6 hour dr.appt. day

So, Autumn's temp got up to 101.8 last night so this morning both James and I were concerned it may be a shunt issue now since she's needing oxygen at night, high breathrate, vomiting, and fever. So, I called her SB dr. and they agreed it could either be reflux issues like I first suspected or shunt issues or even aspiration/infection issues. They recommended we see what we could figure out at vent clinic and then we would see about getting the shunt checked while we are in town. So, we got to vent clinic at 11:00am. They do a first come first serve thing but the clinic actually does not start until 12:30pm. So, Autumn's bloodwork came out fine, CO2 levels were good, chest x-rays were good, trach aspirate was fine. So, they said they figure it is either the shunt or GI issues. They did double her prevacid dose and put her on Tobramycin (an inhalant) just to see if that helped some. Our phenobarb had spilled during the trip down so they had that refilled for us as well. They have a pharmacy (located in Rowlett) that delivers your prescriptions to your house. How awesome is that!! So, all the meds got delivered to my brother's house at 5pm. The new prevacid is white like it should be so I am praying that is one answer to our problems.

So, after being at vent clinic from 11am-3pm we head over to Children's hospital to get a shunt series and a CT scan done to check the shunt. So, by 5pm we were finally done for the day. Gage was with us all day long and did a great job. Now we are waiting for the results and if that checks out fine then we will see about getting a GI series done to see the mobility of how her formula is moving through her intestines. We may also have to see into another swallow stdy down the road as well but my be getting the GI done tomorrow. They can always put her on a med to help with the mobility. Shockingly, Autumn does not have a GI doctor but I think we will be getting one in her near future.

I also asked about Autumn not able to tolerate her PMV valve and they said to ask ENT about it next month since she should be able to tolerate it and there may be some airway issues going on as well. Really?! We wanted more issues because we just don't feel like we have enough. Sheesh!

I told James that days like this when I'm overwhelmed and tired that I just want to say to God...Okay Lord, we're tired of this marathon. Can you make this just a short sprint instead? Some days I'm just so sick of drs. and brainstorming ideas on what may be going on. I quickly remember though the reason we do it and that is for Autumn. She deserves every second of my tiredness from fighting for her to be well and get the care she needs. I know she was made for a purpose and she was given to us for a special reason so even though I feel like I can not take one more step at times, my foot will keep going forward as long as God allows for our journey to continue (hopefully that will be for MANY, MANY years). Oh, and mom called me this morning because Madison stayed home sick from school with vomiting. It never ends on this journey!