Day by day (and stupid blog problems)

Things here change daily, and even sometimes ultiple times a day. Keeping Emily calm and comfortable is proving hard to do. She ended up having a reaction to morphine, which we thought might happen. We have added meds, changed meds, increased meds. She is happy at the moment, which is awesome. My blog is all messed up. It has something to do with the person who I paid to create the design and layout. Being in the hospital, I can't really work on it much so it will have a very basic design for now. Thanks for checking in on us!

Rough days

Emily has had two very rough days in a row. Emily has had a ton of coughing/gagging episodes that go on and on for hours. We have tried all her PRN meds and nothing helps. The only thing that helps a little is giving her some heavy narcotics to sort of knock her out. Mthere was a big team meeting last night about Emily. GI tells me the episodes are pulmonology, pulmonology tells me they are GI. I don't care what they are, or whose field they are, but she is miserable. It's not okay. Thankfully the Comfort Care Palliative Team here is amazing and standing p for Emily's comfort. Me are starting her on morphine for these episodes today. She has had an adverse reaction to morphine before, but it was 6 years ago. We are going to try a tiny dose first and see how she does. They are asking us some heavy questions. How far do we want them to go with her. What do we want if she codes. If she stops breathing. If her heart stops. If she needs a ventilator. It is surreal. Parents shouldn't have to answer questions like this about their 8 year olds. :(. Please keep Emily, and our family, in your thoughts.

Waiting for more surgery

Emily is inpatient again. She had the UTI last week, and the antibiotic they had called in was not the right one. By the time the sensitivities came back, she had landed herself in the ER again. She had a fever of 101.2 and was trembling and lethargic. Her urine is still positive, so the antibiotic was changed. This time her blood cultures were positive as well.

Here's the thing. We go to "First Class Big Huge" University Medical Center. Last admit, they transferred Emily to the sister hospital of this one, in the next city over. Same University affiliation but NOT the same level of care. It was awful. Her central line had been placed on Feb. 28th, and by March 3rd it was out of place. I had been telling them that the line was sliding in and out of her skin again, this is what caused the line to come out on Feb. 27th. So I wanted a different type of line, or a different type of securement. This is the fourth time a Broviac has slipped out of her chest without being pulled. Obviously, her body doesn't like this type of line and the internal cuff does not develop scar tissue to hold it in place. The surgeon at the sister hospital said he would be placing a Hickman when he took her to the OR. He specifically reminded me that her current (4 or 5 day old!) line couldn't be fixed because it had slid out of the skin some. They never, ever, ever re-instert a central line that has come out of the body. It is almost guaranteed to become infected. Imagine my surprise when she came out of surgery with not only NOT a Hickman, but the surgeon told me that he had re-inserted the line she had in. My jaw dropped.

Prior to her going to the OR, I had asked the surgeon about a port in place of a broviac. I was told no. He said that "First Class Big Huge" University Medical Center does not place ports on kids. Never. Not ever. I said I didn't believe this was true, that I knew kids at our regular hospital (not this little sister hospital) that had ports. He said they must have been placed elsewhere. Oh. *shaking my head in disbelief*

This leaves us where we are now. Inpatient at our regular hospital, because I refused transfer back to the sister hospital. We will never go there again. Her central line is infected, and has to be pulled. They are now saying "It may have been caused by the surgeon's actions, but we have no way of knowing that". Keep in mind that even after the surgeon re-inserted her line, it still continued to slip in and out with each dressing change.

I am so irritated. Had the surgeon done the right thing by either putting a new Broviac/Hickman in, or placing a port, we would probably not be inpatient right now. Yes, she has a UTI, but we could have continued to treat that at home. The bug growing in her blood is not the same as the bug growing in her urine, so it did not translocate internally. This is a different infection. So frustrating!

In better news, she is not too miserable. She is sleeping a lot, almost all day. She is not running a fever anymore, and the trembling has stopped. She is getting two different IV antibiotics for the next 14 days, so we are inpatient for a while. After that time, we will most likely be placing a port. Please continue to keep Emily in your thoughts and prayers. No surgery is easy on her, and her other issues continue to get worse. Her sleep study showed a lot of central apnea. Her neurological status is worsening. Her general instability is huge. This (undiagnosed specifically) mitochondrial disorder is kicking her butt. She still continues to smile at us, through it all!

Bad blogger .... bad blogger!

I just typed an entire long update and then my computer ate it. :( The short version is that Emily is home right now on IV antibiotics for a urinary infection. We should know later today whether we can continue to keep her home and treat the infection or if we will end up inpatient. It depends on some final labwork. Emily had a sleep study last week, to figure out the cause of her desaturating during sleep. I know she did it during the study because they had to keep calling the pulmonologist to ask what to do. We started out on room air, and then had to keep going up and up on the oxygen until she hit 2.5 liters. So hopefully the results will be in soon and we will know what to do next with our girl during sleep. Emily had a (second) muscle biopsy done a few months back, looking for a mitochondrial diagnosis. Unfortunately there was a lab error and the sample never got to Baylor University. We have come preliminary results which are pointing towards a COX10 Deficiency. This diagnosis fits Emily's symptoms, unfortunately there is no treatment or cure. Because the sample cannot be formally tested any further, we are drawing labs on Thursday for a whole exome study. They will draw blood from Emily as well as her Dad and I. Hopefully this will (FINALLY!) lead to a diagnosis for Emily. That's about all that's going on right now! We take this all day by day, and today's goal is to get good news from the lab and be able to stay home with our girl. We don't want another admit, again! We just had a week long admit for a central line replacement, because her line came out. We would love a long, long stay at home now. :)