I've been sitting with the window open to start this post for the past three hours. I am thinking that posting directly from Braeden's room isn't necessarily the best option when I'm in an agitated emotional state. For the past 48 hrs B seems to make a step forward and then jumps back two more steps. He has alert 'Mr.B' times then is lethargic and/or miserable. They keep telling me this is normal, but they don't know Mr.B.
We do finally have a virus definition at least for the lungs, Rhinopharyngitis or as most of us call it, the Common Cold. The Common Cold has knocked my son clear off his proverbial feet for the last 5 days now with no sign of letting up. My best theory is that B was working on the UTI for some time and his immune system was shot because of it. The craziest part of all of it was that he has NO symptoms. He was seen by a Nurse, a Respiratory Therapist and a Physiotherapist only 10 hours before the retching started (which lead to the ER visit). No fever, no acute pain, just a wee bit of fussiness. How is one supposed to know with this kid? I like to think that I am well intune with B, that I know him and his signs inside and out but this one caught me completely off guard.
More than a few times he's perked right up and we've thought, "okay, rounding the corner now" only to have him slide backwards a short time later. I'm so concerned, stressed and frustrated with all he's had to endure over the past 5 days. It's not the staff really, they are just doing their jobs but there are times that I think that some of them just don't get it. Which I guess leads to the idea of how could they? I mean they do see it all down here and they know how this type of illness generally plays out but Mr.B is not the norm. I would chalk it up to those that have kids vs those that don't but we've had many Nurses over the past 11mths that aren't parents and yet they can get it. For example I will notice that his work of breathing is increased and I will point it out to the nurse only to be told that 'it's because he was moved', or 'he's stimulated with you here', or 'that's how it been for the past while'. Yet without fail an hour or so passes and what do you know, she/he notices an increased work of breathing.
I guess part of the issue I'm having today is that he's 'off'. He's sleeping the day away, which I know he's sick but he was more alert on his worst day two days ago. The hardest (worst?) part of being the "MOM" is that science doesn't always back you up. When the tests show he's 'good' but my gut says he's not. His sinus rhythm seemed off to me, I don't know why, I obviously haven't studied Cardiology but it seemed off. I asked the nurse about it and get all kinds of reasons from her (to which she is annoyed at me for even asking) and then I ask to have the Dr come in which then really annoys her. I ask the RT to hold off on giving him anymore ventolin until the Dr comes in to which I get more annoyance like I am completely overreacting. Now if you are to ask the majority of Nurses that have had us in their care over the past 11 mths (happy 11mth Birthday today B), I would think that they would tell you that I'm a pretty calm Mom who goes with the flow for the most part. I never assume to know more than the professionals (well except maybe some residents), I am however a great deal more qualified in the school of B. Oh how I wish I had a direct line to Dr.Fruitman (Cardiology)! She might tell me I'm wrong, that it all looks good but she'd also look into it first for me, not brush me off. Perhaps maybe I've just spent too much time here as I know I'm spent, emotionally and physically. It's not like I don't like his Nurse, she does really care, but she certainly is one of the ones that 'does not get it'. I would have thought that after three days of being with him she would but it doesn't seem the case. Of course it could just be me, but then again, maybe not (did I mention that I am sleep deprived and emotionally spent?).
Yesterday was just a bruise on my soul as I had to watch B be poked repeatedly and beside himself with pain and exhaustion. I know people have to learn but I'm tired of B being the learning model some days. He had an IV put in in the ER when we first came in and it was precarious at best however, it hung on and continued to work even after the second one they put in quit. Braeden had a good morning yesterday and was playful and smiling but as the day wore on he got more and more agitated. I repeatedly told the Nurse this wasn't his normal but when you tell someone that your baby really doesn't cry unless he's in pain they really don't tend to believe you. Again, it's not the 'norm'. Sometimes I just want to shout that Braeden is not in any text book (maybe I need to become one of the 'crazy parents'?) They decided to try to find a second IV sight as they didn't want to overstress the first one so the poking began. First his Nurse tried repeatedly, then another Nurse tried repeatedly then they let him calm down and 'rest' before starting over again. A third Nurse then went at it and after about the 10th poke I started to lose it and just had to sit by and watch with tears streaming down my face not knowing how my child can endure this. Finally in came the Intensivtist (ICU Dr.) with the ultrasound and she then did three more attempts with ultrasound guidance but everytime she got into a vein it would collapse. All I could do is just cry and tell B repeatedly that I was sorry. They gave up after that with the hopes that the foot IV (the original one) would hang on a few days longer. They then had to insert an NJ tube so that they could start feeding him again (in through the nose, down the throat, through the stomach to rest in the small intestine). Which now means his hands have to be tied down to prevent him from pulling it out (which he managed to get it an inch out so he's now on a short leash).
B continued to be upset most of the afternoon and into the evening. He hadn't slept all day and was beyond exhausted. His eyes would roll up into his head and he would sleep for 3 mins and then wake screaming and crying. The Dr examined him again and said to me that all the tests were showing her he was 'fine' but she did agree with me that he was not comfortable and asked me what my 'mom' gut was telling me (which impressed the heck outta me but coming from a pregnant woman I guess I shouldn't have been so shocked). I told her again he was in pain and that I didn't know why. His foot IV came to mind again but I didn't say anything just told her I didn't know. With an NJ insertion you have to have an xray done to make sure the tube is placed properly and she called me over a short while later to show me his intestines were full of gas. That would certainly be painful! With the ventilator pushing air into his lungs it means some gets pushed into his stomach too. I thought we had been circumventing that with venting his g-tube non-stop except when he got meds but apparently not. I agreed with her that it certainly would cause him discomfort but still felt that there could be something else. We went through a shift change at 7pm and his new Nurse came on and when she was assessing him she checked his foot IV and said, "oh". She then asked another Nurse to check it and they both agreed it felt a bit swollen but it was so taped up to hold it in place they couldn't be sure. She really didn't want to call it though and be wrong as it was his only IV site so I went over and ran my finger under the support and was horrified to feel how swollen and tight the bottom of his foot was. I told her to pull it, it was certainly swollen and immediately felt horrible that I hadn't personally checked it earlier even though I had asked his Nurse several times if it was ok (could be one of the reasons she's frustrated with me?). They informed the Dr and sure enough when the tape and board were pulled off his little foot was purple and swollen to twice the size. Yeah, that would hurt. My poor poor sweet baby boy.
Of course what this also meant is that the poking had to commence as he needed an IV for his antibiotics. Thankfully they had the right of mind to call the NICU and request a Nurse from there to come over. I told B that it would be okay that I knew Colleen (one of his Nurses from his NICU stay and who was with him over Christmas last year) would come. (I had seen her earlier in the evening when she came on shift and told me that I looked like I needed a hug to which I explained the non-stop poking he'd been through). Sure enough it was Colleen that came over and she looked him over and said she could put one in his scalp. I told her to go for it, I was past caring and just wanted a line in so he could sleep. So out came the razor and he got a 'NICU haircut' (I think they would agree with me when I say they are amazing nurses but they skipped the beauty school classes). Only two pokes later and he was good to go. I would say that it's partially because she's done maybe dozens of IV on him but I think it was in great part because she cared and coaxed it out of him. One final blood gas (poke to the finger and milk out the blood) and a few more adjustments/assessments and the poor kid could finally sleep.
As in typical Braeden style he can't let us get too comfortable and proved that with having his oxygen levels drop overnight. So back up on the pressures in the ventilator and up on his O2 levels they went. It has seemingly carried on into today as they've had to adjust his settings many times throughout the day. One step forward, two steps back.
And yet through it all what truly breaks my heart over and over again is when he smiles at me. He's been through more medically in the past 11mths then most people do in a lifetime and yet he can still smile. That's what gets me the innocence and forgiveness in his angelic smile.
As it is Thanksgiving weekend I do have many thanks to give. I would like to thank all of you for your continued support and kind words and our family for their non-stop love and help (and the promise to catch me when I finally shatter into a million pieces). Thank you to Jodi for feeding my household dinner the last two nights when I know you don't have a lot of time to spare in your own life and for offering your house for a Thanksgiving dinner tomorrow. Thank you to so much to Gina for taking the boys yesterday, to Scott and Colleen for taking them today and for Jenn for covering for tomorrow so that my sick Mother could have a reprive to heal herself. Thank you Amanda, Jen N and Lisa for offering to take them as well as any others that I've missed! Through all of this we are blessed with the love and support we have, it is because of that continued support that I can get up each day and face whatever hurdle is next.