Monday, September 20, 2010

Another Busy Day

Yesterday, was another busy day. Vada's visiting nurse Cathy (whom we absolutely adore) came for her first out of three weekly visits. Then Vada and I headed out shortly after she left. We had to go to her pediatrician, Dr. Herr. Seeing him is a weekly must. We go to Dr H. at the beginning of the week, and then Peoria at the end. Both are suppose to be quick check in's. However, Peoria, has yet to be anything but quick.

Dr. H. walked in holding her file. It's become about half an inch thick now. Nothing compared to some, but never the less, a bit over whelming when it is filled with your six month old baby's medical information. He had his normal visit paper clipped to the top of the folder. You know, the one where they make their notes for that days visit, later to be filed in with the rest of them. He looked down and said "It looks like she's on new medications?" I replied with a "yep", and began filling him in our or latest medical concerns.

I told him how after a couple of weeks of being home from the first hospital stay (right after Vada was born) the Health Department called me with the same concerns that we were having now. Her MA count was abnormal. The Health Dept. wanted to run the test again because it was a rare thing to have come back on the newborn screening. They told me they'd run the test again and would contact me if this new test had came back abnormal.

They never called back so I just assumed that everything was fine. I had actually forgotten that it even occurred until Friday when we met with Dr. J.

Dr. H said that he doesn't remember seeing anything come in on it, so he left the room to go check. He came back with the results of the second screening that had been done. It was "normal". That in itself is a good thing. However, what is discrediting those results is the that the last two labs that have been done showed both to be abnormal, and to be rising. So, were not really paying much attention to that particular test. It could be an indication that something else is not right.

Maybe something is throwing her count off?

That's more my question, than one from a doctor and the truth is, probably not.

Dr. H. said the second test is probably inaccurate since the original one was off and now these newer ones are showing the same thing only with a rising number count for the levels.

Before leaving the office Dr. H1"s. office he gave me a copy of the results from the second screening and I plan on taking a copy with me on Friday to Peoria.

From Dr. H1.'s office we went to Trinity to get an X-Ray done of Vada's abdomen. She is experiencing more GI problems. It went from Duodenal Atresia, then the repair and weeks of recovery. Then she experienced over six weeks of blood in her stool, which was also pure diarrhea. For those issues we were dismissed by her pediatrician, then we were told that she has Colitis from her Neurologist. Now, the GI specialist says that that is not Colitis, which is a good thing and he should know one way or the other because this is his specialty. Plus, he is the one who ran all of the GI test's when she was last hospitalized.

I guess that misunderstanding,miscommunications and even misdiagnosis tends to occur more often than not when you have five different specialists treating one person.(Pediatrician- Dr. Herr-H1, Cardiologist-Dr. Bramlett, Neurologist-Dr.Jennings, GI specialist-Dr. Halabi-H2, Geneticists-Dr.Hoganson-H3). That's why I pay attention and ask questions. I am Vada's voice.

The bleeding has stopped now and we haven't seen any sign of it for over three weeks now. Every time she has a bowel movement I test it for blood, and it is always negative.This too is a good thing.

The new issue, is that she is having only one BM (bowel movement) a week. Well, up until yesterday that was the story. She went twice yesterday and already once today. (This is about to be a TMI moment, just an FYI) Her BM's are not quite "normal" if there really is such a thing when your talking about poop. They are very pasty, very, very stinky and not seedy like a typical breast fed babies would be. When she does go, she usually over flows the diaper, which she would because it takes her so long to releave herself, but there are no hard pieces.

She had a colonoscopy and endoscopy done when she was in the hospital. To me, it almost seems like she is holding it in. Which sounds weird, but I cant help but wonder how sore she may have been after the procedures were done.

Whatever may be the cause I am hoping that it is passing, and that yesterday and today is a sign that she is getting better. I am crossing my fingers and praying that she goes again a couple of times more before this Friday. If she does I think that I will have Dr. H2. hold off on the Barium enema. She goes through enough on Fridays as it is. She will still have to have seven or eight vials of blood drawn drawn that day, so if I am able to eliminate anything for her I will.

After the hospital we came home. I helped Jasmine and Kiliegh with homework. Then Kiliegh went to her dad's and Jasmine went to Karate. When Jasmine came home I had to take her to the library and wait in the car with Vada while she renewed a book. We then came home, had dinner, she studied more I bathed Vada and then Jasmine went to bed and I started to have a pretty upset stomach. I was up with Vada until 12:30 a.m. and then as soon as she fell asleep I did too!

Nights have been pretty long and once she is down I don't have much time to go to sleep because she tends to wake back up around 1 a.m. and then again at 4 a.m. Im lucky and grateful to my husband that I am a stay at home mom, so the lack of sleep can be made up for during the day if I really need to catch up on sleep.

Today, I have been on the phone with the Social security office, for Vada. I was hung up on three times before I actually got the opportunity to actually get something done. I have a phone appointment for the 30th of September. We actually may not be able to get her qualified because of Justin's income. That is just crazy to me, but it is what it is and anything, no matter the amount is something we didn't have before. It helps.

Dr.H3's office called today and confirmed Vada's referral. He will be seeing her on October 7th, as planned. The good thing about all of these specialist's is that they all share the same office, excluding Dr. B, he just shares the same building. So My trip is always the same and I don't have to worry about getting lost! Dr.H3 is actually from Chicago, but he comes to Peoria for clinics. Which is what Vada will be going to on the 7th.

My stomach is not as upset as it was last night, but I still don't feel "well". I think that I am just overly tired however, so I have been taking it easy today. Our car was hit well over a month ago, it was rear ended. Its been in the shop being repaired for over a week now and the body shop called to say that its ready to be picked up, so Ill be doing that a little later, and that's about the extent of my day. I am seriously trying to be as lazy as I possibly can be today.

I've received two phone calls and a nice FB message from three very special friends today. All were at different times and for different reasons, but all were equally special. Being secluded from friends and family takes its toll and even though it is worth it because of the cause, it still tends to get a little lonely. Sometimes, I cant help but wonder if I still have any friends left. So, thank you ladies, you know who you are. Your friendships are cherished and I love and miss you all very much!

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