Saturday, February 9, 2008

What Good News???

The good news I wrote about in our last entry faded very quickly this week. On Thurs. Charlotte had a "well-baby" check up at her pediatrician's office. We discussed many things, especially the new medication we had started for Charlotte's delayed emptying, and also talked about the probability of the G-Tube surgery. Our pediatrician still feels that even if we get Charlotte's tummy to empty correctly that we need the G-Tube, and she is not convinced that she will get much better with the Reglan. Her problems are more than just having a tummy that is too full. Charlotte had also had a fever since the night before, but have no fear, it was only a cold, no ear infections, no sinus infection, just a fever...few....

Now on to the real kicker, and I mean KICKER...

We then discussed my apprehension about Charlotte's blood pressure, and how I have been feeling that it is not being managed well and I asked our Dr. for the name of another physician for a second opinion. She felt I was definitely entitled to this, and wanted to set us up with a Nephrologist, and to call and speak with Charlotte's cardiologist herself. I was ok with that, but also asked that her blood pressure be checked in the office. And....drum roll please.... completely quiet, no crying, no screaming.... 118/80. (for those of you who do not want to look at other posts and see what normal is for a child her age, the top number should be well below 100, more like 70-90. So, she said she was concerned and called our cardiologist. I go home...

Then, the cardiologist calls me. Apologizes....for brushing me off and not addressing the problem as he should have. He explained that his intuition was telling him that her blood pressure would improve, and I responded that "I have intuition too, and mine has been telling me that there was a problem for a long time now". He humbly said that he felt bad about the situation, and said we needed to address the problem now. But, he would have to admit us to the hospital to start the new medication because it is so "potent" and could bottom out her blood pressure. (Meanwhile my mother was on her way into town as we scheduled weeks ago to spend some time with my sister and I, only to be called and say once again, meet us in the hospital, where we have already spent so much time). I called Chris right away, he came home, and once again, we packed our things and headed to Hotel St. Johns for another nights stay.

The plan was to start the medication when her blood pressure was above 100. Then, he could justify the new medication. But, the first 3 blood pressures that we got were 85, 98, 97, and the next 3 they could not use because they were in the middle of the night, Charlotte was DOG TIRED from all of the poking, proding, FEVER 101.???, lack of sleep, and fear from whatever the heck they were going to do next. (Her parents were a bit grumpy too). Finally, at 5:30 AM after maybe 1-2 hours consecutively sleep, they got a blood pressure again, NO screaming, NO crying, at 126!!! Much worse than the one before. So needless to say, they started the new medication, followed by Charlotte's favorite.. Blood pressure checks every 1/2 hour for 2 hours, then every hour for 2 hours. HOW WAS A GIRL TO GET ANY REST???

Burnin' up with fever...but not why we were there

The plan didn't work, her pressures didn't come down low enough as expected. We were still getting readings around 105, 106, etc. So, we doubled her dose of medication, which also bought us yet another nights stay at Hotel St. Johns.

Now, let me say that our second night was 100 X's better than our first. The nurse that took care of us the second night was SOOO much better, listened, and was organized. What a difference. They were checking her blood pressure even more frequently, and somehow, we ALL got more sleep than the night before. Thanks to that nurse, we didn't have to wring anyone's neck.

Well, throughout the night, her blood pressure resumed around the upper 90's. Better than 118 & 126, but still not in the 70-90 range that they want. And, keep in mind this medication is supposed to be "potent"?? Not for Charlotte.

The conclusion this morning was that we still may need to increase her dose of the new medication, and she is staying on the one she was already on, and that was increased as well. They still don't know WHY this is happening. The original theory of some type of injury to her kidney during surgery is out the window because all of her kidney function tests are coming back as normal. They think that her autonomic central nervous system is responsible for this but are unsure why or what triggered it. That basically amounts to "We Don't Know". However, they did let us go home today, knowing that we are going to follow up in the office on Monday, and begin taking blood pressures at home and possibly still increase her medication one final time. (that is the highest they can go with the medication).

With this stay, we also acquired a new endocrinologist, nephrologist, general surgeon at St. Johns, and are to keep our appointment with the general surgeon at Children's on Thursday. The Pediatrician can't decide where she wants us to have the surgery done (it seems as if it is a definite now, and I wouldn't be surprised if it took place within the next few weeks). The new endocrinologist has shed some light on some lab values that are pointing to the fact that Charlotte is malnourished (which we knew). I think it must look pretty bad for her to tell me that Charlotte's bones are "starving". Her words, not mine.

All in all, we are exhausted, but thankfully home. The lack of sleep, hours spent trying to entertain a 16 month old in a room she can't crawl in, confined to your arms, lap or jail cell of a crib, (thank you Baby Einstein) has taken its toll, not to mention the emotional exhaustion of all of the problems we are facing right now. There were very few ways to keep her entertained, and on top of that she felt like crap because of the fever and all of the medications we were shoving at her right and left. You may be surprised to see her smiling in the pictures below, but honestly, that is our girl. She is one tough gal, and through everything, found ways to melt my heart with her smiles and affection to us all. That sentence makes me tear up as I think of how strong she is, and how much we have had to test her strength. But, we discovered that a long time ago didn't we? I know her strength was given by God, but your prayers also renew her each and every day.

Cuddling with her pal Mini Mouse

So the next few weeks are uncertain, but I think the one certainty that has come from all this is that she needs help... and finally, I feel that the Dr.'s are listening to me. We have their attention now, but it makes me so angry that she has had to suffer because they wouldn't listen. I only ask that you please add them to your list of prayers as we do need their guidance and wisdom.

We will keep everyone updated as the week goes on. Thanks for caring for our family so much.

The Hawns

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