1/22/2011

We’re experiencing a bump in the road. I got a call today from the ER doc saying that Maggies trach cultures grew out something else. We knew it was growing something within the 24 hours but just assumed it was going to be something that she always grows out. Well its not. She is growing a completely different bacteria and apparently it’s a rather large amount. So on top of the RSV she has another respiratory infection. We will be starting antibiotics today and are hopeful they will help. The doctor also told me that we should expect high fevers to continue until possibly the middle of the week. More than one doctor told me that we also need to know that this RSV is most likely going to last at least a month. So we need to really be careful with her and watch so very closely. The scary part is that she can still keep getting things on top of all of this.

As for how Maggie is doing, she is pretty sick. Her fevers are still quite high and her oxygen continues to get worse and worse each day, seeing it in the high 70‘s while awake, that was last night. We struggle with keeping oxygen on her while awake because it goes over her trach and she hates it and rips it off. She breathes so shallow and fast she is just exhausted. She has been retching, wheezing and coughing so much. I wish she could just get a break. She has also started the trend of losing weight again which is really scary. She is 14 lbs 6 oz and looks really terrible. We think she was experiencing some form of delirium last night because she just kept waking up and signing to brush her teeth over and over. I lost count of how many times we let her brush her teeth.

We have had many conversations on the phone with her doctors. They are very concerned for Maggie. We (Sean and I) are hopeful for Maggie. She has shown us time and time again what a strong little girl she is and how she surprises us all with everything she is faced with.

I will quickly update on Taveons test results. The biopsies all came back normal. The ph probe came back abnormal. Apparently Taveon has some really really severe reflux. But it’s a different kind of reflux and that is why its not showing up on the biopsies. Its so bad that they said that the reflux comes up his throat and just sits there for a really long time. He never clears it. So they are not sure whether he is aspirating it or not. He has been on meds for reflux before but we never saw results with that so we will be discussing what we will do next for him. He also has a swallow study in Feb and another appt with his ENT so we can discuss whether this is playing a part in why he is so sick all the time or not.

Thank you all so much for all of the thoughts and prayers. We really do appreciate all of the love that has been shown to our family. We are also so grateful for all of the dinners people are bring to our house. It really does help so much. Sean and I can barely think straight. While trying to keep the other kids busy and happy and Maggie happy, suctioned and comfortable. Luckily the kids got a break last night and got to spend the night at my moms. I heard they are having so much fun! They really needed that. As for all the people that are asking what they can do to help. We are so appreciative of those offers. I can’t think of anything at the moment except for continued prayers. I think that is the most important right now. If we do think of anything I will let you know. Thank you so much!!