More Fun with Pulmonary Emboli and Hematomae

So everything with wound care was moving along until June 2006, with the foot wound healing, and me thinking about looking for a full-time job again. Then things started happening again: Five weeks after going off Lovenox, my mother caught a cold. I brought her things to try to help prevent a bad situation: a smoothie with an immune boost, throat drops, whatever I could throw at the thing . . .

Unfortunately, things played out in almost the same way as they did last August. I called my mother in the morning – again, on a Monday, but now, on June 12th – and she said she had a sharp pain in her back that made it painful and difficult for her to breathe. I told her I’d be down to take her to the Emergency Room, and she could barely make it to my car; she was very weak. At the ER, they found her oxygen saturation level (O2 sat) to be only 79; it should hover around 100. They got her into the ER straightaway, and I quickly followed.

With the history of the previous year’s Pulmonary Embolism, they watched the O2 sats, ran an EKG, and then confirmed the diagnosis with a CT angiogram. This time they found not one, but two PEs, and very large clots, as we were told. My mother was admitted to the CICU, and I watched for days as her O2 sats struggled to get into the 90 percentiles, and her resting heart rate hovered around 110 (tachycardia); she was very ill. She worked with Physical Therapy, who assessed that she be released to home care. There was no way that could be done, as we felt she was too weak, and needed to build up strength and build up her O2 sat level, in addition to the scariness of the tachycardia. We had to bite the bullet, and pay – out-of- pocket – for the care facility. And so it went ...

As my mother had large PEs, and she couldn’t have Coumadin (based on her reaction to it from the previous year), she was on 160 mg of Lovenox, 80 mg twice a day, which was injected just under the skin on her abdomen (pinch and push). On the 5th of July, she woke up at 3 AM to pain on her abdomen. She asked for an ice pack, and fell back to sleep with it. When she awoke again, the painful area had grown in size, and pain. The doctor came to see her, and confirmed her fears: another hematoma. He called the hospital, who told him to “keep an eye on it,” but the doctor replied back that the ER could expect a patient with a hematoma by ambulance. Meantime, I was blissfully unaware of this at an appointment with a doctor, telling him about the cryptic message my mother had left that morning, hoping it was about some good news.

Needless to say, when I arrived at the care facility to discover that my mother was at the hospital, I was extremely alarmed. I flew to the ER, asked where she was, and found her in in agonizing pain the ER's Gulag (one of its outermost rooms; ironic, as they were 'keeping an eye' on my mother's condition). She equated the pain with that of childbirth contractions, but possibly more painful. It was no surprise that she had to be on morphine to control the pain, even though she is the most stoic person I know. I evaluated her level of pain, determined if she needed more medication, and then quickly determined she’d need a Foley catheter in order to survive; movement was agony. I went out to the main station to request one, and then back again a couple of times when the actual need for the Foley became more urgent. I was frankly surprised that none of the medical staff had thought of immediately inserting the Foley in their assessment of the situation, considering my mother's condition.

I went outside to make a few phone calls to family and friends to inform them about what was going on, being that I couldn't do it inside the hospital. It was during that time, apparently, that one of the nurses removed the saline drip. This would be telling later on ...

After calling my brother, I came back in, and my mother became nauseous. Her whole body was wracked with paroxysms of nausea, worsened by the fact that she was lying down. I was greatly concerned in seeing this, as I was worried about how this would affect the spread of the hematoma. I called for the nurse for Phenergan, or something to quell the nausea. The nurse told us about it having side effects, and I replied, “Well, what could be worse than making the nausea go away?” He then stated that my mother was “on a lot of things,” which changed the tide of her morphine-and-pain-affected mind; she declined the medication, and I bit my tongue, and stopped arguing.

About 20 minutes later, my mother had another bout of nausea, with the same wracking spasms. She then said that she felt a ‘zip’ down in her right side. I asked her if it was like a nerve snapping, and she said maybe it was a blood vessel. At that point, I insisted she have the Phenergan. I called the nurse, told him we had a change of mind, and he brought it back to her. He gave her the injection, and then she said “I feel funny” as he walked away. It was then that her blood pressure dropped to 64/47. I called at him what was happening to her BP, and she took two puffs of breath, and then she was out.

The nurse quickly came back and lowered her head to try to get the BP to increase more quickly. He couldn’t get a good read on the automatic cuff, so he tried to get one with a manual cuff. Suddenly, a team of nurses and the doctor filled the room and were crowded around us, asking the nurse if he needed help. The doctor called out to have more fluid pushed through the line; I replied that my mother had been off the line all afternoon. The doctor looked at me in a shocked way, saying, “That’s not in my orders!” All I could do was look back at her and shrug, replying that one of the nurses removed it in the course of the afternoon. If she’d checked the line when she’d come on duty in the late afternoon, she’d have seen the line wasn’t in place.

Meanwhile, the surgeon for consult had shown up shortly after everyone else, and after he dealt with constant interruptions from his pager, came back in for an examination. The doctor showed him the hematoma, saying it hadn’t really changed since her last examination, so she couldn’t explain the crash. I pointed out that the hematoma had changed, in that it had grown down the right side, and I shared what my mother had said about the 'zip' feeling. The doctor then looked at it again, and said, “Oh, yeah, it has changed. That’s a lot more blood loss.”

Lions and tigers and bears, oh my! These are the medical professionals handling my mother’s walk along the precipice of death ...

So, the crew got more lines going, including the dormant one, started pumping in multiple liters of saline, and then asked me about running blood. I told them to do it. The crew then moved my mother from the Gulag to a room very near the hub of things: the ER equivalent of Park Place. As they did this, they asked about a medical directive, about how invasive to be in reviving her – should the situation arise – and all of the things they have to talk about when a patient is in a crash mode. We were able to get my mother to respond enough to concur with what I felt she wanted, which, ironically, ended up being the things that saved her life, including intubation. On her previous stay for the PEs, we'd turned down intubation. I'm glad we had the foresight this time to turn around on intubation.

In the "Park Place" of the ER, my mother had four liters of saline and a pint of blood going when the doctors determined they still needed to use a compression bandage on her abdomen in order to contain the bleed. In order to put the bandage on, they had to roll her from side to side. This awoke her, as the compression made it difficult for her to breathe, and the process of putting the bandage on was traumatic. She was very agitated, crying out that she couldn’t breathe, which could clearly be seen by the shallow breaths she was taking, and tanking her O2 sats. The team loosened the bandage as much as they could, but she was still agitated, and crying out, even asking to “let her go.” I found what she was saying deeply disturbing, to say the least, and pleaded that the staff give her a sedative, citing her agitation and falling O2 sats. A nurse finally gave her .5 mg of Ativan (a sedative), which knocked her out, and, lo ...  she finally resatted. Her BP was problematic, but it would have been regardless, due to the bleed.

Because the blood pressure was still a problem, and my mother was still teetering, the doctors decided to surgically install a central line to provide better access for the amount of fluid they needed to push. At that point, I was asked to leave the room ...  Little did they know that I’d seen a 10x7 inch eschar removed from her foot less than a year ago, and the subsequent debridement of necrotic tissue for many, many months afterward. At any rate, it was about 11:00 PM at that point; she wouldn’t make it to ICU till 12:30 AM, and I didn’t leave till I saw her in her room ...  That was 1:10 AM on July 6th.

I came home and wrote an e-mail to my brother, informing him of the change that had occurred since I had last spoken with him. I didn’t get to sleep until 4:30 AM. I awoke at 8:00, and then the phone rang. It was the hospital, telling me my mother was going in for an angiogram to find the bleed, and she might not live through it, so I might want to come down. I told the woman I’d be down straightaway, which had been my plan, anyway.

I’d called my brother and one of my aunts as I was driving to the hospital to let them know the absolute latest, and didn’t sugarcoat anything. I got to the hospital just as the crew was wheeling my mother towards the elevator for the procedure. I was able to hold her hand, squeeze it, give her a kiss, and tell her I love her. She was intubated, and still pretty out of it. I had to take a separate elevator, so I ran down the stairs, and met the crew downstairs. I walked with them to the outside of CT, where they’d perform the angio. And then I waited ...

As soon as the surgeon came out to greet me, he let me know that only one bleed was found: a small arterial bleed. The surgeon had embolized the bleed, stopping it; he felt there was a fair prognosis, and my mother was stable. I called everyone to let them know. I waited until she was taken back upstairs, and then went to the my mother's house to inform her neighbors. I also returned to the care facility – after having called to let them know she’d be in the hospital for a while – and retrieved my mother’s belongings.

And so my mother was in ICU ...  My brother and sister-in-law drove to town to visit, arriving very late in the evening, and were told by the night nurse in the ICU that the X-rays showed that my mother’s PEs were gone. Whuh? When my brother told me this the next day, I told him this was impossible. First, my mother hadn’t been on Lovenox for a long enough time to treat the PEs. Second, an X-ray in not the determinative test for a PE; the CT angio is. I have no idea why the nurse would say something like this, because it’s just not ‘informed’ information, and he’s a fully-trained and educated medical professional, unlike me. Through experience, I just happen to know better.

At any rate, within a few days, my mother graduated from intubation in the ICU to extubation and the CICU, which was a huge step, and a clean escape from that questionable nurse. Knowing she had expressed a desire — via her writings when she was intubated in the ICU — for frozen fruit bars, I took care to bring some with me as soon as I knew she had been extubated. Her expressions as she ate it were priceless; it was the first item of flavor she’d had in almost a week, and it was very soothing to her throat.

Happily, within a day, she was allowed a solid diet, which was a jump up from broths, puddings and applesauce. Soon after that, my mother was sent to the next care ward down from CICU, being that she didn’t need the high level of monitoring in CICU. There were still problems, however.

In my discussions with her doctors, I expressed my concern regarding her tachycardia (high heart rate), which, of course, worsened with any ambulation. They shared my concerns, and kept her hospitalized a number of days longer than they might otherwise done due to this state, and the fact that she had a massive abdominal hematoma that would take months to reabsorb. We finally concluded that nothing more could really be accomplished at the hospital, so back she went to the care facility, where she was greeted with open arms.

Much to our surprise, although it really shouldn’t have been, the doctor at the care facility informed us of something not shared at the hospital; a further diagnosis of congestive heart failure. I explained to him what had happened in the ER (after which he asked me if I was in the medical profession, which all of my mother’s doctors had done), and he told us that 25 liters of saline had been pushed, and didn’t even mention the amount of blood. Considering all of that, and what I witnessed after the fact in the amount of fluid retention, etc., the CHF wasn’t a mystery. When the weigh-in came, and 40 pounds of extra weight was there that hadn’t been before, we knew what we were dealing with.

And so, I went to the Web. I found medical information regarding the use of nutritional supplements in helping battle CHF. I printed out the information, bookmarked the page, and brought the printouts and my laptop into the facility the next day. My mother and I showed the information to the doctor, and he had no qualms about adding the supplements to a regimen that would include, of course, Lasix, to remove the retained fluid.

With that, I was off to the Whole Foods to go on a supplement shopping spree. My mother started off slowly, and gradually ramped up the doses of the supplements until she came up to the recommended numbers. While we know the Lasix helped melt away the water weight, we really feel the supplements helped her regain her strength.
We soon had to face the fact that — given her need for a high amount of oxygen (4 liters) — my mother really wouldn’t be able to go to her own home and care for herself. With that in mind, I prepared my two bedroom condo to accommodate her and her needs, and she’s been here since her release from the care facility. She’s doing quite well, but other things have got in the way of her returning home.

While she was in the care facility, I talked her into having me re-do her master bedroom, which hadn’t been touched since my father died in 2000, and hadn’t had any paint or carpeting changes since the family moved there in 1971. I brought paint swatches in for her to choose from, and prepped, primed, and painted. I then removed the old carpet, and installed carpet tiles. Once having done that, I looked at the dingy master bathroom, and discussed a re-do of that with her. I’ve been working on that — on and off — for the last few months. The things that have been roadblocks are trying to save the mosaic tile to reuse in the other bathroom, and injuring my rotator cuff in trying to carefully coax the tile from the wall in order to reuse it. I have since graduated to taking my Sawzall to the grout lines in order to remove the tile in approximately 8”x8” squares, but Sawzall blades and tile/grout don’t get along too well.

All in all, we’ve come a long way, considering my mother was crashing in the ER last July. I don’t know that I’ve become argumentative in dealing with medical professionals, but I am certainly more sure than ever to ask questions, especially when I see something I don’t feel is quite what it ought to be. My hope is that anyone and everyone can, and will, feel empowered to ask those questions.  Oh, and if a medical professional tells you to "go home and keep an eye on" anything, empower yourself and ask for a second opinion!