Morphine Pump

True to their mantra, “Anything that can be done at the hospital, we can do right here at home”, Hospice fitted Debbi with a morphine pump yesterday.

Lets back up a bit. Lyn, our Hospice coordinator who has been (and I am sure will continue to be) a fantastic resource to Debbi, to the kids, and to me) stopped by yesterday around lunch time just because she was in the area visiting another patient. She asked Debbi how the pain management was going and after listening to Debbi, Lyn said, “I think things would be easier with a morphine pump.” A tall lady with a winning smile and a kind demeanor, Lyn grabs her cell phone, struts out of the bedroom and starts dialing like mad. Pretty soon calls are coming in on the house phone for Lyn. For a moment I felt like I was back on a trading floor in New York City. Lyn had the cell phone to one ear, the house phone to another, she was writing notes, barking out orders, and coordinating the drama that would soon unfold.

Within an hour, there was a knock on the door. Home Solutions Infusion Network was delivering the physical morphine pump. I had to sign a myriad of papers including one that says that if the pump is not returned, my credit card gets hit with a $5000 charge!. I started admiring the pump which is slightly bigger than a deck of cards. It has a provision, just like the bigger models in the hospital, whereby it squeezes the fluid line from a reservoir of medicine pushing it forward according to the programming set by the nurse in conjuncton with a pharmacist.

As I was admiring the pump, which can dose out fractions of a milligram and has a push button for break through pain, there was another knock on the door. This time it was a delivery of the actual morphine and resources to access the port in Debbi’s right shoulder.

Knock Knock. It was Margot, another of the hospice nurses here to access the port and to hook up the pump. Knock Knock… in walks Lyn. “How is it going”, she wants to know. Her actions began with calls to the doctor and pharmacist as well as to the team described already. Lyn herself came back to oversee the pump hookup and to describe its use to Debbi. It seemed that within an hour Lyn managed to contact all the parties and coordinate the operetta that concluded with the regulated flow of pain relief straight to Debbi’s blood stream. After visiting a while longer and sharing some stories, Lyn said good bye, but this was not to be good night.

Shortly after Lyn left, the pump started beeping. I looked at the display and read its error message, “Down Occlusion.” What does anyone in that situation do… first silence the alarm so it does not disturb Debbi and then call the emergency number that Lyn left me. I followed her instructions and left my call back number as requested. Not content to simply wait for the pharmacist to return my call, I figured that occlusion meant that the tubing was kinked so I straightened all the lines and convinced myself that there were no kinks. This did not restore the pump to operational mode. I wasn’t left a manual… I would guess that the team does not want people tampering with the pump although I was told that there are about 7 layers of passwords… (Between my son Aaron and I, we can break any passwords… but he is the one who know how to break this one and he is not here right now!! …  could not help myself… it is an old joke). So, I looked up the unit on the internet and under troubleshooting the diagnosis of a down occlusion meant a restriction in the line between the pump and the patient. Again I went over the tubing inch by inch (ok ok.. no Niagara Falls jokes now… I promise I wasn’t drinking last night) and I discovered that in the short supply tubing that terminates with the needle that penetrates Debbi’s port, the tubing had a kink in the space where the clamp sits. The clamp is a small white plastic structure that snaps to prevent fluid flow. The dongle (8 inch run of tubing from the needle to the access connection) is delivered with the clamp snapped. The clamp was surely open now but somehow, even though it was open, it was not open fully so the constricture of the clamp opposite the kink from where the clamp’s force had been applied during shipping served to restrict the flow to the point where the alarm was triggered. I simply readjusted the clamp and the alarm cleared. 15 minutes later Jim (the pharmacist who had assisted with the morphine… I recognized his name from the arrangements that Lyn was conducting) was calling to offer assistance. He complimented me and offered some further suggestions for using the pump effectively.

As anyone who has been on or near such a device knows, the patient can press an attached button to trigger release of additional pain killer. The computer on the pump is programmed to release medication based on a slow continuous basis as well as a bolus in response to a press of the button. However, the computer is also programmed to allow a bolus release only once in a certain measure of time. In Debbi’s case, she is allowed one bolus every 30 minutes. If she presses the button more frequently, the bolus is not delivered more often than allowed. However, each button press is recorded and the nurses and the pharmacist use this information to calibrate the dosing rate of the main delivery channel. Last I checked, Debbi had pressed the button 9 times and 7 of those times a bolus had been delivered.

At around 9pm, Lyn stopped back to make sure all was going well. Her cheerful smile told me that she was indeed happy to have brought about all this assistance to make Debbi comfortable with the understanding that her teammates would be analyzing Debbi’s pain and button presses to further refine the dose rate. As Debbi settled in for the night I thought back to the mantra and decided that Lyn’s care really exceeded that which we would have found in the hospital. Plus, the hospice nurses are better looking!

Slipping a bit

Comparing Debbi’s condition today, on an objective basis, to that of a few weeks ago when we first came to the Cape, we are forced to admit that Debbi is slipping. Her sleep/awake cycle tends heavily towards the sleep side… in fact she might sleep more than 22 hours per day… some sleep, no doubt, brought about by the drugs she is taking for the pain. Even when she is awake, she tires very easily and our visits to the hydrangeas are becoming more difficult or not possible at all.

After Debbi had good days on Friday and Saturday, I was inclined to drive to NYC to pay a shiva call, work at my office for a day or two and return to the Cape Tuesday night. Before I even reached the New York state line, Rea called to say that Debbi threw up a few times and that I needed to return. I basically paid the shiva call, checked the apartment, and drove right back here. You might have read that in yesterday’s posting, Debbi’s desire to visit with family and friends tired her beyond what we had anticipated… and for now, visits have been postponed.

As we pass the door to Debbi’s bedroom, we take note of her as we go by. Time was that she would hear a particular floor board creak just a bit, even from a gingerly placed footstep, and wake to see who was there. Now you can step on that floor board full force and she does not stir. Often times Debbi’s bed, “Mom’s bed” was the central meeting place for our family. Now it is quite quiet indeed. Life in the Cape house does goes on around her but the heart of our family seems like it is slowly being tugged from our hearts and from our very midst.

Visitation Update

After two visits today, Debbi became very weak and nauseous and the visiting nurses were called in for support. Under their advisement, all visitation has been postponed until further notice so we can give Debbi time to rest and regain her strength. 

In the meantime, we encourage everyone to continue sending their love and support, be it via email, sending cards and flowers or calling Rea for updates (973) 493-7495.

Visiting the Hydrangeas

Yesterday we accompanied Debbi to the hydrangea bed in the front yard and camped out there for a short visit. The buds were beginning to open, the sun was shining brightly, and I know Debbi enjoyed its warmth. Usually Debbi has to be dressed in many layers to go outside due to the chill in the air but once she was situated in the sunshine, she actually was more comfortable in just a fleece without her heavy overcoat. Besides the hydrangeas, we all sat around her as well sharing stories and watching our grandson roll in the grass. 

Today Debbi is expecting company. Her two 30 minute visiting windows are filling fast. Last I checked with Rea, those slots are filled through next weekend. Visitors are great for lifting her spirits and for bringing her motivation but she does become tired easily. As you recall, Debbi was hospitalized in New York for 11 days and here on the Cape for 4 days. She was given the IV Vancomycin along with Augmentin twice per day and that regimen only concluded 3 days ago. On average Debbi is sleeping 18+ hours per day and we want to insure that she has every chance to regain some strength. Call us overprotective, etc. but until she is eating well and has the energy and balance necessary to walk some distance on her own, we feel that her exertion must be guarded and Debbi, sadly, is in no position to do that on her own. Rea has been filling many roles quite well and she is now functioning as “gatekeeper.” 

We are hoping that along with the warmer weather about to arrive, Debbi will be able to gain sufficient strength to once again qualify for active treatment.  

Resting Comfortably

Debbi seems to be getting used to her routine her in Cape Cod and she has not spiked a fever in days. The Vancomycin IV ended a few days ago and we are happy to report that the fever has not returned. Debbi’s pain is being managed via a combination of drugs from a vast array that have built up over time. We were told by the visiting nurses to be somewhat flexible in this area and to let Debbi decide which combination of medications she prefers. We have done just that.

While she does sleep much of the day, we try to take her for an outing to see the hydrangeas each day… sometimes she just views them from the front windows. Yesterday we bundled her in her fleece and winter jacket and headed outside. We quickly discovered that the transport wheel chair provided by Hospice did not perform well on the grass. We took a different route down the driveway and along the road fronting the property. There was ample opportunity to view the buds opening, especially those at the bases of her 30 bushes. You could tell that this lifted her spirits. Once we were outside, we headed toward the beach but here again, the transport chair did not do well at navigating the gravel roadway leading the last 100 feet. So, I guess finding a different chair, maybe a motorized version with wider tires, will be on the agenda today.

It is not that Debbi can not walk, it is just that she seems to tire quickly after short distances so a wheel chair is useful to allow her to enjoy the outdoors without worrying about getting weak along the way. Speaking about weakening, Debbi’s appetite has been improving a bit and now that Passover is over, it will be easier to offer her a wider variety of foods. Wonder what she might order today?

Thanks again for all the prayers and good wishes.

Hospice Care

Debbi’s Journey has moved into hospice mode. Reading that sentence a year ago would have been very scary because I did not really know what hospice meant. I thought it only meant that the patient was on their last legs. Technically, here in Cape Cod at least, it means that there is an expectation that the patient has a survival time of less than six months. That being said, I have heard stories about individuals who have lived years under hospice care and have heard about some hospice patients that have even taken vacations and cruises with their families. Further, the power to return Debbi from hospice care to palliative care and even to aggressive chemo / radiation / etc. lies with us. A quick phone call to Dr. Lovett removes us from hospice and yet the same nurses provide very similar benefits under the heading of palliative care.

Debbi’s status changed from palliative care to hospice care following her visit on Friday with Dr. Lovett and his team of skilled nurses. Debbi has been on palliative care and has been receiving Vancomycin IV and Augmentin PO under the care of the Visiting Nurses. During the visit with Dr. Lovett, we reviewed a Chest XRay taken 30 minutes before the appointment and happily noted that the result showed no appreciable change from the XRay of 4/2 and also no change from the XRay of 3/30. This was definitely good news because we do not see rapid advance of the cancer and we do not see rapid transitioning of the spiculated densities (or maybe spiculated cells… I am not sure of the proper designation) into the cavitated nodules. Thus, we still have hope the the one or two cavitated nodules that were seen resulted from a pneumonia process and not from a cancer process.

With that good news, you may ask, “why the transition to hospice?” The reason is that the infection has left Debbi very weak. To subject her to more chemo (a toxic agent afterall) in a weak state, is very dangerous. Choosing the hospice designation expands her home care possibilities and gives her a better possibility to improve her health and her strength. Later that day when the visiting nurse came by to adminster the IV antibiotics, Debbi signed the hospice papers as well as a Do Not Resucitate order. Hospice was contacted with her medication list and notified us that they will now be providing all her medications directly. No longer is there a need to go to the pharmacy to fill her prescriptions. I asked if they would take back (and perhaps give us a credit? ) on the many unused pills sitting back in the NYC apartment? Their expected reply in the negative leaves us either with disposal or trying to sell them on our own. A blurb on the Police Blotter page of the NY Post a few months ago concerning someone caught trying to sell a cache of Oxycodone (Debbi’s pain medication for most of the past year) indicates that simple disposal might be the best choice.

Passover Seders and Shabbos were all the more special because we truly appreciated Debbi’s presence at the table and the messages of love and caring that she shared with each of us. This was due to her inner strength assisted by the fact that one of the Visiting Nurses responded to our observation that the combination of Oxycodone/Oxycontin was too strong by suggesting that we should switch to the Morphine family. The transition was made to a fast acting Liquid Morphine (with a generous dosing range of 5-20 mg for break through pain… we have been using 10mg as necessary) coupled with the longer acting MS Contin 15mg every 12 hours. MS Contin is a pill which delivers Morphine in a time-release fashion. Thankfully this combination seems to be working well. Debbi was very lucid and explained her thoughts clearly. While her message brought tears and joy, at least she was able to share her feelings without being reduced to incoherent speech by drugs that were too powerful for her metabolism. Thus Shira & Leo, Josh & Katherine, Aaron & Stephanie, Rea & Shuie & Yonah, and I were privileged to be together with our favorite family member and to share her LOVE at this time in such a meaningful way.

Early this morning, Debbi awoke with a 102.9 fever. Any blog follower would know that this elevated temperature would have set off a trip to the hospital where Debbi would have been evaluated and then given saline and IV antibiotics. Instead, I gave her 1000mg of Tylenol, started the Vancomycin IV (after removing it from the fridge and bringing it slowly to room temperature) and then called the Visiting Nurses for further guidance. I was instructed to ensure that she was not under layers and layer of blankets and to use cold compresses and that a Visiting Nurse would check in later and be on standby if the fever did not break. The fever broke eventually and Debbi was far more comfortable staying at home.

A FedEx package arrived for Debbi today from the Hospice organization consisting of a Medicine Chest to be used only under the instruction of a Visiting Nurse. Had the chest come earlier, I might have been instructed to administer a different drug or to follow some other procedure. The ability of getting rapid treatment is certainly a blessing.

In addition to watching her temperature, under Shira’s guidance, we purchased an oximeter. This consists of a spring device which “clamps” over ones finger. Two wavelenghts of light from harmless LEDs shine through the finger and the differential absorbtion can be used to measure the percentage of oxygen carrying ability of the hemoglobin. This value is displayed along with the pulse and a confidence light to assure the operator that the unit is displaying a valid reading. Along with the fever, we noticed that Debbi’s oxygen level was at 74% when 88% in a hospital would require use of oxygen. Thanks to hospice, we have a oxyengenation machine and 3 standby bottles of oxygen. Shortly after adjusting the cannula to Debbi, we were reading oxygen levels of 94% and eventually as high as 98%. Much of the day now she is wearing the oxygen cannula and is getting used to the noise of the compressor. Thankfully, it is not nearly as loud as the HEPA filter in our hospital room at Sloan Kettering.

Debbi was able to go for a short walk to a window by the front door where she was able to see the new buds beginning to open on the hydrangea bushes near the front of the house. It brought her pleasure and we are hoping that she will be privileged to witness their full growth into pom poms this season and indeed for many seasons to follow.

Hoping all our readers had and are continuing to have a Chag Kasher v’Sameach.

Visiting Guidelines

We appreciate everyone’s support and well wishes; it means a lot to us that so many of you want to spend time with Debbi. However, our visiting nurses have given us a set of guidelines regarding visitation and phone calls to ensure that Debbi gets sufficient rest and time to recover.

1. Please email Rea at  reamiriam@gmail.com to request a time to visit. As much as possible we will attempt to accommodate requests.

2. Please refrain from calling the house to avoid waking Debbi. In fact, we reserve the right to deactivate the phones altogether. Rest is crucial to her healing process. We will do our best to update the blog and share information. 

3. Debbi’s immune is severely compromised. Therefore, if there is any chance that you may be sick, please reschedule. In all cases, children under 15 years of age are asked to remain at home. 

 

Back in the Four-Poster

I am now safely out of the hospital and have been returned to my antique, four-poster bed in my bedroom here in Cape Cod. How lucky am I? When I arrived, there was a wheelchair waiting for me in my room, as well as a chair in the shower. I think they’re trying to hint that they’re slowing me down a little bit here. But I must admit I’m relieved to see that it’s true. The exhaustion increases daily; I’m having difficulty staying awake with the medications and all foods taste, to me, like metal.

We have a nurse who comes to visit once a day to IV any treatments that cannot be taken orally. So far, the care from the nurses has been impeccable. They’ve also been great with my kids, helping them understand what’s going on. Rea arrives at every mealtime with food that she has prepared, Aaron and Shira continually come up with ways to increase the height of my feet so that we can try to get some of this edema out of my ankles. Jan has gone back to NY. 

We had quite a houseful yesterday. My father, brother, sister-in-law and two neices drove eight hours from PA to the Cape–their first visit here, actually–to make sure that they got to see me. I think this journey has been very difficult on my brother, especially since we just lost our mother, and for my oldest niece who is eight years old. They left last night to be able to return to PA for Passover. My sister, Ellen, who as you have followed along the blog is extremely ill, was driven up for 25 hours in a car with her feet wrapped up on the dashboard so that she could spend some time with me. In her good heart, all she wants to do is take care of me, but she really needs to take care of herself. So this should be quite an issue. They are staying at a Bed and Breakfast around the corner.

I am barely awake, although I’m struggling in my heart to stay awake. There is very little energy to do anything. Going to the bathroom, eating a meal and taking medication is about the most I can pull off. Breathing gets more difficult each day, in my chest and in my back. I am praying for an improvement and hoping that some little miracle will cross our door to make this a little easier.

Morning Musings

The nurse taking Debbi’s vital signs woke me up. Debbi’s numbers looked reasonable for her and oxygenation reported at 95% must imply that her lungs are still operational, infusing the hemoglobin and removing the carbon dioxide from the heme proteins as well. Sitting alone in the hallway, I was curious to compare Debbi’s latest blood test with that from the early days of this terrifying journey. Remembering that I had posted a table with such statistics, I went back in Debbi’s Journey to April of 2008 and found what I was looking for in the entry for Thursday the 24th.

Debbi had just finished the second application of the chemotherapy drugs and we had landed in Sloan Kettering’s Urgent Care center for the first time. I was comparing Debbi’s current counts to the trending counts almost one year ago. From April 3rd to April 24th, we watched the hemoglobin drop from 12.4 to 9.9 and as I wrote yesterday, it now stands at about 9.0. Then my eye caught a category that has not been followed in quite some time. That same day I posted the results of the Noodge Index and commented that Debbi had been noodging me about a fold-out sleeping chair.

In this department, counts have stayed quite constant. Last night I made sure Debbi was tucked in with two pillows under her feet to aid in fluid removal, her top sheet and blankets arrayed properly, an extra blanket folded just so (maximizing its weight over a smaller area) placed from her knees upward with an extra 2 inches tucked under her chin, and of course kisses good night. I then began to arrange sheets, a blanket, and a pillow to make up my own sleeping chair. I knew what was about to happen. True to form, once I began, Debbi began noodging. The noodge meter started rising. Do it like this or move the chair like that. Once I was finally settled in, Debbi wanted to get up and tuck me in and provided a bit more noodging when I politely asked her to just stay where she was with all her bedding arrayed just so!! Now, just as then, it remains true… as long as it stays within the normal range, Debbi’s noodging is quite welcome!!

So, once I had clicked into an earlier section of the blog, I continued down memory lane by perusing more of the entries. We were filled with trepidation but also with much hope at the beginning of the journey. And now? Now we are often talking about hospice, and being comfortable, and final affairs. We look back and wonder about what might have been or what we could have done differently. What is advised one day is ill advised the next. My good friend Schenker Jack has a whole litany, which I love hearing over and over, about things that we were told were good for us years ago, which then became bad for us, and then became good for us again. Debbi was meticulous in getting periodic mamograms, pap smears, and colonoscopys. Who ever heard of getting scans for early detection of cancer in the renal pelvis?

Well, a quick google search shows that there are companies that now feature wellness scans. One such firm in New Jersey, Able Imaging and Wellness, http//www.ableimaging.com does offer such a scan. Reading their web site, it can be seen that this is a non-invasive scan that covers all the body’s major organs. Certainly this technology was not available years ago but now it is becoming more commonplace. Might such a scan have discovered Debbi’s Transitional Cell Cancer earlier? Seems likely but who knew?

Speaking of scans, one good piece of news. When comparing the chest X-ray taken yesterday with the chest X-ray taken this past Monday, no differences were reported. So thank goodness we are not seeing rapidly changing nodules multiplying out of sight.

We will hopefully hear of discharge plans after morning rounds because Debbi anxiously wants to get back to the Cape House, back to the comfort and security of her mahogany rice bed, and certainly she wants to see and interact with her grandson Yonah.