Oh where to start? Lucy has been “off” for a while; honestly, I’m not really sure she has been “back on” for months. Since being discharged just shy of three weeks ago, things have really been difficult for her, and in turn, us. She has had on again off again fevers but nothing over 100.4, well…except for the time she got her flu vaccine and shot up to 101.2, I will not go into detail about the lecture I received from Dr. R about sitting on that fever or any fever for that matter. The rule with any fever >100.4 in a kiddo with a central line is to first call Dr. R and have blood cultures drawn, then get admitted to the hospital for a minimum of two days, next start IV antibiotics while we wait for blood cultures to come back to tell us what if any bacteria is has grown in the culture, and lastly formulate a plan from there. The biggest risk with kiddos who have central lines is infection, any infection can be detrimental; therefore, you need to react to any and all fevers! Lucy’s fever is above Dr. R’s threshold.
On Monday of this week when our infusion company nurse came to do Lucy’s weekly lab draw, we all commented on how dusky purple Lucy’s mouth area and tongue looked. She looked quite pale ,and was having issues with balance and stability. Our infusion nurse was very concerned, and after taking Lucy’s blood pressure he observed that Lucy was having orthostatic hypertension, her blood pressures where changing more than 10% when she went from sitting to standing. Like I have mentioned, Lucy has been having episodes of looking “bluish” along with being tachycardic, but she has not appeared in any sort of respiratory distress. We have discussed this issue with Dr. R and Dr. F on several occasions and Dr. R believes that Lucy is dealing with vascular dysfunction as a result of her body’s autonomic dysfunction. Lucy is also anemic, her labs have been indicating this for a while, but it is more concerning now as we are seeing symptoms in her that could be a result of her anemia. After talking with Dr. R about Lucy’s symptoms on Monday, it was decided that we should try an IV bolus of normal saline to see if that would help to alleviate some of her symptoms, mito kids require a lot more fluid for some reason. We also discussed the need to give Lucy some blood. We ran fluids yesterday, and are still discussing the need to transfuse her.
My morning started off with a trip to our our ped’s office, she and I have been conversing regularly about how our girly is doing and what her most recent labs and symptoms possibly mean. She and I decided last night that it would be beneficial to bring Lucy into the office for her to take a look at her. Knowing that we were heading into a long holiday weekend and feeling
uneasy anxious about Lucy’s symptoms, I thought it would be worthwhile. While in her office, Lucy looked sicker than we have seen her in a few weeks, and her fever started climbing. Her autonomic dysfunction shined in all it’s glory when her forehead temp read 100.4 degrees and her feet 72 degrees, five degrees colder than the rooms temperature. Dr. F and I agreed that things were not looking good and called Dr. R give him an update. Without hesitation he told me she needed to be admitted.
Lucy and I headed home to grab our necessities for a few days, and make arrangements with my mom and dad who happen to be here for the week (what luck). Dr. R told me not to take too long as he felt that Lucy’s symptoms could go from bad to worse quickly. It took us a little over an hour to drive to the hospital today due to all of the holiday traffic.
When we arrived at the ER a few hours later Lucy was extremely floppy and not very responsive, I checked her TPN pump which had an error message on it. Immediately, I panicked and used her glucometer to check her glucose. She was very low, 32 to be exact, and was in trouble. I have not had to deal with an error on her pump like the one that it was reading, but I knew I needed to get in contact with our infusion nurse to figure out how to fix it so that we could get Lucy’s TPN running again. Lucy’s glucose drops quickly, within a matter of minutes, she really can not afford to be off her feeds. In a matter of a minute, what seemed like the entire ER staff was in with Lucy trying to get her glucose back up. I trouble shot with our infusion nurse over an outside line in the ER, because of course I could not get any cell phone reception in the ER, all the while watching the ER team bolus Lucy 60mls of D10 straight into her central line. Within ten minutes Lucy’s glucose rebounded nicely and things became a little less critical. I was able to get her TPN pump working again and we could then address the real reason for coming in today.
Cultures are done, labs have been drawn, we are up on the floor in a private room (prayers big and small get answered for us everyday). Lucy is running two different antibiotics in conjunction with D10 via her central line. Her TPN is being given when she is not running IV antibiotics.
Drew and I had dinner together at 9:00 after we got things settled for the day. Plans are being made to spend Thanksgiving with kiddos tomorrow. I will update more tomorrow, as I am exhausted and Lucy is sleeping.
Your thoughts and prayers are greatly appreciated.