To say this has been a hard week would certainly be an understatement but what it also has been in an eye opener in many ways. First off I knew that our lives were going to be spent in and out of hospital with B but never in my mind did I let myself believe that we could be going to a critical condition again quite so soon. Secondly, I am now terrified, TERRIFIED of a repeat of this when we had no real symptoms to follow before hand. Thirdly, I need to somehow learn to 'teach' the Drs, Nurses, RTs and fellow staff in the ICU about treating complex kids like Braeden. That sounds completely pompass on my part, I know, but the staff in the ICU are a trauma team, treat the here and now which is good, it is their job. But I would like to somehow learn to get through to them when treating chronic kids like Mr.B that they truly need to take more of a holistic approach to treatment. Maybe that's not possible, I don't know. Treating the 'here and now' is good as long as you understand how we got to the 'here and now' in the first place.
The most brilliant thing that one of his Nurses said to me is that she had just gotten back from her first Mat leave and that all of a sudden, 'difficult parents' were actually just being PARENTS that were scared and concerned for their child. Imagine that! Now again, I don't think you need to be a parent yourself to be able to understand or have a good concept of what a parent is going through as we've had many, many caregivers that are not parents but they 'get it'. It is interesting this trip down here because I feel as though I am one of the 'difficult' parents because I question things. Funny thing is though I have questioned things since the beginning. I clearly remember speaking up during rounds when B was just a few days old in Foothills and the the look on the Dr's face as he turned to look at his staff then at me that he was SHOCKED I would want to weigh in on an opinion. I am B's voice and I will be long after he can speak for himself, it's my job and I take it very seriously.
Braeden's heart rate has been irregular at periods over the past few days (mostly while in deep sleep) and the Nurses's and Dr's are not impressed when I repeatedly point it out as they have already told me it is 'normal'. It is funny because yesterday I told his Nurse while it might be 'normal', it's not Braeden's 'normal' to which she replied that 'it's not like he's always on a monitor'. She's right, he's certainly not anymore but lady, I did watch him on a monitor for 7 1/2 months straight...I've got some experience here. I'm trying, trying to be patient. I know they are here to help but nothing annoys me more than when the Dr's or the NP comes into his room to discuss something (like the heartbeat) they address the Nurse, not myself and speak in 'Dr talk' not thinking I understand. I may not be a Cardiologist but I do know what a P wave, T wave and QRS are thanks! I finally got so frustrated yesterday after being placated again after watching him miss beats that I marched upstairs to Dr.Fruitman's office to see if she was there. She was not unfortunately (I knew it was a long shot) but I did leave a message for her to come see us down in ICU if/when she could get a chance. If Dr.F tells me it is nothing, then it is nothing, end of story. I asked the NP at what point do they get Cardio involved and she replied if and when it gets to the point of having to do an EKG THEN after that they would consult with them...that so doesn't fly with me. I know the Intensivetisits have an incredible amount of skill and understanding but they do not know Braeden nor have they been with him since day one (or in Dr.F case in utero).
I was so frustrated with not being listened to again the other day by his Nurse that he had 4 days in a row that I (for the first time ever) was going to request another Nurse for the day. I didn't think it would be a big deal if he could have actually moved his arms a bit rather than having them tied immobile at his sides (how long would any adult put up with that?). I told her it was unnecessarily unkind to not be able to move and she said it would be more unkind if she had to restrain him and place another NJ in. It is true, but I didn't ask for him to be free, just to be able to move 2 inches if he so wanted. I thought long and hard about it in my shower that morning and thought, no I'm going to take it one step further so I did something crazy. I bought her chocolate and thanked her for doing her job. I realized that asking for another Nurse was going to set a precedent on the floor for myself (or worse Braeden) that I didn't want, so I treated her with extra kindness instead. Amazingly (?) it worked. She was SO touched and thankful for my thoughtfulness that I hope next time she has a parent question her or make a suggestion that maybe she'll remember that she is valued and appreciated but as a parent we would like the same in return. I have to keep reminding myself that we are all humans in this and humans make mistakes, even medical ones. Kind of like the mistake that B got IV for 14 hrs straight with no sugars in it, his sugar was 1.7 in the morning when it was realized...easily corrected (thank goodness) and no lasting issues (thank goodness)...forgiveness needs to be the key learning point here.
All of this being said when I made my thanks for Thanksgiving I left out the largest group of people (and now family) in our lives that I needed to thank (and am horrified for it). The biggest thank you that I needed to give is to ALL of the staff here at ACH, from the (previous and current) Nurses to Drs to RT to Techs to Porters to Cleaning Staff and Clerks and Cafe Staff and so on. Without you people coming to work each day Braeden would not be here. It took my 6 yr old to point it out at the dinner table when he thanked all of the Nurses and Drs that have helped Braeden! What a kid!
As is typical with Braeden we changed over so issues for others. He had an issue with an overinflated lung on his right side that was crossing his mid line into the left side. His left lung was very diminished and partially collapsed as a result and they were looking at a possible leak in the lung as they were trying to diagnose if there was 'air' in his chest cavity as a result from a puncture in the lung. He's also been diagnosed with VRE which is an increasingly more common of the 'super bugs'. The good thing is that I'm told it is 'the' superbug to have if you have to be stuck with one. He is simply carrying it at this point, let's just leave it there!
The right lung is looking more 'normal' today and his left lung has started to reinflate to 'normal' size. But the fabulous news of the day is that he is OFF his ventilator!!!
Mr.B is still needing his ventolin every 2 hours and is working hard and wheezy but is (so far) maintaining his oxygen levels. He's having his first nap now after coming off so now is the challenge, we'lls see if he can maintain his SATs while sleeping.
If we have a great next 24hrs we might just get out of the fishbowl of the PICU and back upstairs to sunshine and light! Onwards and upwards, Mr.Amazing is at it again.