Avelyn has now been septic more than her fair share, from endocarditis in January (that nearly killed her and has set her down this hellacious path of complications including four months of intubation and kidney failure), to sepsis in late July (that severely damaged her left ventricle and nearly sent her into cardiac arrest), to sepsis (MRSA) and NEC last week that has again forced her to fight for her life.
So the story goes....
Last weekend, while I was away working, Avelyn was really fussy. She was teething, had terrible diarrhea and a bleeding diaper rash. Her fussiness was chalked up to all of that, but again, maybe we should have been more weary. While driving to Nashville Monday, I got a call from one of her primary nurses saying that she wasn't acting like herself. Her work of breathing was increased and her color was worse usual. Some interventions were made, she pinked up and seemed to do better but was still really fussy. But again, her diaper rash was hideous and she was actively cutting a new tooth.
By that evening Avelyn was in such pain that I knew something else was wrong and was scared. I requested to see the doc who had seen her through the week prior's anaphylactic episodes, and therefore knows her well. When she came in I told the doc I didn't know what was wrong, but that something was amiss and was I was concerned, very concerned. She was in pain, her color looked awful and she was crying like she does before a big crash. The doc looked her over, and at that given moment she looked ok. She said she would check in on her frequently, God bless this doctor for taking my vague concerns seriously. She saved Avelyn's life that night. Seriously.
Not long afterward Avelyn had a bloody diaper that spilled onto her bedding. I changed her and asked the nurse for help changing her bed. I put her diaper on the scale (all of her in's and out's are calculated), we got her settled and then I crashed, believing the nurse would follow up appropriately. (I had been up nearly 36 hours at this point, with only a 1.5 hour nap before driving to Nashville after work, and despite my worry-I am human.)
An hour or two later, the doc came in to check on her and Avelyn woke writhing in pain again. I told her I was super concerned about the bloody diaper. I assumed the nurse had called and that's why the doc was there.
The doc didn't know about the diaper and was just there to check in because of me expressing my concerns earlier in the night (seriously, this doc is amazing). I don't know why the nurse hadn't told her, because a bloody diaper is a big deal in this sick kid world as it is often a precursor to sinister happenings (maybe she was just incredibly busy with the kiddo next door, maybe she wasn't, I don't know but I have tried not to dwell upon it).
Anyway, hearing this the doc literally fished through the trash to find the diaper. After seeing it, she ordered a slew of labs and tests. These came back showing Avelyn had a terrible active infectious process and so she was immediately started on antibiotics. This was prior to the NEC or pneumatosis ever being found on her X-ray.
I fully believe the quickness in which the doc ordered the antibiotics is what saved Avie's life.
The rest of the week passed slowly given Avelyn was so critical and we were all so worried. Her blood cultures came back showing she had a MRSA infection in her blood stream on top of the NEC. Infectious disease doctors were in and out multiple times a day, monitoring her progress and asking us how we felt she was doing. Surgeons were in and out multiple times a day too, because in all reality her bowel could have perferated at any time.
Sean and I again were forced to have talks no parents should. We questioned whether we could put Avelyn through a major abdominal surgery, even if it was considered life saving. Such a surgery for Avelyn would be devastating. Not only would removing part of her intestines be a major ordeal with likely life long consequences, but also it would mean disruption in her paratoneal dialysis. This would force her onto hemodialysis. None of this was discussed with us by the team, maybe because the NEC was caught so early but as usual my brain was miles ahead. After eight months of this hell, it's hard not to live that way.
But, by the grace of God and quick actions of our Amazing PCICU team, it didn't come to that. Our Avie fought through yet again with unbridled tenacity that continues to floor me. (I don't know where she gets it, but the kid is amazing.)
After a really tough touch and go week, Avelyn seems to have stabilized. The infectious disease team came to the conclusion that her MRSA bacteremia was likely a central line associated infection. They encouraged the team to remove the affected PICC line and insert a new one. Once bacteria is set up in plastic, there's way to treat it.
So yesterday she had a new PICC line placed. The hospital has a special team of nurses that come into the room and place PICCs. The team's only job is to place, monitor, and trouble shoot PICCs- they do it all day every day.
I was woken by a member of the PICC team early yesterday morning to sign a consent form. While signing it, I specifically stated that Avelyn has been really sick with sepsis and that she is extremely fragile. I requested only an experienced nurse place the PICC and for no trainees to work on her. The nurse assured me that she would pass the message to her preceptor and they would take good care of her. The preceptor came in, literally five minutes later, and rushed me out. I figured she was rude because she had a busy schedule or maybe that's just her personality, now I question it.
Did they take my concerns and requests the wrong way and treat my baby differently because of me? I hope not, but in these circumstances I can't help but question EVERYTHING.
A couple hours later I got the call that the PICC was placed, Avelyn did well, and I could come back. When I got to her room, Avelyn's nurse asked if I knew about the skin tear under her arm. I said no, and asked which arm. Of course l, and not coincidentally, it was the the same arm the new PICC was placed in.
I asked to see the tear, because Avelyn's night time primary and I had just given her a thorough bath the night before. We checked all of her folds and powdered them because sometimes she'll get skin breakdown between them. We checked her diligently, her skin was fine. We then dressed her in a sleeveless shirt. There's no way I wouldn't have noticed a inch long >1.5 centimeter deep wound in her arm pit that was bleeding everywhere. Because that's what we found when the dressing was removed.
The nurse seemed very surprised at how bad the wound was too, the PICC team had discribed as a "skin tear".
At first I was in shock.
How could this happen?
Seriously, how in the hell could this happen!?
How rough did they have to be with my baby to cause her skin to rip like this?!
I was soon so angry and heart broken for poor Avelyn I could barely speak and was just crying for sometime. It took me a little while to compose myself and ask to see the nurse manager.
To her credit, Avelyn's nurse handled the situation well. She wasn't in the room when it happened but told me exactly what she knew and was very upfront in answering my questions. From what I was able to gather, the nurse who placed the PICC was not the same one who prepped Avie's arm. From the look of the injury, her arm was ripped by being hyperextended and pulled too hard away from her body. The PICC team passed off the wound to Avie's nurse like it was already there, I figure they truly thought this.
(I can't stomach the thought of someone knowingly causing such harm to a baby and then lying about it- I really don't believe Vanderbilt would employ someone like that.)
Human error and/or negligence has significantly harmed my child, and I understand that happens sometimes. But that doesn't mean I am not pissed and heart broken for her. She is in such pain from this wound, every time she's awake and moves that arm she cries a high pitch cry of pain.
I want whoever was too rough with her to know the pain she has caused and the risk she has placed Avelyn in. I want her to know that these babies are insanely fragile and you cannot treat them as you would a normal child. I want her to think how she would feel if someone had caused a gaping wound on her baby.
I thank god for momma instincts I often don't understand but follow anyway. I was adamant about Avelyn recieving dilaudid, rather than the intended morphine, prior to leaving Avelyn's room for them to place the line. I pray she didn't feel the injury fully but I know it must've caused her serious pain either way.
Despite this happening, it has reaffirmed my love for Vanderbilt. I know things like this can and do happen at every hospital. I work in a hospital and they are filled with imperfect people, most of whom do their very best but all of whom are fallible.
I feel my anger and concerns are being heard and documented. The PCICU's manager is sending the manager of the PICC team to speak with me and, while at first I was indifferent about it, I am now looking forward to it. Avelyn cried much of the night and has been needing regular doses of morphine to treat the pain associated with the wound.
I want the manager to know this and ensure no other baby experiences such an unnecessary and painful experience again. I want it documented that this happened and who was in the room when it happened. I want a paper trail. That way, in the case of another child sustains an injury maybe a pattern can be seen in behavior.
In hospitals, if it's not documented it didn't happen- so my focus right now is ensuring I take every step in the proper channels I can.
I truly feel the staff and management are supporting me in this effort.The mark of a good hospital is acknowledging and apologizing for mistakes and wrong doing and then taking steps to ensure such does not happen again.
Vanderbilt Children's is rising to that challenge and I am not at all surprised. This place has been such a blessing to us. I feel blessed to be here and on a unit, that for the most part, loves and cares for my girl as she deserves. There will always be bad apples and mistakes but overall our Avelyn is so very loved and well cared for.
This unit's staff have saved her life time and time again, for that I am eternally greatful. In times like these I must keep this in the forefront of my mind, not just because it allows me to get through the day without losing my temper (that would be of no help to anyone), but because it is true and the hospital's PCICU team's greatness deserves to be acknowledged.
On another note, Avelyn's wound has already showed incredible healing overnight. It's not nearly as deep and I am so greatful to see its progress. I didn't take a photo yesterday, but it was much deeper-at least a centimeter. I am shocked that Avelyn is healing so well given she was off of feeds for a week.
Besides that she is doing ok, not great but ok. She still has moments where her color is terrible and it's obvious that an infectious process continues to brew but those moments seem to be less frequent and intense. This week's attending thinks she is also suffering effects from going a week without nutrition and it'll just take time to see her feeling like herself again. She's still breathing heavy and the cause to that is difficult to pin point, hopefully it'll subside with as her over all condition improves.
Of major note, after nearly three months of weans, she is finally off of precedex, which is the sedative she has been on since she was a month old. We don't know how this drug has effected her development or overall clinical picture and I am so glad she's off of it. Today's wean was twice the normal size (because the IV pump was already at the lowest setting), so she'll likely struggle with the wean more than usual. I hope not, but knowing Avelyn it'll be a rough day. With the precedex coming off, she is for the first time in 7 months completely off of IV drips. This is bigger news than Ican describe and I wish she were in a place I felt comfortable celebrating. Maybe next week she'll be feeling better and not in as much pain, that way we can find a way to celebrate this huge accomplishment!
As usual thank you for checking in and following our sweet precious baby. She continues to give her all and fight through challenges no one should have to. We are beyond proud to be her parents and able to witness her remarkable journey. Sean and I are often overwhelmed by the love and support given by all of those who Avelyn's story has touched. You all are amazing and thank you for all your prayers and love.
Until next time, take care!
The photos below are in chronological order. As I have said before, I don't often take photos of her at her worst, it's just too sad. The photo of her in her diaper was the night before she sustained the wound under her arm. You would be able to see it bleeding if it were there. The photo of the wound was taken more than 24 hours afterwards, it's already started to heal amazingly (it was about a centimeter deeper, not that you can tell the depth well anyway due to the bleeding or poor photo in general), please pray it continues to do so.P