makes you want to pull your hair out" appointment. We have seen this doctor probably a dozen times since we have been here. At probably our 8th appointment she introduced herself to Casey and said "Hi, I'm Dr.XYZ, I don't think we have met yet." Casey has been at EVERY appointment. So this kinda weirded us out. I know they are busy, but seriously, make a note in the chart. All 12+ appointments we sit and have to go through Dylan's entire medical history. Why every time? Don't you take notes? Can't you remember the gastroschisis baby that you get calls on every week? Apparently not.

So, the first thing she says to us is "So, why are you here?" P.S to all those doctors out there, not a good thing to say to a parent. READ YOUR CHART!!!! When you make an appointment you get asked 50 times why you are making the appointment. You have had phone calls from another doctor. Can't you take 30 seconds to read something before you walk in our room. Saying "So, why are you here?" gives us very little faith in you. It makes us seem like we are just a number. Casey and I just looked at her dumbfounded. We were told last Thursday that she was on board with admitting Dylan into the hospital. And then she had the gaul to ask us why we were there. AHHHHHHHHHHHH!!!!!She told us that our pediatrician told her we were having a hard time getting ahold of her. No, she just takes 2 weeks to call the Pediatrician back. And the last time we were at GI (1.5 months ago) she told us she was looking into a slew of tests to run on Dylan and that she would get back to us as soon as she knew anything. This was 1.5 months and we hadn't heard a darn thing.

So, in usual fashion with out GI appointments we go though every poop Dylan has had in 8 months. What she eats. Yada Yada Yada. And I am not kidding you when I say this. She must have asked us 18 times if Dylan is throwing up or refluxing. And all 18 times the answer was the same. "NO!" Dylan was a big refluxer in the past. So, I know when she is and isn't. And she hasn't been, which I thought was odd too. But, again, we say No all 18 times. Why must she ask 18 times? Does she think after 15 I will change my mind? I am beginning to think that Reflux is the GI version of ADD or Autism. You know that FAD diagnosis. It is what all the cool docs are diagnosing kids with. Its the diagnosis of the week. I feel like that is what Reflux is. They just don't like the answer that Dylan isn't throwing up!

I handed her the email I received from UCSF with the lists of tests they were suggesting. She responded with she thought they were a little knee-jerk. KNEE-JERK? You don't think wanting to put a child in the hospital before running ANY tests was knee-jerk, but wanting to do an ultrasound is knee-jerk? You have got to be kidding me.

Then I told the doctor that I wasn't so concerned with the poor weight gain. Yes, she isn't gaining weight, but she isn't loosing any. That seems like a positive in my book. My concern is the pain that Dylan is in. Why is she is in "can't breathe it hurts so bad" pain? Ya wanna know what she said to this? "Well, What do you want me to do? Admit her into the hospital? I can do that!" This is when I start to crack my knuckles and start mentally stretching my legs and prepare to Ninja kick her in the head!!

After I think 2 hours in the appointment she walks back out to get her prescription pad walked herself back into the room with her tennis shoes that have springs as heels (total fashion faux-pas), sat herself down and asked us if we had any questions before we parted. I said "Ummm ya, what is the plan?" She looked at me like I was an idiot. Well, we have been here for 2 hours and we knew nothing. She then told us she guessed she could do blood work on her, but that we shouldn't expect any different results than we had had before. Oh, and that she needed to be on Zantac for her Reflux. Jesus, Mary and Joseph, for the 19th time she doesn't have REFLUX!!!! What about the XRay? The UltraSound? The Breath Test? She said she would look into all those AGAIN, I doubt we will hear back from her.

So needless to say we are officially looking for a new GI. I can't live with this any more. Dylan shouldn't live in this pain.

But, here is my prediction. We go back to the Pediatrician on Tuesday. At that point Dylan will have gotten through this funk, like she normally does. She will have gained weight, we will have solid poops, and the pain will have subsided for a couple of days. The doctors will think they have magically fixed her and that nothing needs to be done. Then is 4 more week the same thing will happen, she will stop gaining weight, be in pain and it will take them ANOTHER 6 weeks to figure out what is going on. And by the time they try to run a test, she will be over that hump again. And for the rest of our lives I will be going crazy from doctors not knowing what is going on with her.

Can you tell I am exhausted and frustrated yet?

Tuesday, July 15, 2008

UCSF is back in the game






















So as of last Thursday the doctors here wanted to admit Dylan back into the hospital. Casey and I said "NO"! Even though she hasn't gained weight in over 1.5 months, she is still our happy little Dylan. They didn't have a game plan once they put her in the hospital. Nor have the run ANY tests. So what good would her being confined to a small bed do? Nothing if you ask me. She would do much better having tests done and being able to go home at night. She is just small. No infection. Nothing. Pain, but why don't we have blood work done, maybe an XRAY? Why do we have to go 1.5 months before we are even suggested to see a GI doc? Last week I was asked what UCSF thinks off all of this. What do I know? I can't read minds. They are the doctors, shouldn't they be talking to the experts back in SF? Not the mom! So, I called UCSF last Thursday and talked to the surgery clinic and let them know that they were thinking of sending us back to UCSF, but that no tests have been run. By 10am Friday morning I had a phone call from the Pedi Gi at UCSF talking me through everything. Within an hour I had a list of tests that they would like run. Why has it taken Phoenix 1.5 months to even make a move? Agghhhhh Thank GOD for UCSF!

Wednesday, July 2, 2008

When will someone have an answer?






So at Dylan's 6 month appt the doctor thought we could go until her 9 month check up for the next appt. That made me nervous. We didn't have much weight that we could afford to lose. And 3 months seemed like a long time to not know if we were going in the right direction. So we opted for a 7.5 month check up, which ended up being almost an 8 month check up (can you believe it has been 8 months?!?!). We have had a rough time for about a week now. Dyl hasn't really wanted to eat, which I just attributed to teething. But she is ALWAYS starving. She went back to waking up 2-3 times a night just famished. She would down a bottle in no time flat. We are still eating our normal 50+ ounces a day, and now it is at 24 cal+.


We always start off our appointments with a weight check. That sets the tone for the appointment. I have learned to not have any expectations. It seems when I am thinking everything is going well, we find out it isn't. So back to the weigh in. She had only gained 3 ounces in 3 weeks. Typically babies should be gaining between .5-1 ounce a day. my big concern was that she had just had a 5-6 ounce bottle right before the appointment. So has she even gained anything? (if you get grossed out, skip the next paragraph)


Her poopies are SOOOOOO huge and SOOOOO stinky. And not food stinky. I know what broccoli and pear diapers smell like. This is "something inside of me is rotting" stinky. And she is having frequent and large ones. People actually leave the room gagging when she toots or poops. Poor thing is gonna have a hard time in school!! The stinkiness and the constant change in consistency cues the Dr.'s into 2 things. 1) malabsorption 2) bacterial overgrowth. If you look at the outside of her tummy you can see she is visably larger and dialted on one side versus the other (the side where her jejunum is).


She is still our happy girl. Not as active since she doesn't feel well. And she is sleeping alot more. She isn't AS giggly and playful as normal. But by no means a hard baby. It just gets frustrating that we gain gain gain. And then the brakes go on. This might just be the pattern with her. Which is fine. It just scares us when the doctors start to get concerned. So, we are in a holding pattern right now until all docs can converse and get on the same page. The GI doc is out until early next week. My guess is they are going to want to treat for over-growth. Which I am fine with, but I would like to make sure that is really what we are dealing with so we are not shocking this poor little girls body with any more antibiotics. She has been on it too many times in her life. There is a breath test that can detect overgrowth. We just aren't sure she is viable for it due to her age. I will do everything in my power to make sure we know what we are dealing with before we give her any more meds. She only has so much bacteria in her body, we don't want to kill it all if we don't have to. We all need a certain amount of bacteria to keep our bodies healthy.


I will let you know as soon as we know something. Oh, people have mentioned her metabolism before. As in maybe she has a super fast metabolism and that could explain it. I asked the Dr. is a BMR test was a good idea. And she just said "Ash, lightening doens't strike twice, besides Dylan is developing too well to have metabolism issues". Not sure what that means, but there ya go.


Oh, and Dylan think she is Mogali from the Jungle Book. She is crawling with her toosh straight up in the air and on her hands and feet. Just like Mogali did in the movie. She might have learned it from all those times her Daddy and Uncle Jay watched the movie. Who knows!!


Dyl is such a blessing and such a doll. Thank you for your continued prayers and support!