Compromise or Stand Your Ground

Sometimes compromise can be good, and sometimes we do have to stand our ground. Today was one of those days I had to stand my ground on somethings and then later I was willing to compromise on other things. I did get a lot accomplished even if it was not exactly all I planned on getting done. I did have a productive and very busy day.

What did I compromise and stand my ground with? Well I did both with Apria today. 

I had to stand my ground about not driving the perceived 15ish minute drive to their office today. In reality it is more like a good hour drive, and then through the toll booths too so additional fees as well. I later found out the reason the DME driver was pushing for me to drive out and pick up the pump "because it would be much faster for me to get the pump" was in reality because he did not want to deal with base gate process for coming on base for one person.

Well when I explained the situation and why the pump was needed TODAY and NOT tomorrow Apria was all about making the driver come to me and me come to them. In the end I did compromise too.

 

I compromised and drove out a few miles to meet the DME driver to trade out the wacked out pump. I was NOT willing to drive into Baltimore when their drivers get paid for that and I would have used a more gas than I had available for now until we get paid again especially since we have to drive out once or twice already next week. However, I was willing to meet the DME driver just off base to exchange pumps. 

Well once we got home with Ellie's new pump and got her hooked up again it did not take her long to get all wild and hyper. Amazing how just 45cc's (1 1/2 ounces) of formula an hour can perk up a little body. Even if she was complaining later that she had an upset tummy. 

Oh so glad to have a new and properly working pump. Funniest though was when I got her new pump she had to "inspect" the pump, turn it on, press buttons, make sure it was indeed the same Kangaroo Joey pump, worked, and had the right words that she knew meant she would get food into her body again. She even had to help put the pump in her backpack to make sure it was the right size.

I find it amazing how they pick up in those little things, and funny what makes them so excited. Her new IV pole, pump clamp, new feeding pump, and you would have thought it was Christmas or her birthday today. 

Oh my goodness what a morning we had!!!

Just as we were leaving the house we had a feeding pump backpack strap break causing us to remove the backpack, change everything out, and get a new backpack on. We arrived late to the apt due to this. Thank goodness the office knows Ellie and that she has to wear her feeding pump at all times and the importance of her backpacks and feeding pumps. Backpack malfunction should have told us about the kind of day we would have today...

Next our followup apt did not go as planned. We were scheduled today with the PA. As we were waiting for her to come in all of a sudden Ellie's pump started to make weird noises and I discovered her formula was suddenly spewing all over the place.

Honestly in nearly 8 yrs of tube feeding this is something I have NEVER seen or experienced. By this point Ellie was frantic as her feeding pump was freaking out on her and spitting formula on her, the floor, her coat, and the exam table. I quickly closed her clamp, disconnected her, unzipped her bag, and tried to assess the situation. Rapidly she became more frantic as her pump was NOT supposed to be spewing like it has a tummy.

Looking at the bag holding her bag and the icepack it looked ok but it was SOAKING wet. Flannel hold a TON of liquid by the way... By this time her pump was making very weird noises and now sitting and soaked in formula. Knowing the pump is now supposed to be soaked in formula I let more formula dump on the floor as I tried to free her pump from the bag. Finally the pump was free.

By this point I realized the tubing was jammed and stuck tight. There was no removing the tubing at all.

I left the room with my child dripping in formula standing all confused in a puddle of formula. Yes by this point while it felt like forever had only been maybe 30-45 seconds. I asked an assistant for a mop and help cleaning up the mess. They came in all confused and immediately saw the results the pump disaster.

By this point the PA was in the room as well to see what in the world was causing all the commotion. At this point she too was trying to help remove the stuck tubing which only resulted in breaking the tubing more. Stumped her focus now changed from the original apt to now helping us get a new feeding pump.

With a new pump delivery secured we were able to move on to the originally planned apt, however, we were now running almost 90 minutes behind. Sigh welcome to our family and the effects of Murphy as he constantly gets our family.

ER Trip...Ellie

This brings us to tonight (sigh…)

I called John Hopkins about her today due to her not tolerating her formula at all since yesterday and her cough getting worse in addition to running fevers, vomiting, diarrhea, volume issues, residual drawback through the feeding tube (even with pedialyte), needing nebs every 4 hours, and simply having no energy (not typical or normal for her). They determined that she needed to be seen in their ER. This meant over an hour drive for us. But that also meant that we were seen by dr’s on her team and they had access to her records.

We arrive and finally find parking (nothing like parking at Children’s in CO) and find our way into the ER. We are taken back into a room immediately as she is a pulm/GI/ENT patient and they did not want her waiting in the lobby. We are greeted by the triage nurse and the dr both in the ER room. This was nice as I did not have to tell her story twice. The ER nurse was also listening in by this point.

I went over the fact that Thursday her cough started, she had her comprehensive/new patient apt on Friday, they did the nasal scope and I thought part of the issue may be due to aspiration from the procedure. We talked about the appointment in a bit more detail and I tried to remember the dr’s names, at this point the ER dr started listing all the dr’s that were there. She laughed and told me “I have the ability to cheat and read the records in advance and see a bit about this child. She had quite the appointment with a whole team of dr’s”

While the dr and I talked the triage nurse took her vitals, listened to her lungs, and did the pre-ER admit things there in the room. Then the ER dr took a look, listened and did her things. Once this was all done the ER nurse finally got her turn to check Ellie out. A bit later we were greeted by the on call pulmonologist for her team. He too had his turn looking at her, listening to her lungs, talking with her. After a rapid run to the potty we were taken off for chest x-rays then back to the room, then back to radiology again for abdominal x-rays, then back to the room. This time she just got to wait. With books, my laptop, and small toys she was happily occupied, quietly played, and never left the bed in the room after the potty and x-ray run.

A while later I got a call from the GI clinic (while in the ER) to see how Ellie was doing and to get a better idea about what all was going on. During this conversation I filled this dr in as well as to what we had been dealing with and let her know this was not a new thing for her but reoccurring but it had been several months since the last time. We talked about how after her latest “diarrhea explosion” she regained temporary motility. At this point she looked up the abdominal x-rays and let me know about the ileus and how that will cause her bowels to bounce back and forth and how she felt it was part of the cause for her motility issues. We briefly talked about the EE and she said EE can for sure cause and exacerbate ileus issues. So now we have a 3^rd GI joining our team to help us with our princess… We follow up with them on the 28^th.

The pulm team decided to place her back it on prednisone to calm the lungs and the cough. She has to keep up on the every 4 hour neb treatments day and night for the next 4 nights then we can look at spacing them out again. We have to call in the morning to get her back in later this week to follow up with them (as well as call our peds dr to follow up with him this week as well). The pulm dr also noticed that her liver seems enlarged…

She is out of school for tomorrow for sure and possibly Wednesday, depending on her energy level. At this point having been taking naps all weekend long and today I am not sure she has the energy to make it through a full school day right now anyway.

As far as getting her back to eating? Right now I have more questions than answers right now. It seems once again we are at a point of every time we go in they are back to finding something new. Just when I think we are getting close to moving from the idiopathic realm to “diagnosis is:” something new and unexpected is thrown at us. I know I surely was NOT expecting anything along the lines of EE… I know we will not know for sure until they do the biopsies and other testing they have discussed. While many of tests results they are discussing will be weeks out, just to know would be nice…

I think...

Finally Updating

Well so much has happened since my last update…

During the Feeding Tube Awareness Week we had our world turned upside down when our daughter was once again placed on 100% tube feeds due to aspiration issues. Since then we had our appointment with the ENT, Pulmonary, GI, Swallowing, Nutrition… team that specializes in children like Ellie, children with Laryngeal cleft and malacia issues. First off just discovering there is a group of doctors that deals with others was comforting in a way I can’t explain. Finally, she is not alone in her cluster of diagnosis issues.

We talked in depth about her birth history, prior hospitalizations, surgeries, biopsies, eating patterns, sickness patterns, repeated bronchitis and pneumonias, prednisone scripts, so many different things. While one dr was talking to me another talking with her about how she gets sick, how her lungs feel when she gets sick, how she eats, what happens when eats, what foods does she choke on and how it feels.

Then the dreaded part of the appointment for her, a nasal scope while eating and drinking. The surprise here was how swollen her throat is around the vocal cords. The dr’s saw an indication of the laryngeal malacia still present. What is confusing is why her reflux meds are not working if this is the cause of her swelling and throat inflammation. Everything was also very red.

During this appointment they also brought up a new possible cause for many of her issues, Eosinophilic Esophagitis or EE. We talked about getting her scheduled for the OR asap to get her cleft surgically repaired as we know this is a serious issue for her and has caused her severe issues for her lungs. During this OR trip they are doing both bronch’s again, hard and soft to look for signs of malacia, bronchial, tracheal, or laryngeal forms. At one point she had all 3 in addition to subglottic stenosis. They are also going to take a good look inside her lungs again to see if she is growing anything in there, take biopsies of her esophagus to test for EE and other EE related issues. At this point I forget what else they talked about.