Weekend overview...

Elaina has had a pretty rough weekend, she's not home yet. She's still having problems with throwing up. Because her feeds are going into her small intestine, there is nothing in her stomach but acid and saliva, so it's pretty yucky stuff that comes back up. I asked the doctors to adjust her reflux meds for her current weight, so hopefully that will make a difference soon. Also, I can't remember if I'd said how congested she's been. This is complicating things also. The resident didn't really take it seriously, but Elaina really seemed to be struggling on Saturday night. We had the most awesome nurse that night, her name was Wendy. She could tell that Elaina was having a hard time and so she called in a Respiratory Therapist (RT) to take a look. He said that she was moving air well through her lungs, but sounded congested in her upper airways, so he did a deep suction and a nasal wash. I felt so bad for her, because it didn't look pleasant, but there is not much else to do for a kiddo that can't blow their own nose. To those of you that are unfamiliar with this procedure, the RT takes a suction hose (like the dentist uses on the saliva in your mouth) and sticks it into the nose and sinus. Deep suction means that it goes all the way through the nose to the back of the throat. To understand how far that is, measure from your nostril to your ear. Ouch. Of course she cried the whole time, poor bug. At least it really seemed to help her out. The nurse had the RT come in a few more times through the night and suggested that it continue through the day Sunday. Sunday was hard too. She had a low grade fever, only 99 something, but it would come and go. She wasn't able to really get any sleep either. She would fall asleep for a 10-20 minutes and then wake up whimpering and crying. Her heart rate was in the 180's. Her baseline is usually in the 140-150 range, so to be around 187 all day was really high for her. Her respiratory rate was also very high again, up in the 70's and 80's. By mid-afternoon she was starting to look "dusky", she had a bluish tinge to her skin, it was darker around her eyes, nose and mouth. Her oxygen saturations still looked good, so to be blue in the face was kind of concerning. Our nurse paged the on-call resident to come and take a look. Elaina was sent for a chest x-ray and blood work was requested. I talked with the doctor and asked her if putting Elaina back on the "blender" might not be indicated at this point. After all, she responded very well to it last weekend when her heart and respiratory rates were elevated. She thought that was worth looking into and called for a consult with Respiratory. Luckily, the same RT that had suctioned Elaina the night before responded to the page. He said that it was a great idea, and he immediately set it up and then suctioned her out again. It was like a miracle for my sweet little girl. Within 30 minutes she was resting peacefully and her coloring had improved. Her chest x-ray looked okay, there were a couple of areas that looked cloudy, but I was told today that was probably just a little extra fluid in her lungs that will go away with the lasix they are currently giving her.

Oh, I need to go off on a tangent for a moment, but I promise it will lead back into current events. I have not been very happy with one of the Resident "doctors" assigned to Elaina. This woman was lousy, I was not at all impressed with her. Her goal this last week has been to get us out of the hospital. Not to treat Elaina. She's the one that came up with the not so brilliant feeding plan that didn't work. She also kept insisting that "babies spit up", so why was I making such a big deal out of it? Grrrrrr. If Elaina was only spitting up, I wouldn't be making a big deal. It's only a big deal because she chokes and turns blue whenever it happens! Well, when she was doing her initial assessment of Elaina, she wrote down all of her medications and then input the information into the computer as orders so that the pharmacy could fill the medications as needed. Somehow, she missed the Prevacid. It was in the handwritten notes, just not in the computer. So for 5 days, Elaina didn't get her Prevacid. This is not good for a kiddo with acid reflux. Anyway, I caught it on Saturday when I was helping the nurse administer the medications through her NJ. I asked where the Prevacid was, and the nurse said "She's not on Prevacid..." Hmmmm, wonder why she's still throwing up stomach acid..... That's been fixed now, so hopefully Elaina will be able to control the acid reflux a little better. Also, this "doctor" wrote discharge orders for us on Saturday and ordered a suction machine for me to have at home. The idea behind this machine was so that I could suction out Elaina's mouth and nose if she threw up. I would just use it occasionally, for minor suctioning, because it's faster and more efficient than the bulb syringe. Well, when Elaina was having her problems Saturday night, this doctor said she was still planning on sending us home Sunday and that I (mom) could suction Elaina whenever she needed it. The nurse told her that RT was having to deep suction due to congestion, and this woman basically insisted, "That's okay, Mom will have a suction machine at home that she can use if needed." This really ticked off the nurse. Wendy told her that she didn't even feel comfortable doing the suction, she had called in a respiratory therapist to do it. Why did the doctor feel that Mom could do this? The final straw for me was after all this, I asked if Elaina could get some Tylenol and this doctor told me "NO" because she would really hate to mask a potential fever. Nevermind that Elaina cries every time she coughs. Nevermind that her throat is raw from the insertion of the NJ and refluxing stomach acid. She's just a baby, so her comfort didn't seem to matter. At this point I asked to talk to the Attending Physician and told him that I didn't want this resident working with Elaina any longer. I really gave him an earful! He said that he would make the change for me and he did by the middle of the day Sunday. What a relief. This is why we got the on-call resident Sunday night. I loved her, she was actually Elaina's resident after her RSV and she was doing her rotation in Neurology when Elaina had her seizures, so she was VERY familiar with Elaina and her history. It was her last night in this rotation, but she said that she would recommend an awesome resident to start on Monday.
So now we're to Monday (told ya the tangent would lead somewhere!). We did get a really good resident assigned to us now. She was on the "team" last week, and didn't agree with how aggressively the other resident was trying to get us home. She told me this afternoon that she had taken the time to read through all of the notes from Elaina's last 3 hospitalizations and that she wasn't even going to talk to me about Elaina going home at this point. She said that she just wants to take it one day at a time and let Elaina set the pace. She also wrote an order for Tylenol as needed. What an answer to prayers. Finally, a resident that cares about the patient and is willing to treat her as an individual, not according to the textbook. Elaina is still on the blender for oxygen. They are weaning her very slowly, 1/2 liter every 6 hours. If she struggles with this and her heart and respiratory rate go up, they will bump her back up. She did very well with the first wean this afternoon. I was holding her and she seemed to sleep very peacefully the entire time. She is throwing up less, which is a good sign that the Prevacid is working again. (It takes a minimum of 3 days for it to start working, and since it was stopped for 5 days we had to start all over again with it.) I'm praying desperately that she will continue to improve. She really looked a lot better to me today than she did over the weekend. Her little body is working so hard to stay alive and to grow. She is getting close to her next surgery, we only have a about 1 1/2 lbs to gain until she can have the procedure done. I was told after her last surgery that she would really struggle in the weeks leading up to the surgery, so I guess that's where we are now. Elaina is supposed to see her cardiologist on Thursday. If she's still in the hospital they will arrange for him to see here there. I will know more about it later this week. What an exhausting weekend it's been. Ben is super glad to have me home tonight. It's really hard on him when I spend so much time at the hospital. I know that Ben needs me, but I feel really torn. Elaina needs me to speak for her and to hold her. If I'm not there, then who knows what will go wrong! Ugh. Somehow I will muddle through and come out stronger on the other end! :)