The last couple weeks have been some of the most disorienting, disconcerting, stressful weeks of my life. I feel like I've been in some sort of cosmic rock tumbler - never doubting that our lives would emerge more polished and more able to reflect Christ, but also distinctly disliking the tumult and the throwing to and fro!
I'm going to give the briefest possible rundown. I'm doing it primarily because much of our lives as they relate to Noah have been tossed around and there is no reason to hide the changes. I know you may be left with questions - we are still asking questions ourselves. Some may never be answered and some we may not choose to answer publicly.
After a lot of phone meetings, long talks, and meetings, the decision was made to pursue enrolling Noah into hospice a week ago Friday (8-16). While this decision was inevitable, the timing had more to do with logistics than with any huge change in Noah's medical status. Our wonderful nurse manager from the Medically Complex Children's Waiver recommended a hospice agency and last Friday we met with two representatives from hospice, two from our private duty nursing agency, and Dr. B (Noah's pediatrician). Everyone was in agreement that it is now appropriate to have hospice involved. Without hospice, there would be no real way for us to keep Noah home and he would probably go back to being admitted for every single illness again. While Noah is hospice-appropriate, this decision did not reflect a huge change in his health so much as it reflects a huge change in his health care needs.
It is essential to understand that pediatric hospice is very, very different from adult hospice. Under hospice, Noah can and will continue to receive every treatment and medication he is currently getting. He'll get surgery when he needs it. He'll get blood when he needs it. Nothing is taken away - this is a service which is added to the other services he receives. It is theoretically possible for him to remain a hospice patient for years and this does not mean that we are "giving up" or going to comfort care only.
To be honest, I myself was not ready for hospice to be involved and I struggled tremendously. It felt like the decision and timing were taken completely out of our hands. All I wanted was for things to stay the way they were. The meeting itself was very stressful - even though everyone involved was very pleasant, these sorts of discussions are nothing but torture for a mom's heart. It also turned out that his DNR had expired (who knew they could expire??) and had to be re-done. More torture.
At the end of that completely draining day, Jeff and I had to run to Greenville for some needed shopping. We said goodbye to our nurse and headed out. At about 5:15 PM I got a phone call from the scheduler from our private duty nursing agency saying that our nurse - our ONLY nurse - the one that works full-time - had a "change in her availability" and would no longer be assigned to us effective immediately (as in "too bad she's the only nurse on the calendar for the rest of the month and you were expecting her tomorrow and it's now after hours on FRIDAY and she is supposed to work this weekend and all next week - we reassigned her and are just now getting around to telling you this.")
We were only given the explanation that sometimes other families have "more critical needs" (unrelated to the child's actual medical complexity) and therefore nurses have to be reassigned. As of the end of last week, no nurses had been found who had availability and the skills needed to care for Noah, so we felt we had no choice but to terminate our relationship with our nursing agency and move forward with a new agency.
I interviewed a new nurse on Tuesday and was pleased with the nurse AND with the new agency's policy of not ever pulling nurses from one family to another simply to fill scheduling needs. She is supposed to orient on Wednesday and we hope to have her working M-Th each week with the agency working to find someone to cover Fridays, Saturdays, and Sundays.
Concurrent with all of this, we were told that we would need to switch away from our very, very beloved infusion pharmacy. Only a mom who has relied on an infusion pharmacy can begin to understand what a treasure a wonderful agency is. This company mixes and provides all of Noah's IV nutrition, hydration, meds, supplies, etc. We have a very strong relationship with our infusion nurse, the pharmacists, and others at Intramed. They have bent over backwards for us a zillion times and have gone waaaaay above and beyond to do what is best for Noah. The whole problem was a hospice-related billing issue which I am very thankful to say was finally resolved.
Writing this makes it all sound so much more simple than it has been . . .
. . . I was exhausted and bruised of heart from the formal hospice admission when I got that call just hours after the meeting saying that we had no more nursing and no one had any idea how long it would take to find/hire/train a new nurse for us.
. . . I was approaching zombie status last Monday as I fielded HOURS of phone calls, met with hospice personnel at the house, and agonized over our nursing situation all while doing all of Noah's nursing care on my own. His nurses work HARD during their 9-5 daily shifts and while I am happy to care for Noah and perfectly capable of doing 100% of his care, the start of our homeschool year isn't really a great time for me to essentially take on a 9-5 job on top of everything.
. . . We've had to deal with the loss of our home health nurses (that came about an hour/week to do labs) as the hospice nurses will take on that role. Noah was fond of them but it is in his best interests to simplify and reduce the number of cooks in the kitchen.
. . . We've had to deal with the loss of not just our deeply loved private duty nurse, but the loss of everyone from the entire agency. We've had nothing but fondness for any of them and I will miss working with all them.
. . . We've had to deal with Noah's grief and confusion. He's had the same full time nurse since January and he didn't even get a chance to say goodbye. He loves his nurse very much and we can't give him a satisfying explanation as to why she simply disappeared from his life. He's anxious, afraid to have anyone leave the house, afraid to go to sleep without me in bed with him, and just clearly very confused.
. . . .We've had to deal with what we believed was the certainty of losing our wonderful infusion company - the fact that this one issue was finally resolved didn't lessen the heartache of days spent believing that we would lose them.
. . . I have spent nearly every waking moment since a week ago Friday either providing direct medical care to Noah, taking phone calls about Noah, meeting with people related to his care (and trying hard to remember all of their names!), and basically just hacking at miles of red tape. Any spare moments have been spent trying to get our school materials sorted and organized, writing lesson plans, and trying to find little windows of time to invest myself into the other children. (Oh, and these children of mine seem to think that they need to eat three times every single day LOL!)
I grabbed a short window of free time to day between meds to run around the corner to Walmart only to have the bus not start when I tried to leave. I was able to call a friend who was heading to our house to a visit and she picked me up and brought me home. I have NO idea what we are up against here but right now our bus is sitting in the Walmart parking lot. Sigh.
The cosmic rock tumbler is finally slowing down. I'm being gently tossed around and around and upside-down instead of being hurled about at top speed. The miles of red tape are almost all shredded. I'm still slammed with meetings and phone calls but they all have a feeling of moving forward now instead of each call seeming to bring more hassles or difficult news. Orienting and getting to know not just a new nurse but an entirely new agency will be very difficult and time-intensive but as that time investment starts to pay off, the scales should tip and the nursing will start to take things OFF my plate instead of putting more ON it.
I could not be more happy with our hospice agency. The nurses have been incredible at jumping in and lending me a hand when the can. Just today they were here and told me that someone had anonymously donated a massage for me - I just about cried.
I truly feel that we've turned a corner and that things will start getting better and better soon. I'd like to think that in a week and a half we'll have started to hit our stride with the new agency and we are praying our hearts out that they find a second nurse ASAP.
I'm still more exhausted than I can express. Noah's care is very, very, very complex and time intensive. There is absolutely no margin for error when dealing with central lines and dozens of IV meds per day that need to be prepared, drawn up, labeled, and administered. He's not able to do anything for himself and his care is just truly incredibly involved. Even though I worked closely with his private duty nurse on some tasks, I could also take a little while to be mentally "off duty" before she left and I once again had to be fully "on duty." Every single move I make revolves around when his next meds are due and what other nursing care I need to give (line changes, maintaining his drain lines, changing his dressing, bathing and dressing him and caring for his skin, washing out his bladder, applying topical meds, administering breathing treatments, hanging new bags of IV fluids/nutrition/meds, etc.) Just yesterday he needed his sheets changed THREE times - with all of those bags and pumps and drains, leaks just happen and yesterday was a banner day for nasty things leaking out on his bed. This alone is a massive undertaking as it involves a complicated transfer of him with all of his lines and drains into a chair and then back into bed.
Please pray for truly superhuman energy for me. I often have tears running down my face just from yawning so hard. Please also pray that we get back to 7 day/week nursing FAST and that our new nurse (eventually nurseS) have wonderfully fast learning curves and that they fit well with our family. We also need prayer for this bus of ours to just start and for funds for a replacement bus to come in quickly. I'd appreciate prayers for clarity and organization as I try to wrap up lesson plans and get our new homeschool year started well. Of course, please continue praying for sweet Noah. He has been exceptionally tired even for him and most of his time is spent sleeping or lying down resting in bed with just very short spurts of play.
Thank you all for your prayers and your patience as I've been so silent. The status of pretty much every single aspect of Noah's care has been changing sometimes hour to hour as I've dealt with bureaucratic hurdles and dealt with hours of phone calls daily. Not only only did I not have time to update, but any update would have been obsolete nearly as soon as it was posted. I'm only now feeling that we have turned enough of a corner to give an accurate update.
Blessings,
Kate
