Gesina needed a redraw of a blood test for the neurologist so I went to my local hospital to get that done... 4 needle pricks later and we still had no blood for the test. The blood clots before they can test it so I had to go back today (a week later) to try again for the third time. Thankfully we got it done but it's not easy holding your 4 month old down as she is used as a pin cushion! We are both exhausted tonight :-(
For last week's GI appointment, we've had a few tests, are getting a few more and upping more of her meds. I'm going to start worrying about my little girls liver if we keep pumping her with so many meds but rest assured, many of her blood tests are assessing liver function. One test Gesina had last week found her digestive structures are all in the right place. A more in depth test was done today that considers the function of these structures. In the meantime, we are upping her Prilosec and giving it to her 2 times a day (this means my poor baby gets meds via syringe 6 times a day). We are also sticking with the hypoallergenic formula but adding more oatmeal because she throws it up every night. Since adding more oatmeal... she still throws it up every night and sometime during the day too. She seems to like the more oatmeal (I call it her sludge) but she has lost an ounce of weight since two weeks ago. Sigh. On Thursday if there is no improvement to her irritability and/or vomiting, I switch to a more "hard core" hypoallergenic formula that you have to special order from a pharmacy. I had no idea having a child would be THIS expensive!
As for neurology, I haven't seen any signs of seizures since we changed her medication amounts. She doesn't rage as long as she did before though. The "raging" is my term, not a doctors. When Gesina goes into a rage, she seems mad. This is an observation that I, her babysitter, and even a neurology nurse have independently made. She screams in such a way that is nothing like sad, pain, or boredom... it sounds like RAGE! I just want the pain or rage or whatever makes it so she doesn't smile or interact much with me to go away so we can start to enjoy ourselves... that's all.
I don't know if this will help you, but both my girls had issues, The flap that opens and closes to keep food in, wouldn't stay shut. So everything they took bottle wise rolled right on out. After feeding, we had to hold them upright for 45 min. I also kept their bed raised on one end to help with that. We had the walker as low as it would go, put a pillow under it one behind them and one in front to help with that too. I'm so sorry you're having all these problems, I know it's wearing and extremely tiring...:( Hopefully these tests will give some insight.
ReplyDelete