Studying mommy's face.
Everly & Hospice: This is probably the most significant change right now. There was a whisper about discharging Everly from the hospice program but nothing as of yet has come of it. With her diagnosis, our hospice nurse has assured us that the doctor would be less likely to discharge because he knows that her health can turn on a dime. So, while I love the idea of being discharged and pray she is one day, the fear of having no resource to call upon after business hours is somewhat frightening. The ER is really not a viable option for us in our opinion, though each family chooses for themselves. But even hospice has limitations.
Gorgeous girl!
In addition, our hospice nurse went on medical leave starting last week and isn't due back until Thanksgiving. While I have been optimistic about the transition to the nurse covering for ours, my worst fears were realized this week with the new nurse. Truth be told, there's been a few areas of concern for us over the past 6 months with hospice. I haven't discussed them, haven't written about them and haven't even addressed them officially with hospice management until yesterday. The crux of the program is to provide support and comfort to patients and their families in the end days of their loved ones life. But what happens when the patient doesn't respond the way everyone had expected?
Trying out our blooming flower bath. She liked it and a plus is that she can eat while she's taking the bath!
In an effort to be honest, transparent and real, I'll share with you all a few of our ongoing struggles. I would like to preface my explanation by saying that I believe that after yesterday's incident, we might be on the right track now. I could very easily make this pages long so to avoid doing so, I will bullet list some of the issues we've had:
Hospice pharmacy has given us the most cause for concern time and time again. Once by doubling her dose of albuterol at 3 1/2 weeks when she had pneumonia. We didn't catch it until 3 days into her receiving the albuterol treatment. Then repeatedly delivering meds that are supposed to be refrigerated that were warm and clearly not refrigerated. And then if I do not accept one part of the delivery of meds (say, for instance, the unrefrigerated med) then they must return the entire order, not even allowing us to keep the correct parts. In addition, they do not want to dose out more than a mere week at a time of meds having us to continually for 6 months need weekly refills. Not providing more than 1 or 2 syringes with each refill to last a week and sometimes providing none, keeping in mind that ALL food and meds must go through Everly's NG tube with a syringe. A few other smaller issues that just compounded the whole pharmacy issue as a whole.
On Call: If I need to contact a hospice nurse to check on Everly, it is entirely possible they will not have a pediatric RN on call. It has happened to us before. It is also entirely possible for them to need medicine for your infant and the doctor on call is not a pediatrician either. It has also happened to us before. See, hospice mainly, as you can guess, is geared to the elderly sector of the population. So, when Everly had her seizure that lasted all night when she was four months old, the nurse who was on call that night didn't know that rhythmic tongue thrusting could be seizure related. Therefore no meds were prescribed to stop the seizures. Come to find out, there is a "hospice kit" with emergency meds like those that stop seizures placed in the home when they are on hospice. Only we didn't have one and didn't even know it existed. Why? Because they don't have them for Everly's size. Plus, nurses that came to our house when Everly had pneumonia weren't all experienced in pediatrics at all. It's hit or miss depending on the day and who is working.
Doctors: There is one pediatric doctor for hospice (tells you how many ped patients there are, right:). Yesterday was the first time he ever came to visit Everly. He did happen to be touring St. Joe's right before we came home from NICU but that was because he had just become employed with them and was getting the lay of the land. But we don't have any regular doctor visits or check ups, except with our private pediatrician. I also believe we are one of the few private insurance families with hospice. We were told that if we were Medicaid that we couldn't go to the mountains without withdrawing from hospice.
Cute baby sandals my friend Dana's mom crocheted for Everly.
Supplies: Okay, this is probably the MOST stressful of all things. There are certain items, as you can imagine, that Evelry must have just to survive, NG tubes, various size syringes, specialty (not on shelf) formula, cannulas, oxygen regulators, etc. The last time I checked they aren't your ordinary Target items making us dependent on hospice to provide them for us. However, again everything is doled out on a weekly basis. The assumption being that if a hospice patient passes then the supplies and such are unusable then. I'm okay with things being given once a week BUT if the person who visits you each week a) gets sick herself and can't make it to you or b) comes on a Monday week 1 but then Friday week 2 and so on, there's a period of time where you could be without. I can only feed Everly via her NG tube by using syringes (called a bolus feed) or the feed pump which we usually reserve for middle of the night feedings with her supplemental formula. So, time and time again we were left waiting with baited breath for our delivery and yes, once our nurse was out sick and we were in a panic because we had no more feed bags for the pump left and a couple of prescriptions were due asap. The syringe issue is one all on it's own, let me tell you. The syringes are actually single use only but we have to use and reuse each time we feed her. They become stuck and pop when they've been worn too much. Because we are only handed a few at a time, we are VERY careful with them. They have their own bin, place on the counter and never go in the dishwasher. We baby those things. We have been left before with only one "good" to use and it is scary. I know you all with typical kids (like me before) might not get the enormity of that but it's equivalent to you having a spoon for your child but only one jar of food to last a week and a frequent traveler is the only person who can get you more. You worry each day. You know it won't last. And you can't get it anywhere else. Another big concern is that they don't carry many pediatric supplies so when Everly needed continuous oxygen they only had an concentrator with an adult regulator. It wouldn't go as low as her oxygen requirements were. We didn't know that at the time as this was all new to us. We were even delivered adult nasal cannulas for a two week old baby that weighed 4 lbs. Hmmm...really? We did get that corrected BUT it was just one more worry at a time when it was the last thing we needed to be dealing with.
All this to say, this all lead to what came to a head for me yesterday. I contacted hospice yesterday because I still hadn't heard from the new nurse and since we need them weekly, needed her to order Everly's meds and bring her other supplies. I won't get into all the details but let's just say when she arrived yesterday, things went downhill QUICKLY. No assessment of Everly was done, no supplies were received and no meds were delivered and it was Friday.
I was worn out from dealing with all of this week after week with hospice so I called my mom, aka The Bulldog, to take over. She had been past the point of frustration with it over the past 6 months and was ready to make the call. I hadn't called at all about it because I kept thinking it would get better, be patient, offer grace, on and on. So, not once did I call and complain or speak to anyone outside of our regular nurse about the issues. But I was done yesterday. Just done. I knew I had 3 more months without our main nurse and there was NO way I could continue this way. In addition to the stress of having a medically fragile baby and the care she needs, the day to day worries about her health and future, I did not need the additional stress of worrying if we had supplies, begging to get this or that and counting to the last little drop of a med for fear we wouldn't get the next refill in time.
So, there was one more glaring hiccup later in the afternoon, my mom had already called and spoken to a supervisor and was then at an appointment, so I had to call. I finally after all these months shared my concerns, my tribulations and my wishes with the supervisor. It felt good to get it out, voice my concerns and then to know finally that some resolve might come of it. By last night, I had been delivered a bag of 100 3ml syringes, a bag of 100 1 ml syringes and a box of 100 10 ml syringes. The decision was made by the supervisor to transfer all of Everly's prescriptions to my favorite local pharmacy (shout out to Beth and Jeff) and hospice/my insurance would continue to be billed but we were more in control now. The last issue of the new nurse has not yet been resolved and there's still three months left. So, at this point, I am thankful for the solutions and pray for peace and patience for the last remaining challenge.
I have chosen to write about this one because these updates are my way of documenting our journey and two because I hope that we can see some changes in the pediatric hospice program. Look, it isn't right that there is EVEN a program meant for babies, infants and children in hospice. It's not the natural order of things. I KNOW. I GET IT. My daughter is their youngest patient. No other baby with Trisomy 18 has been born at St. Joe's since Everly in February. I verified with NICU and with the hospice doctor yesterday. However, since they do have a patient this young and was 14 days old when she was admitted to their program, we would like to see that it is appropriate for her. There's so much more I could have written and I have held in for 6 MONTHS but I just couldn't anymore. I hope that in the future, they take into consideration the needs of the youngest patients and what enormous stresses their families are under and how they can make things just a tad easier on them. This post isn't A person. It's about making the program fit for pediatric patients better.
Please join me in prayer for our peace in this situation. Please pray for resolution and guidance. Pray for the nurses and doctors who take on this difficult assignment of caring for babies with a life limiting diagnosis. Their hearts must break. Please pray for our sweet Everly as she continues to thrive, grow and defy the odds.
With love and appreciation,
Crystal
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