Annabelle woke up in a fairly good mood this morning, she was lively and active, she was smiling and talking. I love seeing my little girl 'alive!' (I say that not in a morbid way, but simply awake, well and living life the way she should vs her sad normal these days). A few doctors came in to make their rounds and I waited for shift change before contemplating breakfast. All I knew is that the night was longer than one I've ever lived, my head was spinning and I wanted out of our room.. So did Annabelle. We loaded up our wagon and made our way outside for fresh air!
I wish I could report more on the Annabelle front of how she's doing but there really isn't much to say. I am irritated that we didn't get an opportunity to do any bolus feeds today and I didn't learn we needed to do one until 20m before she starts her night feeds. We've determined she needs to be taking at least 16oz orally each day. today she only drank 12oz on her own. Since her goal is 16oz, I can just give her the remaining 4oz by bolus and keep the day going. On the days she drinks 18oz, wahoo! On the days she drinks 5oz, I adjust our feeds as needed. Simple enough. More often than not, it's going to be the latter of the two scenarios.
Annabelle slept for most the day. Unfortunately, it was a tough down day for her. She wasn't quite herself by 10a. i took her to the hospital playroom and she had little interest in playing, she just asked to go night-night.
After a long nap and spiking and dropping temperatures, she woke in not such a pleasant mood. I tried to use our time by giving her a bath (her favorite thing ever beside bubbles!) she enjoyed it, but it was short lived. It was just a really hard day. She's been very sleepy and not feeling well.. Clingy and snugly and whimpering too often to tell me she's doing alright.
Annabelle's blood pressure has been all over the place all day today too. Yesterday it was consistent and normal, today it has either been concerningly low or too high, not much in between. It varies depending on whether or not she's waking around.. But not to the fluctuation that they've been seeing. It's being noted and monitored constantly, so well see if anything comes of it.
Here's what is on my plate:
In home assistance.
The attendant I hire is interviewed and employed by me under Annabelle's EDCD (Elderly/Disabled Consumer Directed) Waiver. It allows me to hire someone and bring them into our home to help care for Annabelle because her needs are so high.
However! At this point, because of her list of difficulties, needs, constant medical attention and now continuous pump feeds, our service can no longer be consumer directed (hired by me and managed by me as to who I want to use), it has to be Agency Directed and she is required to have an RN in the home with her for all her care from this point forward. Based on her needs assessment, we qualified for 16hr/day x 5 days a week.
I've been interviewing and finally hired someone just Monday - now I get to start over and learn all the new guidelines and navigation around this new service. If anyone reading has experience working with an EPSDT, please message me if you have any tidbits of advice as we get started. I spoke with a facilitator at Pediatric Connections and outlined what I am looking for, however finding someone to take the position that fits my needs could be an issue. At this point, we are going to only look for care while we are working and not use the hours to cover her nighttime feeds - if/when circumstances change and we need help, at least we easily qualify and could use those resources when I push the panic button! ;)
Fingers crossed we hear something soon... Otherwise I am child-care-less! Ugh
2) Lincare Medical
If you've been following for quite a while, you may remember the bad taste I have in my mouth with Lincare.
Lincare is a medical supply company that ships all our medical needs to our house every month. Her formula for example can only be ordered and shipped from the manufacturer and Lincare takes care of this for us. And trust me, it doesn't come without an incredibly marked up price to provide this service either! On one occasion, they had an 'error' and forgot to ship Belles formula.. When I noticed we were getting low and panicked I called and they said it would be delivered in 5 days. She would run out by then! A dietician was being sent to our house with a couple cans of formula to carry us thru until the shipment arrived - she never showed. I called their numbers with no answer, I left messages on the emergency after hours line and never got a call back. My kid is solely dependent on this one formula and she had no food for days! I found a hospital in Richmond with a spare can in the NICU, so obviously belle survived.. Although I was furious. Never even got an apology. We dropped them, however when our insurance changed, they were the only ones that would work with us and here again, we're using them.
So, back to the topic (bare with me, it's 3:11am). Lincare has erked me again.
The logical plan for when you start tube feedings like this is to become trained on the equipment and how to operate, navigate, troubleshoot everything you will be using at home - while you're in the hospital. Sounds easy and proactive, right? That was the plan at least.
Since we use Lincare as our medical supplier already, it only makes sense we will continue to order our supplies thru them. As of this morning a representative was to meet us in the hospital and bring all our new 'goodies' (shoot me). They need to bring me the pumps, IV cart, feeding bags, Belles backpack, all tubing supplies etc. Once they teach me how everything works, I would setup my own pump here at the hospital and I would be able to administer all her feeds using our own stuff and ask questions if I need help or get stuck. (All the hospital equipment is different from what we will have at home so it's pointless to learn their system..)
This afternoon, the case manager that I have been working with all day came to share the frustrating news. Since we are in Norfolk and not Richmond, the Norfolk office won't give me the supplies to keep and Richmond won't travel to bring me our stuff at CHKD. A Lincare rep came to our room with an old pump that's 'similar' to the one we will have at home and showed me how to cut it on / prime etc. Once I was finished looking at something that appears Japanese to me, she tossed it back into her bag and started to leave. I stopped her and asked about all the tubing supplies, she looked terribly confused. She asked me, "Isn't this for a gtube?" My head snapped so fast towards Belle, you would think it was going to fly off my shoulders! I mean really woman?! Did you look at her face?! You can't tell me there is anyway you missed that! Her DOH moment was over and she apologized and promised she would handle the confusion.
I had my doubts but I gave it a few hours before I walked to the Case Manager for Annabelle to ensure Lincare had all the correct information and orders for what we will need.. I got a call sometime later from a girl (I swear she was 12) with Lincare in Richmond. The lady was calling to arrange a time to meet us at home tomorrow - I'm not sure what time, I have no clue when we will even get discharged. She needs to be at our house as soon as we get there so we can set everything up at home and be ready to start feeds. She prematurely suggested her afternoon is heavily filling up. i have no patience. "I understand if you're busy tomorrow afternoon, if you will not guarantee you'll be at our house, you need to make sure someone else will. Either that or Lincare here in Norfolk needs to give us our things and your offices can work out the logistics. My daughter isn't waiting until schedules free for anyone, do you understand?" Apparently that rang loud and clear for her.
She wasn't informed that we need NG tube supplies either.. That message never got relayed. She told me that they do not carry any of those supplies on hand and she can order it all for our first shipment. That won't work! So what happens when she pulls her tube out on Saturday? Fortunately the sweet nurse was standing in our room and overheard the conversation I was having over the phone, she laughed and winked at me and whispered "hunny, they're all ridiculous! I'll make sure you have everything you need before you leave, because I promise you'll get stuck empty handed when the time comes and you need to change her tube without any supplies."
So needless to say, there is still leg work that needs to happen with our medical supplier. I am heavily considering making the switch to Pediatric Connections, but I need to get thru this first.
3) Hopkins - Genetics
I called and spoke with several people in genetics today. It was quite frustrating and appears that they are trying hard to schedule me for a consultation as if I were a new patient for the first time to discuss our story. I hate telling it over but I will do so if necessary. however, I spoke with a large genetic team while we were there so that leg work should already be in place. I don't want to be wrongly scheduled for something and waste a day traveling or a doctors time if it isn't necessary. Unfortunately, it appears no one can tell me what to do so I left plenty messages and will hope I get a call back soon.
AK finally made it down today. He's been home with Mady to maintain the sliver of normalcy we still have. I told him to come down likely the day before we leave so we can learn to use the equipment together.. Well, at least he's here. Annabelle is such a daddy's little girl and lit up when she saw him!! :) I also needed a small break to actually sleep.. Maybe eat and pee if I allow myself. He arrived and we had dinner right before we were ready to start the night feeds, at least he could see the process and participate. Annabelle is struggling to get used to her new tubie. She gets really upset if you come near her to touch it - she's scared you're going to hurt her and hasn't understood that just starting the feeds is not painful. It will come soon enough..
It's now 4:30am. My sweet baby Belle is snoozing so softly beside me as I listen to her pump filling her with plenty nourishment.. This wretched device is already growing on me. I love knowing that my little girl is getting everything she needs right now. When we get home, I have no doubts I won't be completely overwhelmed.. Reading ounces vs mL, feed rates, and pump bags.. It's enough to make you cry just trying to learn the terminology!
Pump Lessons To Take Home
I'm awake right now because the pump started beeping for an error a little after 2am. If this were my own pump, as it should be, I would have embraced the opportunity to troubleshoot with a nurse and learn this thing.. But it's not our pump and I'm already clueless. The nurse came in and checked several things, the pumps error message read 'clog in tube', so she flushed it.. Without issues. Restarted the pump and it makes a different beeping noise but without an error message. What does she do? She gets a backup pump (that's great! Something Lincare refuses to give us. they are giving us only one pump to use both routinely at home and then dismantle from the IV pole and use on the go or around the house and not stuck to the pole), I don't have the luxury of a backup pump! Once it was setup she left. 10m later that pump too went off.. Three errors: Kink in tube. Issue with the rate and issue with the bag. I chuckled and collected our nurse once again. She pushed everything she could find and then consulted her side kick. Together they decided to get the feeding pump wizard to check it out. They all worked on every aspect of this pump and basically replaced every single thing except her actual placed NG tube. No luck. They install pump #3. Within minutes that pump too is beeping. They go pack to pump #1 and somehow it worked. They also moved it to the other side of her bed and another outlet so who knows if that made a difference or not.
My point is this
All I learned tonight is that if I can't figure it out: either get my spare pump or catch the guru walking down the hall.. I can't exactly call AK or myself a guru, hell, we don't even know how to secure the damn thing to the pole yet! We also don't have a spare pump as backup so my learning experience for troubleshooting tonight was worth about $.00 / nothing. I'm not bitter, I'm just scared to death to go home responsible for a feeding tube I don't know how works nor how to place it and a pump that I've never operated! It's a setup for failure and I can sense my anxiety rising already :( this is what I am most nervous about! I guess I need to get on YouTube and start learning on my own!
Annabelle's vitals were just checked again and she looks great. She's such a little trooper thru everything, I'm so proud of her. She hasn't touched her tubie since last night when I pushed it back in and she lost her mind, I secretly hope it scared her enough that she doesn't touch it again. The tape that's covering her face is very likely made by the same product that makes super glue. In the places I want to pull it off, it's stuck. In the most critical areas it needs to not move, the tape refuses to stick. I need help with this. And also with better tape options for a kid with terribly sensitive skin. Myself, Mady and Belle all have a latex allergy and react even worse to paper tape etc. her skin is already irritated from being taped but I don't know what to do. I also don't know if this means we will have to switch sides to give her face a break.. Ugh, initiate panic attack!
I cannot wait to go home tomorrow, I hope everything is still cleared for us to leave. I need my bed, I need sleep and I really need Mady. I miss her so much! I am not looking forward to what our future holds for us in our house when it comes to these feedings, but I do look forward to learning so I can relax all these fears and worries over what I don't know! As soon as I am educated and confident i know what I'm doing and I'm not going to accidentally kill my kid, then I will be ok. Until then, I'm still bitter, I'm still resistant to this glory of the tube and I'm still heartbroken for my daughter everytime I look at her smile and miss it because i see tape across her face :(
I'm blinded by it and it is shattering my heart. With every giggle and sweet word, every spontaneous kiss she keeps sneaking,I feel nothing but a flood of guilt :'( I know this is temporary, the mourning. It just hurts and isn't being embraced as a welcomed new normal. If I could lie to myself to trick my mind into accepting this, I would!
Soon it will become our normal and I won't see the tube, I'll only see my Annabelle. Soon the machine churning will become as ignored as the repetitive 'mama, mom, mummy, mommy' in my house. Soon my baby girl will be nourished and begin to thrive. Soon we will start to see her true symptoms to lead our next diagnosis and they will not be skewed systems that were only relevant to malnourishment. Soon we will have answers. Soon Annabelle will grow to be stronger than ever. This is a good thing, this is what our family needs to drive us towards hope and healing.
I can't wait to get this strong little girl home.
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