From that moment I panicked. I got so nervous so fast. I began texting my friend for her experience changing the tube out at home alone. I started watching YouTube videos and even considered making a bogus appt with the surgeons office just so I could do it while I was there with the nurse again. I'm a nervous wreck about this procedure and it isn't like I haven't done it before! I changed her tube out myself in January. But I was in the hospital and had the coaching of the nurse beside me. Suddenly when you're at home, not near a hospital - your confidence seems to diminish quickly.
Annabelle's tube has been giving us trouble lately, it gets clogged when venting more often than it doesn't. It's becoming more frustrating and I knew I needed to get over myself and just change the stupid tube.
Sunday evening, while dinner was on the grill, I collected all the supply, sent Mady outside to ride her bike and AK and I scrubbed up. I knew once the wheels were in motion, I would go into my typical nurse-mom autopilot and everything would be fine. But I couldn't swallow over the fear of the just-in-case-it-doesn't. The only thing playing over and over in my head is our surgeon preaching to me: "The stoma (hole) will close within 20m once the tube is out. If it comes out by accident or during a change, you only have minutes to get it back in or go to the nearest hospital immediately. If you can't get it back in, surgery will have to be done to reopen the hole."
Game Face On
As always, I kissed her little forehead and said a quick prayer. Deflated the balloon. Reached with my right hand on the tube and left hand on her tummy, and pulled. During the second tug is when I felt a flood of fear surge thru my body, 'something's not right...' She cried as soon as the tube was out. I wiped her tummy off from the little blood and tummy yuckies, looked into the stoma and recognized it appeared very different than it did before. I didn't want to waste time though and grabbed our new Mic-key button and began attempting to put it in. A brick wall. I wiggled it around slowly, a little harder.. Nothing but hardness. Annabelle was screaming and I knew that would only make it worse or more difficult. We calmed her down and I looked up at AK with a blanket of fear across my face "I can't find it... I don't know what to do!" I tried for another minute longer and then triple checked the tube size to make sure they were indeed the same sizes. I handed it to AK and we switched positions. I held Annabelle down while he attempted to put it in.. The tube kept buckling from the pressure of pushing and moving but the hole just wasn't anywhere to be found. Finally he pulled the new tube up and it was covered in blood all over. I called it, "Were done. Call the hospital we need to go, now." I covered her tummy with a stack of gauze and held tight as he scooped her up like a baby and headed towards the van. On the way to the hospital I called the ER to let them know we were in route and the situation, everything was set and seemed fine.
On arrival... ugh, complete different story. AK dropped me off at the door with Belle and her box of tube and supplies in hand. I walked thru the doors to greet two women at the front desk chatting. "Hi, this is Annabelle Bishop, I've already called and spoke with ----- , they're expecting me". She laughs with her friend to finish their conversation and asked me to sign in on the clipboard. I looked at her with crossed eyes. Im carrying a 30lb kid like a baby so she remains on her back. She's dripping gastric fluids / blood on the floor from under my hand and i'm juggling two boxes. WHERE she thought this third arm would come from, I don't know. I repeated our name and information again and stood there. She said someone would be with me shortly. I responded, "You mean, immediately?" I stepped away and AK joined us in the waiting room. I paced around for several seconds and walked back to the desk.
"Mam, I cannot wait - you don't understand. We need to see someone right away"
She called the head nurse and they instructed us to go thru triage, but we would have to wait our turn because someone else was being assessed already. I lost it.
"Let me speak with the attending right now. I am sorry to act this way, but this is my baby. This tube has been out for nearly 30m and our chances of getting it back in without surgery are growing more and more slim by the seconds... I need to see someone NOW!"
I turned around with tears in my eyes and arms that felt like jello from shaking and holding my traumatized child. A lady that was also checking herself in, signing the clipboard, looked up at me with her hand in the air. She said loudly "You do NOT apologize to her my child, you demand what you need for your baby girl! This is a hospital and she should have reacted appropriately from the beginning! Do not apologize. God Bless you." I smiled with tears.
Finally a nurse slowly walked thru the door, visibly irritated at my demands and asked I follow her.... into triage. She asked that I sit, and I stood. She asked why Annabelle has a tube. "She is diagnosed with Eosinophilic Esophaghitis and has an undiagnosed intolerance / problem with protein. She is dependent on Elecare for most all her nutrition." The nurses response, "Well, she looks healthy to me." and just stared. "Thank you, it took a lot of work to get here... what else do we need to do in triage before we can get the tube back in place?" She then asked "Well.. is the tube in or out right now?" - "ITS OUT! I have it in the box." She then wanted to know who put the tube in, in the first place. "The surgeon!" Oh God, you cannot imagine the frustration. She could tell I was upset and finally changed her tune when she realized that under Annabelle's shirt, was a wide open hole into her stomach and this wasn't time to play around. Finally. We were escorted by another nurse to a room and AK stayed in triage to give information.
The doctor quickly joined us, and immediately said "Well, do we have the tube? I haven't put one of these back in yet, but we'll see what happens." WTF?! He grabbed the tube and assessed her tummy. I grabbed his wrist and asked "Don't you want some lubrication first?" the suggestion startled him and he smiled at me, 'thank you mom' and from there we worked together. I looked down before he inserted the tube. Her hole looked almost completely closed. I just knew it was going to be bad. The time was nearly 50min from the time we removed her gtube at home.
The pain... oh my god, the pain was unimaginable. This experience was another that will forever be scarred into my memory. I swear he nearly put his fist thru her stomach. The pain literally continued taking her breath away and making her gasp between screaming and arching her body to escape. We held her down for far longer than I believed possible, but thankfully.. it did go back in. We inflated the balloon to keep it in place and she screamed again. The torture was over. I wiped up all the blood and lubrication and pulled her shirt back down as requested (be Belle). We paced the room over and over and over as she moaned and stared at the walls.
Que the parent guilt.
You could read it across both AK and my face.. how did we let this happen? Why couldn't we do this our self at home? Why did it come to this painful ER visit for something that was supposed to be so easy, quick and routine?
About an hour or so later we were taken to xray for a contrast scan to confirm placement of the tube into her stomach. Everything indicated we were in the right place and we finally made it home. Exhausted and with the heaviest heart.
Annabelle is quite bruised. Her stomach is very tender to the touch and I am certain this incident will leave us with floods of granulation tissue in the near future. Meanwhile, the recovery has simply only involved a bit of Tylenol/Motrin for pain relief, managing temperature spikes and diarrhea. I spoke with our doctor when following up, the next day. She indicated what happened and explained to me why we had the difficulty placing the new tube. Annabelle has another bruise, located about 8pm from her stoma. That happened one day when she was running and I had JUST unhooked her feed without removing her extension. She ran away from me and the extension (tube that connects to her stomach and heads down towards her knees), somehow got snagged and pulled tightly enough to drop her to her knees in screaming pain. Right away we saw the stomach turn red from where the balloon inside, pulled aggressively hard inside her stomach. She bruised herself from that accident inside her stomach... this is called a Hematoma and the result feels like a solid hard rock below the skins surface. When I pulled the original tube out, I felt something snag it like a pop and then the tube came out. Apparently when that happened, the hematoma shifted her stomach in a direction that prevented the two holes from lining up any longer. That's why when we tried inserting the tube, it felt like we were hitting a brick wall... we were - the hematoma. When the ER doctor accomplished getting the tube in, he managed to scoop deeply around her stomach and around that hematoma which allowed him to find the hole. In retrospect. I should have anticipated this .. I will continue to beat myself up for allowing this to happen to Annabelle. It's a terrible human / mommy / protective mama bear thing that I always seem to do. I promise to her, this won't happen again if I can ever prevent it.I feel so guilty. I just should have known....
Meanwhile.
We still have not received any formula. The phone battles continue as I march my way up the ladders to demand explanations for why our medical supplier is determined to not do their job and send our supplies. Every time you get someone on the phone, they give a different story. AK called Monday and politely asked where our child's food was, it's now been nearly a month. They assured him it was shipped and should arrive within the next day or two. Friday I was furious. I am running out of food for my child. We are paying out of pocket left and right for formula from random strangers and begging from generous people that also use this formula to donate what they have until we can pay them back. People are shipping us cans as we parade Medical Supply Exchange Forums and beg. This is absolutely ridiculous that were playing this game with a supplier. I was finally told that the hold was based on insurance denial once again. I spent days on the phone with both Medicaid and our Primary Insurance Company, United Healthcare. No one can clarify who is the responsible party to handle this formula prescription. I'm furious - beyond frustrated and exhausted from this battle that should never even be taking place from the beginning. I contacted a different medical supplier last week and poured my heart over the phone and explained our situation. Were dropping our current supplier and moving all our needs to a different company. They will, without a doubt, save our life moving forward. Granted, it's going to take much leg work, exchanging supplies that were renting (IV poles, Pumps etc) and gaining a new suppliers different equipment and adjusting to the small learning curve. Hopefully, fingers crossed, we can make this change swiftly and efficiently and hopefully have Annabelle's formula in hand as soon as possible! I'll keep you updated.
As always, I kissed her little forehead and said a quick prayer. Deflated the balloon. Reached with my right hand on the tube and left hand on her tummy, and pulled. During the second tug is when I felt a flood of fear surge thru my body, 'something's not right...' She cried as soon as the tube was out. I wiped her tummy off from the little blood and tummy yuckies, looked into the stoma and recognized it appeared very different than it did before. I didn't want to waste time though and grabbed our new Mic-key button and began attempting to put it in. A brick wall. I wiggled it around slowly, a little harder.. Nothing but hardness. Annabelle was screaming and I knew that would only make it worse or more difficult. We calmed her down and I looked up at AK with a blanket of fear across my face "I can't find it... I don't know what to do!" I tried for another minute longer and then triple checked the tube size to make sure they were indeed the same sizes. I handed it to AK and we switched positions. I held Annabelle down while he attempted to put it in.. The tube kept buckling from the pressure of pushing and moving but the hole just wasn't anywhere to be found. Finally he pulled the new tube up and it was covered in blood all over. I called it, "Were done. Call the hospital we need to go, now." I covered her tummy with a stack of gauze and held tight as he scooped her up like a baby and headed towards the van. On the way to the hospital I called the ER to let them know we were in route and the situation, everything was set and seemed fine.
On arrival... ugh, complete different story. AK dropped me off at the door with Belle and her box of tube and supplies in hand. I walked thru the doors to greet two women at the front desk chatting. "Hi, this is Annabelle Bishop, I've already called and spoke with ----- , they're expecting me". She laughs with her friend to finish their conversation and asked me to sign in on the clipboard. I looked at her with crossed eyes. Im carrying a 30lb kid like a baby so she remains on her back. She's dripping gastric fluids / blood on the floor from under my hand and i'm juggling two boxes. WHERE she thought this third arm would come from, I don't know. I repeated our name and information again and stood there. She said someone would be with me shortly. I responded, "You mean, immediately?" I stepped away and AK joined us in the waiting room. I paced around for several seconds and walked back to the desk."Mam, I cannot wait - you don't understand. We need to see someone right away"
She called the head nurse and they instructed us to go thru triage, but we would have to wait our turn because someone else was being assessed already. I lost it.
"Let me speak with the attending right now. I am sorry to act this way, but this is my baby. This tube has been out for nearly 30m and our chances of getting it back in without surgery are growing more and more slim by the seconds... I need to see someone NOW!"
I turned around with tears in my eyes and arms that felt like jello from shaking and holding my traumatized child. A lady that was also checking herself in, signing the clipboard, looked up at me with her hand in the air. She said loudly "You do NOT apologize to her my child, you demand what you need for your baby girl! This is a hospital and she should have reacted appropriately from the beginning! Do not apologize. God Bless you." I smiled with tears.
The doctor quickly joined us, and immediately said "Well, do we have the tube? I haven't put one of these back in yet, but we'll see what happens." WTF?! He grabbed the tube and assessed her tummy. I grabbed his wrist and asked "Don't you want some lubrication first?" the suggestion startled him and he smiled at me, 'thank you mom' and from there we worked together. I looked down before he inserted the tube. Her hole looked almost completely closed. I just knew it was going to be bad. The time was nearly 50min from the time we removed her gtube at home.
The pain... oh my god, the pain was unimaginable. This experience was another that will forever be scarred into my memory. I swear he nearly put his fist thru her stomach. The pain literally continued taking her breath away and making her gasp between screaming and arching her body to escape. We held her down for far longer than I believed possible, but thankfully.. it did go back in. We inflated the balloon to keep it in place and she screamed again. The torture was over. I wiped up all the blood and lubrication and pulled her shirt back down as requested (be Belle). We paced the room over and over and over as she moaned and stared at the walls.
Que the parent guilt.
You could read it across both AK and my face.. how did we let this happen? Why couldn't we do this our self at home? Why did it come to this painful ER visit for something that was supposed to be so easy, quick and routine?
About an hour or so later we were taken to xray for a contrast scan to confirm placement of the tube into her stomach. Everything indicated we were in the right place and we finally made it home. Exhausted and with the heaviest heart.
Annabelle is quite bruised. Her stomach is very tender to the touch and I am certain this incident will leave us with floods of granulation tissue in the near future. Meanwhile, the recovery has simply only involved a bit of Tylenol/Motrin for pain relief, managing temperature spikes and diarrhea. I spoke with our doctor when following up, the next day. She indicated what happened and explained to me why we had the difficulty placing the new tube. Annabelle has another bruise, located about 8pm from her stoma. That happened one day when she was running and I had JUST unhooked her feed without removing her extension. She ran away from me and the extension (tube that connects to her stomach and heads down towards her knees), somehow got snagged and pulled tightly enough to drop her to her knees in screaming pain. Right away we saw the stomach turn red from where the balloon inside, pulled aggressively hard inside her stomach. She bruised herself from that accident inside her stomach... this is called a Hematoma and the result feels like a solid hard rock below the skins surface. When I pulled the original tube out, I felt something snag it like a pop and then the tube came out. Apparently when that happened, the hematoma shifted her stomach in a direction that prevented the two holes from lining up any longer. That's why when we tried inserting the tube, it felt like we were hitting a brick wall... we were - the hematoma. When the ER doctor accomplished getting the tube in, he managed to scoop deeply around her stomach and around that hematoma which allowed him to find the hole. In retrospect. I should have anticipated this .. I will continue to beat myself up for allowing this to happen to Annabelle. It's a terrible human / mommy / protective mama bear thing that I always seem to do. I promise to her, this won't happen again if I can ever prevent it.I feel so guilty. I just should have known....Meanwhile.
We still have not received any formula. The phone battles continue as I march my way up the ladders to demand explanations for why our medical supplier is determined to not do their job and send our supplies. Every time you get someone on the phone, they give a different story. AK called Monday and politely asked where our child's food was, it's now been nearly a month. They assured him it was shipped and should arrive within the next day or two. Friday I was furious. I am running out of food for my child. We are paying out of pocket left and right for formula from random strangers and begging from generous people that also use this formula to donate what they have until we can pay them back. People are shipping us cans as we parade Medical Supply Exchange Forums and beg. This is absolutely ridiculous that were playing this game with a supplier. I was finally told that the hold was based on insurance denial once again. I spent days on the phone with both Medicaid and our Primary Insurance Company, United Healthcare. No one can clarify who is the responsible party to handle this formula prescription. I'm furious - beyond frustrated and exhausted from this battle that should never even be taking place from the beginning. I contacted a different medical supplier last week and poured my heart over the phone and explained our situation. Were dropping our current supplier and moving all our needs to a different company. They will, without a doubt, save our life moving forward. Granted, it's going to take much leg work, exchanging supplies that were renting (IV poles, Pumps etc) and gaining a new suppliers different equipment and adjusting to the small learning curve. Hopefully, fingers crossed, we can make this change swiftly and efficiently and hopefully have Annabelle's formula in hand as soon as possible! I'll keep you updated.
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