postcards from the edge......

Sorry to give you whiplash but here it goes.......So as I was feeling pretty good about Thurston's recovery in the last post, this has turned out to be a very very very long and stressful week. I was already pretty exhausted from staying up all night Tuesday because Thurston was not given proper pain management, but Friday when I went into to see him the doctor called me right when I was going into the hospital and told me there have been some setbacks. I did not panic.....I am finally at a point of where I am able to do a wait and see before I react when it comes to Thurston. I walked up to his room and lo and behold he was under lockdown, with full on gowns, masks complete with a huge STOP before you enter sign. I knew right away that it meant that Thurston might have an infectious disease. I still did not panic....I was actually pretty proud of myself, I really am learning I am I am. I put on all the garb and went into see Thurston and to wait for the doctor for explanations. I took one look at Thurston thinking maybe he would look like the plague but nope, he looked completely normal, looking around, his color was great, he was satting pretty high 90s so I kind of thought, "well whats all the fuss about". Apparently Thurston had a huge coughing fit that morning and it was so bad that they thought it could only be one of two things; RSV or Whooping Cough(pertussis). The doctor looked at me with somewhat grim eyes and I almost wanted to laugh but held back. I said, "um I really really am not worried, Thurston looks really good, in fact better than ever. The doctor looked pretty relieved but said that they had to take every precaution, do some more testing and that Thurston would be on lock down until the results came in. They put him on an antibiotic that treats whooping cough and started swabbing away.

Ok so far so good right? WRONG.....well Saturday I went in and Thurston was having a horrible horrible horrible day. He absolutely could not be consoled at all and AGAIN I had to keep telling the nurse and pretty much anybody that walked by that I was concerned, what can they give him for the pain etc. I dont want to get into to much detail but I was again ignored, pooh pahed, and I started to get very very very upset. I felt completely helpless especially after the doctor finally came in and told me she would give some gas drops to help with the gas...WHAT...he is in pain. Finally Chad and Viola came(this was 8 hours later) and I lost my shit. Chad held Thurston and I took Viola into the waiting room, called my mom and just literally lost it. I think everyone heard me. The nurse came out of the NICU to check on me and I told her I just couldnt take it anymore. My son was in pain all day and no one was listening to me. Finally we all went back into Thurstons room and the doctor finally came back and was able to witness what we were talking about. Thurston was crying at the top of his lungs writhing in pain. She finally prescribed some morphine and did some xrays to make sure that everything looked ok.

Thurston was awake the entire day. He couldnt sleep, thats how much pain he was in, I was livid. Then right after the morphine sets in he conks out in my arms and then Respiratory Therapy comes in to give him his treatment. They put this mask over him to do it and I asked them if they could just do the nebulizer(maskless) and they said it isnt as effective. And here is where I feel like a horrible mother because I let them put the mask on my sleeping baby hoping that maybe he was so tired that he would just sleep through the whole thing, but he then wakes up in a panic and writhes in pain and I could only guess that he thought they were suffocating him, at least I think that is what it must have felt like. I was so distraught. I just couldnt believe they were doing this, why cant they just leave my poor baby alone. I was going to stay all night but I havent really slept much this week. The nurse on last night was amazing and I did feel that after he fell asleep again that he was in good hands and she promised me that she would call me if he ever got even an inch next to inconsolable.

Anyway, I went in today and he looked so peaceful and well rested. He was in no where near the amount of pain he was in and I finally talked to the director in charge and he said that all of these things will be fixed. There is more details involved and I am just way too tired to go into it but needless to say it is the opposite of carpe diem. I would rather not seize the last few days. Nothing is worse than seeing your baby in pain and not being able to do anything about it, feeling like no one will listen to you, feeling completely and utterly helpless. Im ok with him in the NICU when I dont have to worry about his well being and if he is feeling ok, I am not ok if that is not the case. This is a very draining expereience and trying to remain positive after over 7 months is exhausting in and of itself. I am grateful but also Chad and I are starting to become completely drained from this whole experience and we are starting to unravel. We are definitely living on postcards from the edge.

PS...Thurston does NOT have RSV and no one in their right mind actually thinks it is Whooping cough although they still have him on lockdown until the final results come back on Tuesday. WAnna know what I think? I think he was in so much pain that he started to hyperventilate and gag and cough on all of his saliva and tears. I think he just went into spasm mode. I wish I was there just an hour earlier I could have told them that. For now they think the pain appears to be both from sharp sharp gas or cramps in his lower abdominal area, and/or just a lot of residual pains from the surgery. I will update later I really need to get some sleep.....