On Friday, February 9th, Emma had some blood come up when I suctioned her. It looked pink since it was mixed with the sodium chloride that that we squirt through to clear the tubing, but there were also "blood flecks" in it. That was at 4:20 am and I took the tubing off so I could pour it out into a Dixie cup for McKenzie to see when she got up for work. She was concerned, since blood is never good, but told me to keep her posted throughout the day. The same thing happened again around 9am.
**I do not think I have mentioned it yet, but over a year ago, Michael started his transition with hormone therapy and now goes by McKenzie/she/her. In case you wondered who that was when I casually mentioned a new name. :)
Right before Noon, when Emma gets one of her normal, daily "combo" nebulized breathing treatments, I went in to her bedroom and she was in such a great, silly mood. That's my favorite! I started tickling her and she gave me the best (silent) laughing-smiles. And then I noticed that she had a blood stain soaked into her pajama shirt! It had seeped through out from under her trach dressing (which is a 3x3 foam piece that goes around the trach to keep the plastic from rubbing against her skin and cutting her). Emma has been dealing with a non-contagious infection called tracheitis, which is common in trach kids. (According to my Google search, "regular kids" can get it too and that "it may be infectious" so maybe that's if one kid has it and coughs on another? But we have never gotten it from Emma, even though she coughs a lot.)
I lifted up the trach dressing and it was soaked in dark/dried blood. We change the dressing every night when we do Trach Care to clean around her neck. We had also done a Trach Change (switching out one trach and putting in a clean one, which we do every week) the night before and McKenzie wondered if the blood from suctioning was if the trach rubbed against Emma's airway while putting the other trach in, but it wouldn't have anything to do with all the blood on the dressing since that comes straight from her stoma (neck airway hole). I sent a picture of the dressing to McKenzie and she immediately texted back, "Ok let me come home. Don't suction her yet."
I did Emma's combo neb at Noon as she played with her toys on the floor like usual. To her nothing was wrong. So at least that part of it was good. It would be even more stressful if she was crying through all of it and/or if her heart rate was super high and she was really sweaty. That actually happened a couple weeks ago (February 1st). When Emma is awake and playing, her regular heart rate is around 130-140 and then 60-70 when she is sleeping. But for some reason, at 8:30pm that night, her heart rate sky rocketed all the way up into the 220's!! It should never go over 170. That is the max we have her pulse oximeter alarm set at before it alerts us.
When I was texting my friends and family, asking for prayers and giving updates on the blood situation, a lot of them were asking if we were going to take Emma to the doctor or the hospital, but I kept telling them "no/not yet". Yes, it's bad for her to have blood like this, but it's not enough to warrant a trip to the ER. What more would they do for her than we would? It would only expose her to more germs and cause more stress to all three of us, and then we'd get a wasted bill in the mail a few months later. We did call her Pulmonology team and talk to them a few times, as well as her Pediatrician. I love that the RN said, "You know her best." They also spoke to Emma's ENT team who had done a surgery for her two years ago and the ENT doctor even called McKenzie after that call I was on with Pulmonology, asking how Emma was doing! That was so nice. Basically, we were going to see how Emma did the rest of the night, and if the situation continued the next day just as much or worse, then we would take her in.
The same goes for when her heart rate was so high; we didn't take her to the hospital or even think about doing that (at least I didn't), but it was more of a confusing "why is this happening?" and we never found the reason. I don't remember her heart rate ever going above the 190's before.. McKenzie started Emma's night nebulizer, and held her for a long time. She stopped crying, but her heart rate was still over 200bpm for at least 20-30 minutes. I switched her oxygen from the portable concentrator to the tank so we could turn it up all the way to four liters instead of just the one she uses at night. Then I put a cold wash cloth on Emma's head/forehead, rinsing it again ten minutes later so it would be cold again. We turned on her cricket sound machine, turned the lights off, turned on her star lights that shine and move along the ceiling- all the usual calming night things. By 9:15pm her heart rate was back under 180bpm again. Once McKenzie put Emma to bed, she fell asleep and her heart rate kept going down from there until everything was perfect and back to normal. *shrug*
That situation would have been so much more stressful, trying to keep her calm and her heart rate down while driving 45 minutes to the hospital and not being able to hold her because she needed to stay in her car seat! It might have even gone into the 230's!! She already gets crabby when we go on long driving trips and she keeps holding her arms out towards me because she wants to be held. But I tell her, "I know, I'm sorry. I wish I could hold you, but I can't because the police will pull us over if they see you aren't in your car seat, and then Mama Bear and I will go to jail and then we will never get to see you again.. Also, it's not safe." Then she arches her back a few times, makes a crabby/starting-to-cry face, and looks out the window for a while, holding her "pacifier" in with her left hand.
Another reason I am super glad that McKenzie ended up coming home early on Friday, February 9th, was because when I walked in to Emma's room again at 3pm to give her some more medicine for her tracheitis, she was sitting there and her trach ties were undone! The ties are the pieces of soft fabric and Velcro that hold the trach into her airway!! I exclaimed, "Oh, Honey!" and quickly knelt down beside her bed and tried to connect the other side back in. I assumed it happened because the plastic loop on the other side of her trach had ripped because that is usually the reason why we have to throw the trachs away. Either that or Emma pulls the necessary "pacifier" part off, which is to inflate and deflate the balloon that goes inside her airway. The plastic loop was not ripped at all so I don't know how all of the Velcro had come undone on the right side. She never pulls at it. She did seem to be sitting very still and straight, so I wonder if she realized what happened and thought, "I need to stay very still until someone comes in to help me so the trach doesn't fall out." She is a very smart girl!
We were on the phone with a couple doctors between 1 and 5pm, so while McKenzie was upstairs with the office door closed for a TeleHealth doctor appointment, she left her phone downstairs so I could answer when the Pulmonology nurse called back. However, during that time is when Emma's trach ties came off, so she didn't hear when I called for her the first two times. I tried to put it back myself, but it was very difficult and Emma was crying a lot, so clearly I wasn't doing a good job on my own. I thought if I laid her down then gravity would hold the trach in and I could grab the hemostats from the closet really quickly since we have to use those often for this situation during nightly trach care, but the second I laid her down, she coughed and the trach came out. I quickly put it back in and sat her up again. I apologized to Emma and gave her kisses.
The third time I yelled for McKenzie very loudly. She definitely heard that, and ran downstairs to help. Even then, she also had to use the hemostats to pull the Velcro through the tiny hole. Hemostats are one of the many, many necessary "little things" that we have to pay out of pocket for that Emma uses every day that are not covered by insurance. Even though we are paying sooo much money to have medical insurance. And we just got a document from the insurance company saying that in April they are no longer covering the inhaler that Emma uses twice a day to help open up her lung (singular- the left one is completely closed off) after she gets her breathing treatments! I'm not sure which inhaler brand Pulmonology will switch her to, but our next appointment with them is in five weeks.
It is important to mention that, as you just read about how difficult it was for me/ how I could not get the trach ties on by myself with one hand, this is exactly what McKenzie does (trach care completely on her own) anytime I am gone for a couple days- visiting my family, or taking a mini weekend trip with a friend, and my cousin is getting married in a couple months so I will be gone for that.. Trach care is supposed to always be done with two people. Here are some pictures I took of a trach with the ties attached on one side. See how the tip of the Velcro can barely fit in? It was very difficult to pull it through with one hand, just for this photo, even without gloves! You should always be wearing gloves to keep a sterile environment. Now, try it with a little kid's head moving all around and her sweaty hand grabbing at you!
1. Arrow showing where the ties would have come undone, where the tip of the Velcro starts.
2. Circle showing how the tip of the Velcro is barely through the side of the hole because it doesn't fit properly. I believe when we had the Dale brand (those ties had a star design) the Velcro was a little thinner and easier to loop through. But this is a cheaper brand/ what insurance will cover now..
3. Same as photo 2, slightly different angle.
4. Velcro looped through and attached to the tie, obviously not around Emma's neck. The part of the trach that curves down towards the top of the photo is the part that would be in her airway.
I was hoping that Emma would still be okay enough for school since the blood stuff wasn't bothering her, but her hour of school (with her teacher coming to the house) started at 3:30 and the trach tie thing happened around 3pm. It was too much for all of us. Luckily, this teacher lives really close by, and she is super, super sweet and understanding, so it wasn't too much of an inconvenience for us to have to cancel last minute. She came back again on Monday.
When I came home from picking up pizzas for dinner, McKenzie was in the living room, folding a large pile of laundry that I had left in the dryer. She had new music playing from the surround sound speakers, and she was crying. "Of course you come in on a sad song. I was fine a few minutes ago." After a minute of hugging and her saying she didn't want my help with the laundry because it was relaxing her, she explained the root of the problem, "I hate always having to worry about her dying!! Nobody else [we know] has to worry about their kids dying all the time!" she cried. "I have so many dreams about her dying." She paused to collect herself, then looked at me again. "How are you doing? You seem so level-headed."
"I don't know. Everything is okay, right now.. " Also now as I write this, maybe it's because I seem to "sweat the small stuff" like how upset I got about all that paperwork for the Ortho doctor appointment the day before, that when it comes to the big stuff, it just makes me want to spend more time with Emma, and give her more kisses, hold her more, read books to her and take her out on the big swing that she got for Christmas, which she is always asking us to to. Actually live life with her. I don't want regrets. Those would be my biggest regrets if she died.
"But I am thinking about what could have happened; everything that could
have gone terribly wrong if I didn't go in to give her medicine at that
exact time." McKenzie nodded and I continued saying what we were both imagining.. the very worst. "She was just sitting there with her ties out! How did that happen? That's never happened before. How long would it have been before her trach came out on it's own, or if she coughed it out? Her foot probe wasn't on because she wasn't sleeping, so it wouldn't have alerted me that something was wrong. And I didn't have the video monitor in front of me. Would I have heard her fall over? Or what if I did have the video monitor and just thought she was laying down to take a nap? She could have been blue by the time I went in there again! Then what!?"
I actually thought about the "then what" several hours later because I think "imaginary preparation" is important, even though it's not something that I want to be thinking about or imagining. If it happened when I was alone, assuming her trach came out, my first thought would be to lay her flat on the bed and put her trach back in. I would angrily throw all of her toys off the bed to make more space for her. I would switch her oxygen over to the tank and turn it all the way up to 4 liters and turn her ventilator breath rate from 0 to 18. We keep it at 10 when she's sleeping because once in a while *she will not take a breath on her own* within ten or 15 seconds, and the Apnea alarm sounds after giving her the puff/breath through the vent tubing. I would anxiously wait, the longest seconds of my life, to see if all of that helped her skin start to turn from purple to pink, and see if she started to open her eyes.
Last time, yes, last time (because please do not forget that this is a reoccurring issue for us -- even the "minor emergencies" that only last a couple minutes are still a big deal and suddenly we feel like we are back in the NICU), I held her over my shoulder and rubbed and patted her back aggressively with a firm hand. In this instance, with her trach not being attached since I couldn't get the ties back on myself, I would have to lean her forward in a sitting position with my left elbow on the bed and left hand holding her trach in. I would use my right hand to rub and pat her back in attempt to wake her up. "EMMA!! Come on!! Please!! WAKE UP! You have to wake up!! You're only six years old, Honey." It would be hard to see her color come back with all the tears in my eyes, but I would finally feel her body jerk awake. "YES! Yes! That's good! Come on, Honey. Keep fighting! You got this. I'm so sorry!"
I'm not even sure at what point I would call 9-1-1 because I feel like talking to someone in the middle of all of this would slow me down and I wouldn't even be able to answer their questions or remember our address until I had done everything I could for her. And obviously, hopefully, I could get her back again (since stuff like this HAS happened to us before!!) and then maybe I would even call McKenzie before 9-1-1. We discuss these scenarios to make sure we are on the same page for the future. **Reminder: this exact "story" of her trach coming out and turning blue/purple did not happen the other day. But it could have. Things happen so fast. And it was actually the first big emergency we had with Emma, in 2020, right before Covid was announced, thank goodness. Thank GOD.***
>>> Update! I am pretty sure that our Little Miss, aka Miss Stinky Cheese, actually is the one who pulled her ties off!! And they did not "just somehow come undone by themselves". Because later that day (or maybe it was the next day?) I was watching her on the video monitor and she really looked like she was picking at the Velcro tip on the side of her neck. McKenzie was on the phone outside and I asked her to come in because I felt like this was a very important thing that we needed to talk to Emma about right then. Another reason I feel sure it was Emma is because she laughed about it! (..Punk.)
In conclusion... per our hypothesis, we believe the reason for the blood was from an inflamed airway because of the tracheitis, and/or possible rubbing when putting the trach in the night before, a lot of coughing... That Friday night and the following days, everything was good and back to normal! Yay!! Then today (Sunday) we went to the zoo because they had a four-month long "Prehistoric Predators" event. The weather was really nice, what I would refer to as "beach weather" even though it's not even fully halfway through February yet!! It was 80 degrees, but pretty breezy.
I brought my wide Fujifilm "Polaroid" camera since I had one last roll. We could only take pictures in really sunny spots and even then the pictures turned out under-exposed in any shadow areas, but we are wondering if that is because the film expired in 2021. Maybe I will buy one more roll and test that theory. Hmm, looks like Amazon only sells a double pack; 20 exposures. Oh well! ;)
