Ashley's night times are proving to be the most difficult part for her at this time. During the day she seems happy and playful. A little worn out, but mainly her baseline. Its at night though where things have taken a turn.
From what we can figure out this current infection is not systemic. Meaning its localized inside the CVC and is not active in her blood stream. So...when we hook up her TPN each night we have to flush the line with saline prior to connecting her to the fluids. Within the next hour and for the following several hours she becomes symptomatic. Screaming. Crying. Trembling. Feverish. Very uncomfortable and in a very obvious amount of pain. This is happening every single night. There is no consoling her. No helping her. We can only sit near her bed and pray for her to get through it and to find rest as she drifts in and out of sleep. What we believe is happening to her is that when the TPN and IV fluids finish ramping up and achieve the full rate at which they will run over the next 18 hours they bring a rush of the infecting bacteria that is in the line into the blood stream causing her to feel the effects of the bacteria surging throughout her little body.
We are currently treating with an antibiotic for gram negative rods and we need to be locking the line for the 6 hours its not infusing with another antibiotic in order to kill the invading bacteria. The lock allows the medication to sit and dwell inside the walls of the catheter and work on destroying the bacteria. Unfortunately though we have lost blood return from her central line and this makes it impossible to draw out the medication after it has been dwelling inside the line for all those hours. Without the ability to draw it back out we can't use it and this is hampering our treatment and hopeful clearing of the bacteria. Usually when we lose the ability to draw out of the line we treat it with a dose of TPA which is best described as a clot buster. Think"liquid drano" for central lines. We have been doing this here in our home for the last year. When we contacted our pharmacy this week to get a dose we were informed that they can no longer get it from their suppliers. Our pharmacist spoke with Dave and shared that he believes they are making it for institutional use only at this time meaning hospitals are the only ones getting their hands on it. Which equals an emergency room trip for any of those patients who are living with central lines and are in need of the dose.
I'm sharing all of this information with you in order to ask you to pray about this today. Ashley needs the treatment for this line infection. In order to get the treatment we need to have blood return from her line. We will be attempting to get her in to the ER today with the hopes that they will be willing to help. We have gone in the past for this exact issue and its really a hit or miss situation. We've had the CEO of the hospital and one of the ER physicians work on a protocol to make this an easy thing to do for Ash. The bad comes in depending on who happens to be working today. When we were in this ER on April 1 waiting for transport by ambulance we were confronted with a very difficult situation. I don't want to go into all the details but I will say that there are people who work in this ER who have very little compassion or understanding toward Ashley Kate and the situation we live in with her. It is evident by their treatment of her and their attitudes toward us. It makes a hard situation SO MUCH HARDER when we have to go to them for help in saving her in these situations. Make no mistake...uncomfortable or not...WE WILL DO whatever we have to and put up with whatever personality we must to take care of Ash.
I've never, EVER, not one time, reported a nurse for ANYTHING. This act was so inappropriate, unprofessional, and hurtful, that it has taken me weeks and weeks to talk myself out of filing an official complaint toward her just so that her conduct would be addressed when she came up for review. In 7 years of hospital admissions and ER visits, I've never been angry, hurt but not angry, even when mistakes caused suffering and pain to my daughter. I realize that we are all human and errors will be made. Everyone is doing the best job they can and no one intends to hurt Ash.
In this case though, the act was intentional toward us, and it effected the next three hours of our journey. It was unkind and unnecessary.
I would appreciate your prayers today. We are going to try and get a hold of who we need to in order to make this a simple in and out visit. When you live with a central line and care for it for 7 years it becomes a "no brainer" to use TPA. It doesn't need to be a long, drawn out ordeal.
The drug shortages that are being experienced in our country are really beginning to effect the youngest of patients who are dependent on them for their survival. This is just one of the areas that it is hitting home for us. What should be done in our home can no longer be accomplished without a visit to the Emergency Room.
Thanks so much for your prayers. It is our sincere hope that once the line is functioning again and we are able to treat her appropriately that this bacteria will clear and she will improve.