ALS with Anna Vol. 12

In my Brittany Spears

Oops . .. I did it again. 

Had doctors play with my tube, About lost my mind.

Oh baby, baby.

Oops, I am definitely not in love with my local ER.

Mayo was sent from above 

I am over it!

Okay for those of you who didn’t get it. You apparently aren’t Brittany Spears fans and need to go read the lines to the chorus of the song to make it make sense. That was a shout out to all my 80s and 90s babies.

Oh okay, so what had happened was. First off you have to understand that I just had my tube replaced 16 days ago for a blockage, for medicine getting stuff. Well, if you haven’t figured it out by now I have bad luck. After getting the tube put in 16 days ago, I got sick immediately afterwards. We didn’t think anything of it. Shortly after getting the tube exchanged I had to get my doctor to order Zofran for me because I was starting to get nauseous Feedings. 

Fast forward to Wednesday afternoon 10/30. Gidget gives me my afternoon feeding at 6 o’clock. About 3/4ths of the way through it I start to feel sick. I had her stop. I felt really full and nauseated. Then that night about 10 I got hungry again. Side note: you know when your stomach is completely empty and it “rolls” in hunger pains? When mine does that it makes my tube move/roll too and it’s quite uncomfortable. So , I get Jason to feed me because it’s rolling and hurting. As soon as he got done I felt it coming. I didn’t know if I had to poop or throw up. Jason got me on the potty and got me the trash can. I started to violently throw up. I gagged and threw up for what felt like five minutes. Jason got a Zofran in me and I was able to get back in bed and sleep.

Next morning 10/31. Happy Halloween to us. I got tricks not treats in case you were wondering. Jason feeds me at 6 o’clock. I started feeling sick again. Immediately gives me Zofran and I’m fine. I’m starting to worry at this point because I know the first sign of a compromised tube is throwing up. Yes, I use “ throwing up” because I hate the”V” word. It just sounds disgusting to me. Any who… Around 10 it’s time for another feeding and medicine. I really don’t want food. I’m sure you understand why. By this time Gidget is here. She goes to give me my meds and she says, “Oh my god your tube is short. It’s all the way down.” I immediately call for Jason in my eye gaze. He is the only one who manipulates it as far as changing the bumper spacing or depth of the tube that actually goes into my stomach. He does have to adjust periodically. It normally stays on six. When Jason got in here it was one 10. He pulled it up,but it didn’t feel right. When he let it go it sucked right back in and past the 10 mark. 

I knew right then I was going to be taking the fancy Uber Ride again. Well now that I’m on hospice. That’s another blog I have not finished. I can’t just call 911 and get an ambulance to Come get me. It has to be approved. As we waited for my nurse to arrive Gidget Googled my symptoms. 10/10 don’t recommend doing that. I panic. Luckily, my nurse was right down the road. She gets here, in no time. She agrees my tube has been compromised. I get upset and start crying. Jason gets upset because I’m crying. I don’t want to go back to the ER here. Last time the doctor wasn’t nice. The doctor treated me like a bed number, not a person. I miss Mayo and wanted to go back there. They were always  nice, understanding, and knew what they were doing. However, I can’t because I’m on hospice. After praying over and over again for God to watch over me, I agreed to go to our local ER. 

Off I go, in the fancy Uber once again, praying the whole time. Jason and I are both optimistic that this experience is going to be better. We get in a room. Greeted by a nurse immediately, get good vibes. Doctor comes in very quickly. Ask what’s going on Jason tells him everything I just told you and looks at us and says, “ But the tube is still working.” He acted we were stupid and had nothing better to do but come to the ER. Jason and I are dumbfounded. My stomach sinks, not again I’m screaming in my head. 

I was proud of Jason. He calmly said, “ yes, technically it still works, but every time we feed her she gets sick and throws up.”  To which the doctor responded,” Oh I understand now that you explained it like that.” I was like you have got to be kidding me. This was when I knew things Were not going to go my way. He acted like we were stupid. He looked at the tube to get the size. It’s a 16 gauge, I will never forget that after that day. He left, then shortly afterwards the nurse came in to check the size of the tube again. I thought that was weird. She said she needed to know so she knew what she was looking for. Thirty minutes rocks on and the doctor walks back in with a completely different tone of voice. Talking to us gently and concerned like. I knew then something was wrong.

The hospital didn’t have my tube in a 16 gauge tube. They only had a 20 gauge, and that would definitely not fit. The doctor didn’t really give me options. I felt helpless, he wasn’t giving me options. It was like he did not even know what to do. We all stood and looked at each other. I got Jason to get my Tobii. I asked the doctor “ well what do we do? This one has to come out, and that one doesn’t fit. So what do you suggest I do?” He said , “ The only thing I know is to send you to Savannah.” Not with a lot of confidence. I started to freak out because back to hospice again, everything must be approved, and how much longer this whole ordered ordeal is going to be. Not to mention the mom guilt, my babies aren’t going to get to go trick or treating. I still haven’t been on Facebook because I don’t want to see everyone else’s photos. I also am in the back of my head going this could be the last year I would have been able to see them go. I just had 500 things going on in my head at one time. I had to pull it together. 

So, I asked the doctor can you call and make sure they have one before we go down there. He leaves, Jason calls hospice nurse because everything has to be approved. We get the go ahead from hospice. Thirty minutes go by and the doc comes back. The only hospital that has my tube is in  Augusta. Now, mind you I just got the tube replaced at this hospital three weeks prior. I still haven’t figured that out. Apparently the tube I had was the Cadillac version of tubes. BUT he has another idea! Give me a temporary that is more like a Ford Tarus, and they will order the kind I have and I will come back and get it in a couple of weeks. Not ideal, but it was the best option there are. 

So, we get ready, Jason reminds the doctor to deaden it before he gets started. He starts taking it apart without giving me the shot. So Jason tells him again. He says I was going to give her the shot after I take it out. What the hell? Does that make any sense? It certainly doesn’t to us. Jason politely told him “ I have seen this done three times. You just give her the shot under the bumper. He wasn’t sure how to do that. At this point I’m wondering where he got his license. Jason told him how. He gave me the shot and didn’t even give it time to take effect and just pulled my tube out. My tube did not have the balloon on the end. He did not even notice that. Apparently it’s still floating around. I guess I will pass it in a couple of days. Who knows? Then he gives me like 6 more shots of lidocaine. Mayo only gave me three and that worked just fine. I think he ended up sticking 10 times. Good thing is I barely felt the last 3-4. He also asked us about the red tissue around my hole where my feeding tube goes in. Mind you, I’m checked out at this point. I’m praying over and over, God please watch over me, and trying to find a happy place. The doctor then begins to scrub at the tissue, like he is going to scrub it off. Who thinks that is a wise choice? Not this chick and I don’t need a PhD to know that. He is also pressing on my stomach around my hole like it’s a wound. I have never had a doctor do that. You’re supposed to take the tube out, wipe off area clean then. Then put in a new tube. In and out. After all his scrubbing and mashing, he puts the new tube back in. Then says x-ray will come by to check placement, and he is gone. 

I’m shaking.  My mother in law told me she didn’t know how I just did that. I’m glad it is over and I never want to go through that again. I don’t know how she and Jason stood there and watched it. I would have passed out if I hadn’t been laying down. The next saga is finding a syringe to fit. This tube isn’t anything like ours. We have to get a syringe to be able to give me the contrast to make sure placement is right. We have like 5 nurses trying to figure it out. Jason tries, they try. I have 8 different people in or around my room trying different syringes. All of a sudden this nurse I have not seen comes charging in my room. Jason is standing on the outside of the doorway. Mrs. Vicki, my mother in law, is standing beside me at the side of my bed. She all but pushes her out the way and says I know how to do it, grabs my tube and pulls it. I holler, as best as I can, being non verbal, and say you’re hurting me. Everyone in the room jumps. She immediately drops her hand a little and I get a little relief. She looks dead in my eyes and says I’m not hurting you. Jason tells her she is pulling my tube. She said “ no I’m not” I’m continuing to make noises and I’m looking around at everyone in eye contact range with big eyes like someone help me.  I can still feel she has the tube pulled tight. I’m trying to arch my body off the bed to get the tension off the tube, but I can’t because I’m pretty much paralyzed. The only thing I can do is move my legs a little. Then she pulls up on the tube again. I get louder. Jason starts walking forward to her, with a purpose. While cursing her and telling her yes she is pulling the tube and hurting me. She quickly lets go and pulls her gloves off and walks out. We all just stand there and stare at each other. Jason has himself a “moment”. I Have to do damage control to get him to calm down. Thank God his mom was with us because she helped. Once he cooled off the other staff told him and me they were sorry. He apologized for losing his cool, and they told him it was completely understandable. I also want you to understand this all happened in a matter of 30 seconds. We didn’t know what she was doing until she plugged my tube and it went down hill fast. 

Finally the doctor comes back and shows everyone how to do it. He did know how to do that. Everyone admits they really don’t know much about feeding tubes. Ha! Yeah we already know. X-ray does their thing. The X-ray comes back good. I get the go ahead to finally eat at 4 o’clock in the afternoon. I got discharged and they put in a request for transportation back home. Then we get told 8:30 before they can get me. It’s 4 o’clock. I’m ready to go. I tell Jason to put me in the van and take me home. We decided that might not be a good idea. We will wait. Everyone goes home, we turn the lights off, turn the TV on, and take a nap. Wake up it’s almost 7 o’clock. We get the news transportation has been moved back to 11 o’clock. I’m D U N done! I told Jason to call aunt Lisa to bring her Tahoe and I’m going home. She came and got us and we finally made it back home about 9 o’clock. The transferring in and out were touchy but after everything I had been through I didn’t not care. I was over it, the day, that, hospital, and everything else but getting back to my bed. 

Now, I know what you’re thinking, why didn’t you stop the doctor, why didn’t you leave, honestly writing this I think the same thing a little too, but all of the bad stuff did not really add up until I was typing this out. Hindsight is 20-20. Each traumatic event happened very fast, not that it makes it any easier. I definitely have trauma from going through all that. I will NOT be getting my tube worked on in that ER again. This was a hard one to write going back and remembering everything again even though it was just yesterday. 

I am very sore today, all over. I’m touched out. I dread when it’s food or medicine time. It doesn’t hurt, but I just don’t want it touch. It’s hard to explain. I know Jason nor Gidget will hurt me, but I’m also scared something is going to go wrong and I just can’t stomach going through that again.  

I do want to add that everyone else was great. I have never had bad experiences at said hospital before. I don’t want to diminish the nurses or staff that were great. My main nurse Casey was great.

That’s all I got for you for now. 

ALS with Anna 

~He has a plan and I have a Purpose~

PS all of this was written in one, the day after it happened. Please excuse grammar and spelling mistakes but I’m tired. I post this blog especially for for family and friends because I can’t verbally tell everyone what happened, and yesterday was a lot. I also want others to know this is not the way it should be.