Thursday, January 15, 2009

Mentally Collapsed After Today

Elias had the procedure this morning to place what was suppose to be a NJ tube (through the nose) but after failed attempts in each nostril they had to settle for OJ (through the mouth). We were not thrilled with this nor was his surgeon who had given a directive to be paged, but was not, when Elias' procedure began. They also conducted a simple saliva staining study. They placed a blue dye in Elias mouth, which he happily got everywhere on his face and hands. The point was to see if the blue shows up in the trach tube signifying micro-aspiration of normal secretions. This can show up instantly up to 48 hours later, so far nothing. We are not 100% decided to be happy with this, we are, but it means that we are leaning stronger towards reflux induced aspiration which requires surgery of some sort to manage. The real question here, is Elias truly aspirating at all still needs to be answered, and if it is not that, what is causing these episodes. We are not exactly sure what the next step will be or what they are interpreting from the results of today. We do know that if reflux proves to be the culprit they want a PH study, that would put us in for at least 3 more days because his prevacid medication would have to be stopped that long prior to the study. They also want to move forward with the modified barium swallow test, since the saliva test yielded nothing, but that will require the OJ tube to be removed to be effective, So as usual we have 2 carts in front of one horse.5268_5475836

You can just look at him and tell he is not feeling well :( taken this morning with my camera phone.

I found myself today in my most desperate advocating scenario for Elias. I kept my wit about me and remained extremely patient and professional. I did not lose control, although I think I might have had every right, but I am just not positive my view-point is not that of an over zealous parent. The isolation room we are in is the 2 patient per room variety, a first for us. We are generally isolated in a private room, but there were not and continues to be any available. They admitted a new patient into the room. I was meeting with our state social worker for our 90 day meeting. They had transported this infant from another hospital ER. I overheard the transport nurse telling the PICU nurse to use droplet precautions, meaning gowning up, wearing gloves and wearing a mask with shield because the infant had RSV. Without hesitation I popped out of my chair and asked if I just heard the letters RSV? They placed a baby with RSV in a room with a trach patient that is just completing further immune suppressant steroids. They explained that there was more than the minimum 3 feet between patient as well as the "curtain" (of apparent super power stopping any and every germ dead in its track). I was approached a few moments later by our nurse inquiring what exactly my issues were. I explained how our specialist do not have us even wait in the waiting room because of Elias increased risk to ANYTHING, so I was having a difficult time understanding how being in the same room with a child for an extended period was tolerable. They gave me the blah blah blah standard precautions and protection protocol. I told them I wanted to speak to our pulmonologist immediately. I wanted her to at the very least to be aware of the situation and told them if she is fine with this I am fine. She responded very quick to the page and agreed with me that it is not an ideal situation, however we did not have many options. Apparently the PICU and IMC unit that we are in has over 1/2 the population admitted for RSV, so there were not really any other places for us to move. They had one potential room, but we were told that there was a significant chance that the patient in the room would more than likely be placed on precautions for RSV by the end of the night. Not a very reassuring option. For now we are still in the room and thanks to our pulmonologist they are going to try and give us the first opening for one of the 2 private isolation rooms or a "clean patient roommate" if it became available. So now we have to be concerned with Elias and RSV, which for any infant regardless can be deadly so someone like Elias could really be in sad shape. He has received and continues to get the synagis RSV vaccine, but it is a vaccine designed to lessen the effects, not prevent.  Cross contamination between patient is probably the only way Elias will contract it from the other patient, so we are being very vigilant and watching everyone that enters the room like a hawk ensuring that they do not touch anything on our side of the room, including Elias with out regowning, regloving, hand washing, and using hand sanitizer, as if we did not have anything else to worry about. It looks as though Elias can easily have the need to be hospitalized for 3-10 more day depending, but with so much RSV on the unit the pulmonologist is torn between investing the time to get this right and keep us out of the hospital versus going home now without answers and the potential for another hospitalization in the very near future with Elias in worse shape. What do you do in a scenario like this? Either choice is filled with unpleasant and equal risk. At least I feel as though I did everything in my power to make my feelings known and as I told the PICU doctors, if my pulmonologist says she is fine with this I will not utter another word about it, but I knew she would not be and I was correct. We just find ourselves, as usual, in a very unfortunate situation that is unable to be rectified. Despite my efforts to keep my advocacy efforts discreet, it quickly became a public forum in the room with doctors and nurses debating. I felt sorry for the mother of this infant, so much so that once they left I went over and apologized. I explained to her why I was upset and pushing to be moved. I do not think she understood the potential severity of the situation (not the brightest star in the sky I learned during our conversation), the mother in her enabled her to understand my point of view. It certainly was not her fault her child had RSV, let alone assigned that room. She was worried about her child the same as me. I know I was right to advocate for Elias on this, but I am sure someone out there will explain how from a hospital point of view, they are justified and the risk is not nearly that awful. The bottom line that makes me feel as though it is wrong outside of the parental desire to protect remains that his pulmonologist's comfort level is not confident, but tolerable realizing there is little that can be done.  So with that we will put our faith in God and pray that Elias is protected and recovers quickly and definitively.


  1. Aw hell. I don't know how you guys do it. Trust your instincts. You did the right thing. As you do every time. Your heart and head tell you which way to go. Give hugs to Elias. He looks very very cute, if not exactly happy.

  2. Well I think Elias looks much happier than I would be if I had a tube in my mouth!

    Won't it be great when RSV season is over? Say...June or so?

    I've been very behind on Elias' posts- sounds like you guys have had more than your share of hospital trips lately. My husband have debated on many occasions if it is better to stay a few extra days to try to find some answers or tackle problems later. We've never fully finalized our opinion on this- sometimes it seems like a good idea- sometimes it's better just to get out before getting sicker. We just have to roll with the punches. I will pray they come up with some answers for Elias to get him feeling better- and safer as aspiration is a scary thing! Lori

  3. Well, Christ on a bike!!!

    I just don't know what else to say. Hang in there y'all.


    - becca

  4. Ugh... you know... I have come to realize that I am a lot smarter than I give myself credit for. If there is one thing that Kyleigh has taught me is that I am right... a lot.

    I am sure Elias has taught you the same! Trust your heart.

    Hugs and prayers,
    Amber Schmidt


Share your thoughts or questions

We appreciate you reading and following Elias' journey.