Back in the Hospital

Robert is on Day Three in the hospital.  We got here by way of the Emergency Room but it really has just been a matter of time before he had to come in.  After all, Robert was hospitalized three times last year for pneumonia and sepsis and had bronchitis four times this year but without any hospitalizations.

The way things have been going he really was due for a hospital visit.

He isn’t here for pneumonia (although he has a bad cough and is starting to run a fever).  We brought him in because he can’t walk. 

That’s unusual for him. 

Robert has had a steady decline in his health since I took over his care in 2009.  I mean, that’s one reason I took over his care: he was declining.  Falling more frequently, not making safe decisions, not recognizing when he had a raging infection – even allowing a homeless woman to live with him and his companion. 

Yeah, he was declining. 

Since I’ve taken over his care, he has needed to use a walker at all times, has recurring pneumonia, needs to be cleaned after using the restroom, has urinary incontinence and sometimes bowel incontinence. He has a swallow disorder so is on a modified diet, has constant congestion and a cough, has increased his seizures and is on a new anti-seizure medication which (it pains me to say this) has reduced his seizures. (It pains me to say that only because I’ve blamed his rapid decline this year on these new medications.)

More decline.

This year I have needed to help him get out of bed, use a shower chair so he didn’t fall and help him put on socks when dressing. He slept until noon on the weekends.

The decline really seemed to be speeding up.

Three weeks ago, he had increased difficulty moving his legs. I put him in a wheelchair for Day Program. A few days later, we had to start using it at home too.  Richard and I helped him transfer from the wheelchair to the toilet or shower chair or recliner or dinner table chair. Robert slept until noon on the weekends but also needed to stay home from Day Program a couple of days a week to sleep in.

Each day after that, more help was needed until he could not move his legs – particularly his right leg.  I could see him thinking: Leg – MOVE! But it wasn’t listening.  It stayed firmly planted wherever he put it.  Transferring him became a real struggle. He slept until 3:00 in the afternoon and ate half of what he used to.

Now that’s a real problem!

His neurologist settled on a new diagnosis: Cervical Disc Disease with Myelopathy.

That doesn’t sound good!

Labs were run and an MRI was scheduled to confirm this new theory.  Unfortunately, Robert had a great deal of back pain while lying down for the test and couldn’t stay still.

An MRI with sedation was ordered but not yet scheduled and neurology cautioned we should go to the ER if he continued to decline. 

Robert slept all day at Day Program on Monday, even falling asleep in mid-sentence and during lunch.  I mean, he didn’t even eat his pudding!

By Monday night, he could not move from the wheelchair to the bed without Richard and me lifting him.

Okay, things are declining faster than I can even keep up. 

I let Robert sleep in on Tuesday but debated about taking him in to the ER.  I called neurology who agreed he should be taken to the hospital.  They thought he could get a CT scan of his neck done and then the MRI with sedation if needed.  It was Tuesday afternoon so I thought it would be a great time to take him to the ER. I got him cleaned up since he hadn’t been out of bed since the previous night and called the paramedics.  There was no way Richard or I could get him in or out of the car so the ambulance was the best solution.

Robert was agreeable about going to the hospital and our local fire department greeted us like old friends since we hadn’t seen them since last December. It is really nice when people remember us and I love our fire department but I really wish we didn’t have to have them on speed dial.

Can’t we just know them because we brought them cookies when the kids were little?   

Robert was loaded into the ambulance and was whisked off to the hospital.  I gathered my essentials (phone charger, note pad, logs for seizures and vitals and other symptoms) and kissed Richard and the dogs goodbye.  Richard planned to meet us in the ER later in the day. 

My optimism about a quick and quiet visit to the ER was squelched before I even made it to the emergency department check-in desk. Visitors and patients waiting to be seen were overflowing into the hallway and parking lot. I gave the front desk Robert’s name and was given a visitor pass with his room number on it. 

Which was a hallway. 

Robert was on a gurney hooked up to an EKG machine. The other patient in this hallway asked a passing nurse for crackers and juice. Goodness – how long has he been here? I wonder if a change of address form is going to become necessary.

We were in for a long afternoon. 

Next post: Passing Time in the ER

What More Can I Do?

Robert has battled bronchitis three times since January. He was hospitalized three times last year for pneumonia. He has such constant congestion that even the Costco packages of tissues aren’t enough to last very long. When the congestion gets terrible and it turns into bronchitis or pneumonia, we resort to antibiotics.

Taz likes to help -
whether Robert likes it or not! 

I am trying to keep it under control so we don’t have to use them – goodness knows, he is already resistant to many of them and I don’t need to speed his resistance to the rest of them.

It is a balancing act but once he starts with a fever, continued congestion, slowness and drowsiness I know what is coming.  What I am trying to avoid (aside from over-use of antibiotics) is the bronchitis turning into pneumonia resulting in a hospital stay.

Call me self-serving but it’s a pain when Robert is in the hospital. He rapidly declines, not only from the pneumonia but from the actual stay in the hospital. It takes weeks – sometimes months – to get him back to baseline.  Sometimes there’s even a permanent shift in his skill level, balance and independence. 

Lying in bed for long periods of time make his legs weak and while the physical therapy usually prescribed helps, it feels like we are starting from scratch over and over and over. 

The antibiotics themselves wreak havoc on his digestive system which means he has bowel incontinence for months after a hospital stay.  We load him up on probiotic juices and yogurts but after all those strong antibiotics it is just a matter of time before he is able to have some control again.

Yeah, so call me selfish but I am not at all keen on letting his congestion turn into pneumonia.

Over the last several weeks we have been managing a new medication so it has been difficult to tell if some of the things going on with Robert are a result of the medication or if something worse is working on him. 

For weeks his congestion has been so awful at night that he throws up from it.  After the first accident I realized having a bowl bedside could help with the 2:00 a.m. clean-ups.  Sure, he still calls me after throwing up but there’s a much smaller mess to clean up.

I wrote to Robert’s primary doctor asking how else we could manage his congestion. The congestion just sits in his chest and it is impossible for him to cough on demand.  I explained to the doctor what we are doing so far:

Increasing his liquids to thin out the mucus;

Using a neti-pot to drain his sinuses;

Giving him Coricidan (a decongestant approved by his neurologist);

Daily doses of Musinex and AllegraD;

Nasal spray;

Wedges to prop up his head and for his feet; (he practically sleeps like a pretzel!);

Daily vitals check; (watching for a high pulse and low blood ox and low blood pressure);

Checking the color of the mucus when he does cough up stuff; (Not a fun job but I am very happy when I don’t see any yellow or green in his throw-up/spit up bowl. Although, imagine my initial panic when I saw brown but then remembered the Thin Mints I let him have an hour earlier.);

I even started giving him salsa and chips for a snack so it would make his nose run!

Richard and I also changed Robert’s bedtime routine so he is in bed earlier and, hopefully, sleeping more.

His doctor replied recommending we use a humidifier and an air purifier.  We use the humidifier; I just forgot to mention it.  As for the air purifier – I knew I recognized that thing in the corner gathering dust.  I completely forgot we had it and for some reason stopped using it.

Okay, it’s back on.

Congestion is the same.

Day Program had reported Robert having issues walking and with balance but I chalked it up to the new medication. 

I sent a similar message to his pulmonary doctor only by this time, his pulse was slightly elevated and his blood pressure was a little on the low side. 

What more can I do to manage his congestion?

Before getting a reply, it was the middle of the night Friday and Robert woke up at 2:00 a.m.  Taz and I went downstairs (Taz always goes with me when Robert wakes up in the middle of the night).  Robert thought he had to go to the bathroom.  I got him to the bathroom before realizing he felt warm but a fever didn’t register on the thermometer. 

I cleaned him up and gave him two Tylenol anyway.

By morning, Robert was extremely sleepy but that wasn’t too unusual for a Saturday. I let him sleep but took his vitals. Still no fever but when I lifted his arm to put on the blood pressure cuff, I noticed his back was soaked from sweat. He was more than just sleepy – he was having difficulty keeping his eyes open.

The report from Day Program about him having trouble walking was looking more and more like the onset of his bronchitis/pneumonia.

Oh crap.

I gave him two more Tylenol, finished with the vitals and called the after-hours number for the primary doctor.  I was not going to the hospital if I could help it!

The PCP was very nice but she was being overly cautious and wouldn’t prescribe antibiotics without him being seen.  She advised me to take him to the ER.

Ugh.  I don’t want to hurt your feelings but I think I am going to call his pulmonary doctor to see what he says.  She audibly sighed which sounded to me like relief. Yes, good idea. Call the pulmonary doctor, she said.

So I did.

I explained to the pulmonary doctor on call what was going on; Robert’s history of pneumonia and bronchitis and hospitalizations. I gave her a run-down of his vitals.

She prescribed antibiotics.

She told me if his blood pressure got below 80 or 90 (the systolic number), to take him to the hospital. 

I started him on the Z-Pak (a very strong, five day dose of antibiotics). Robert slept all day long and I only woke him to check his meds every hour and to give him his medications.

I told Richard I wished had an IV pole to hang a bag of antibiotics.

Robert’s blood pressure went down to 93/65 – oh boy, that was close. I think I willed his blood pressure to rise right about then.

At 5:00 p.m., I made him get up to go to the bathroom so I could check his sheets and change him if needed. At first he thought it was New Year’s.  Then asked if it was Christmas.

Nope, just Saturday.  He didn’t seem too disappointed.

He also thought it was morning but I let that go. It probably didn’t help that I gave him scrambled eggs and hash browns for something to eat. 

Thankfully, the antibiotics did the trick. He still had a nasty cough but seemed more alert and his vitals were getting better. He has slept through the night the last few nights but his vitals were starting to creep toward the “getting sick” side again today. 

My fingers are crossed but they are ready to dial the pulmonary doctor again for advice or 911 if a hospital visit and stronger antibiotics are needed. 

I wonder how quickly I can learn how to work an IV?

Grateful for Great Care

Some people review restaurants, movies, cruises or even shopping experiences.

Me, I think I could make a career out of reviewing hospitals.

 

Robert on the mend in the MICU

Robert has been hospitalized three times over the last year and a half – all at the UC Davis Medical Center.  (He has also been to the emergency room of another hospital for a couple of falls when he lived at New Home but those were not overnight stays.)

I have come to expect great care from the UC Davis Med Center and I couldn’t be more grateful. 

When I changed Robert’s primary care physician from the New Home “doctor” (yes, I used quotes) to a UCD Health System physician, I didn’t know what to expect.  I was concerned because Robert is not a private pay patient – he is on MediCal and Medicare so I wondered what type of care he would get. (A stereotype I had in my head that I am not proud of.)

When we first visited this doctor, though, I thought I had hit the jackpot. She was kind; she listened to me about Robert and even wrote down the name of an online shoe store that she loves.

Now that’s my kind of doctor.

When she went on leave and Robert had to see other physicians, I never expected to get that same level of care. Again – wrong! Robert has seen two other doctors and both have been thorough and caring (although no one else has given me tips on where to get great shoes).

One of them even explained that she had read Robert’s records before our appointment but wanted to read them in more detail after meeting with us and politely asked if we could wait.

Um, you read his records and you want to read more?  Oh yes, we’ll wait. We will be happy to wait.

As a comparison, for years I felt like I was meeting my own physician for the first time each time I had an appointment. (My doctor is through a different medical group.)

There are many reasons I am grateful to the UC Davis Medical Center and I want to share what they are doing right!

Robert’s first bout of pneumonia and sepsis landed him in the UCDMC for a week.  He was in a regular room and the nurses were all terrific. My husband or I stayed with Robert during the day and through the shift changes to be sure there was a smooth transfer of care but it always went seamlessly. 

Round two of pneumonia and sepsis happened last April and, while I was still grateful for the good care he received, there were hiccups. An ER nurse didn’t even look at me while I talked to him (much less listened to me) and actually gave Robert a duplicate of a seizure medication I had already given him at home an hour before. (He was a better listener after that incident but I was/am still bitter about it.) 

During that stay, once Robert was out of the MICU, he was moved from room to room on a daily basis until he was discharged.  I never could connect with his doctor until I had the nurse call the doctor and I talked with her on the phone.  Even she didn’t listen to my concerns! Note to medical professionals:  LISTEN TO THE CAREGIVER!  (Phew – just had to get that out.)

Robert’s most recent hospitalization was a dream come true (well, except for that whole pneumonia and sepsis business). 

The personnel in the emergency room (nurses, doctors, x-ray tech) were fantastic. They asked questions. They were concerned and caring. They were respectful of Robert and me and my husband.

They listened.

They actually made me feel as if I was a member of the team caring for Robert. Which is awesome because I am. 

The decision was made to transfer Robert to a regular room which seemed reasonable to me based on his vitals.  The nurse caring for him on the regular floor kept a close eye on him and very quickly realized he was going downhill.  She notified the right people and we had a rapid response doctor looking at Robert and then calling the MICU team for evaluation.

It was obvious the systems in place for quality patient care were working properly. There are protocols in place which were followed to the letter as far as I could tell.

Robert was transferred to the MICU in short order where the great care continued.  The team of doctors who visited Robert actually talked with me each day and asked questions as well as explained what was going on.  (By contrast, the team in April discussed each patient outside the patient room and I had to try to eavesdrop to get any real information.)

Robert was moved back to a regular room once he was stable enough. He stayed in the same room for several more days which I think is a very important part of his recovery.  He had fantastic care from the nurses and I was able to talk to the doctors who had been involved in his care from the beginning when he was admitted to the emergency room. 

One of the most important aspects of Robert’s care at the hospital, and one for which I am extremely grateful, was the willingness to adhere to his medication schedule.  I get it – it’s not easy since Robert has seven times throughout the day he is getting medication.  One of the first things I do when Robert is hospitalized is hand out a copy of a one page contact and medication schedule – to the ER personnel, to the nurses once he is in the MICU then again to the nurses once he is in a regular room. Everything you need to know about Robert is listed on this sheet of paper (except the fact that he loves Family Feud and Jeopardy). 

When he was hospitalized in April, Robert was not kept on his regular medication schedule no matter how many people I gave the med list to or how often I went through it with then nurses. The nurses actually told me they weren’t able to adhere to his regular schedule. I wondered how we could evaluate his progress if his medication schedule was not kept the same (I don’t even think they gave him all of the medications he was supposed to have). If he doesn’t get better or develops a new problem how can we determine if it’s the bacteria or a new problem or because his medications were changed?

I was concerned the same thing would happen this time so asked one nurse if she needed me to go over his medication schedule. While I was offering to give her the medication list and schedule, she produced a copy of it and asked if it was what I was about to give her. The nurse who had been with Robert before her had given her a copy.

She acted like it was the most natural thing in the world to listen to the caregiver.

Oh my god. I almost hugged her. (Instead, I thanked her profusely.)

Robert eventually improved and was discharged after the doctor and I talked at length. I was also contacted by the discharge coordinator and told Robert qualified to get physical therapy at home. In the three times he was hospitalized, this was the first I had heard of this and was thrilled when she told me it might take a few days to set up but that he could have it at home. Fantastic! Sign us up.

Robert has beat pneumonia and sepsis not once, not twice but three times.  I am well aware this is nothing short of a miracle considering sepsis is the leading cause of deaths in US hospitals. 

Robert may have been given a miracle (or three) but I know that much of that miracle is due to the outstanding care he received at the UC Davis Medical Center, especially during this most recent visit. 

To the doctors, nurses, physical, speech and respiratory therapists and staff as well as administrators (for developing and implementing those helpful protocols):

Thank you from the bottom of my heart. 

And, to share Robert’s words (words he repeated to every single doctor, nurse, technician, therapist and custodian who came into contact with him whenever they left the room):

“Goodbye and God Bless You.”  

Sepsis: What to Know

In the last 15 months, Robert has had pneumonia and sepsis three times.  He was hospitalized in May 2012, April 2013 and just recently, September 2013.  In Robert’s case, these seem to not only go hand in hand but come on quickly with little to zero warning.

During Robert’s bout with pneumonia and sepsis this past April, he actually went into Septic Shock.  His blood pressure dropped so low the medical personnel in the Emergency Room had to start a central line (an IV in the neck) and give Robert Norepinephrine which treats low blood pressure but needs a big vein to go into.

Sepsis scares the heck out of me since it is so serious and seems to come on so quickly.  Fortunately, we live in an area where the teaching hospital Robert goes to for his medical care has made “reducing deaths from severe sepsis and septic shock an institutional priority.” 

In April, we were asked if Robert would participate in a research study aimed at protocols of care for early septic shock. Robert has volunteered to be in numerous research studies over the years for various epilepsy drug and medical devices so I knew he would want to participate in this study. He was not able to consent but since I have Durable Power of Attorney for him, I consented on his behalf.

Once Robert was alert enough, I told him he was in a study to help other people with septic shock.  He was happy to help.

Because Robert seems to be susceptible to pneumonia and sepsis, I have researched both and been given information by the hospital.

I also learned that September 13 was World Sepsis Day and September is Sepsis Awareness Month (who knew?).

As caregivers, the more we know about sepsis, the better prepared we can be in order to advocate for our loved one with a diagnosis of sepsis. (The following information was gathered from several sources.)

What is sepsis?

1.     A reaction to an infection throughout the bloodstream.

2.     Sepsis does not occur by itself; it is a reaction to an infection (such as pneumonia, urinary tract infection or even Appendicitis);

3.     Bacterial infection is the most common cause but sepsis can be caused by a viral or fungal infection as well;

A few facts about sepsis:

1.     Sepsis is the leading cause of death in U.S. hospitals;

2.     750,000 Americans per year will get sepsis;

3.     Between 28 and 50 percent of people with severe sepsis will die (more than U.S. deaths from prostate cancer, breast cancer and AIDS combined);

What are the symptoms of sepsis? (Be aware that while many symptoms can be the same in both children and adults, there can be differences)

Symptoms in Children:

1.     Fever or low body temperature;

2.     Chills;

3.     Fast heart rate;

4.     Breathing changes;

5.     Skin rash;

6.     Less urine output;

7.     Confusion, lethargy;

8.     Nausea, vomiting;

9.     Shaking;

10. Warm skin;

Symptoms in Adults:

1.     Fever or low body temperature;   

2.     Chills;

3.     Fast heart rate;

4.     Rapid breathing;

5.     Skin rash;

6.     Less urine output;

7.     Confusion or light-headedness;

8.     Cool, clammy skin or red flushed skin;

I have found with Robert he develops a skin rash, is confused and usually too weak to stand on his own, has a fever, high pulse rate and low blood pressure. This last time in the hospital he also developed severe shakes which was quite unnerving to see.

Unfortunately, many of these symptoms are symptoms of less severe conditions so it can be difficult to tell if this actually indicates sepsis. It is best to contact the doctor when these symptoms occur or go straight to the emergency room to be on the safe side. 

Treatment of sepsis:

1.     It’s important to start treatment for the infection as soon as possible before the sepsis becomes so bad that it causes organ failure.

2.     Often, the treatment will be in the Intensive Care Unit with a broad spectrum of antibiotics to treat the underlying infection;

3.     IV fluids as well as oxygen is also often used in treatment of sepsis;

Because Robert has had pneumonia and sepsis several times, Richard and I know how this develops in him. Robert gets congested, he develops a cough and runs a fever. By this point, I have taken him to the doctor and he is put on antibiotics. His symptoms clear up but then strike again and in lightning speed his blood pressure drops, he runs another fever and he becomes weak and confused.

Because pneumonia is the culprit each time, his doctor is trying to figure out the cause. Robert has undergone testing and sees a lung specialist next month.  In the meantime, we are on the lookout for lingering pneumonia and its unwelcome companion, sepsis. 

I realize this information about sepsis may seem scary but the more information we have as caregivers, the better advocates we can be for our loved one.

Please share your experience with sepsis in the comment section.

Dos and Don’ts for Medical Professionals: A Caregiver Perspective

I am very grateful for the care Robert received in the hospital last week but, unfortunately, there were varying degrees of attentiveness and competency.  Much of his treatment and care was wonderful and appreciated but there were a few instances that left me scratching my head (or addressing the problem immediately).

 

Robert doing his Physical Therapy

I don’t dispute the stress doctors and nurses must be under with their long shifts, the hospital bursting at the seams with patients and the high ratio of patients to nurses and doctors but do believe there are a few things that could improve.  Admittedly, these suggestions and experiences are based on one week-long visit in one hospital but I suspect these could be universal.

DO:

1.     Acknowledge the caregiver.  The most welcome question I received all week was, “Are you his caregiver?” Yes!  Yes, I am! Thank you for asking!  I’m sure my face lit up when asked this question because it indicated to me this was someone who knew the importance of the caregiver and the vast amount of information I may have about Robert’s history and his “baseline” behavior and health.  Unfortunately, the nurse who asked this only cared for Robert toward the end of his stay.

2.     Keep the medication schedule the same.  This is a tough one because I know it creates extra work for the nurses but I think it is critical in patient care.  Many of Robert’s meds are written as “3x day” but he is on a very specific regimen for various reasons such as certain drugs shouldn’t be taken with other drugs and some meds need to be taken with meals and some thirty minutes before a meal (another reason my checklist comes in handy!).  We have a very specific schedule we follow at home and if the goal is to get the patient well and to solve whatever medical mystery they currently have, why not keep as many variables the same as possible?  Robert was extra lethargic during his hospital stay – was this because of the pneumonia, his lack of activity or the medication schedule being changed?  The change for Robert wasn’t even consistent because he got moved around a lot.  It all depended what floor he was on and what the nurses were willing to do.   

3.     Communicate with the family.  During Robert’s hospital stay last May, I was familiar with each member of his medical team (Robert goes to a teaching hospital so there are a group of doctors who see the patients).  The doctors were communicative and available and answered every one of my questions.  This time, perhaps it was because Robert started in the ICU or because he was frequently moved to new rooms, but it was next to impossible to talk to his doctor.  In the ICU, I learned to eavesdrop on the team who would discuss his case in the hallway outside his room.  The doctors were all terrific but they rarely came into the room or gave me time to ask questions about what was going on.  Once he was moved to a regular room, I actually had to have the nurse ask the doctor to call me since I never saw her.  Aside from one day when I had to see the dentist, I was always at the hospital before 7:00 a.m. The rounds were supposed to be between 7:00 – 9:00 a.m. but I only saw the doctor once and that was on the day she released Robert.  Any information I did get was from asking the nurses or when I insisted on a phone call from the doctor. There may not have been anything new to tell me but I don’t know that if someone doesn’t tell me!

DON'T:

1.       Make assumptions.  As much as computers are helpful in having the patient’s medical history available as well as what treatments and medications have been given, mistakes still happen.  Twice I had to stop a nurse from giving Robert medication because he had already taken it.  Once, the ER nurse was ignoring what I was trying to tell him and he gave Robert an extra dose of Depakote (and then tried to blame me).  Another time a floor nurse was covering for the regular nurse who had left for break and she tried to give Robert the same medication he had been given an hour earlier.

2.      Play musical beds.  Robert was first in the ER on Friday and was transferred within hours to the MICU.  By Monday, he was moved to the telemetry floor (where they still continuously monitor vitals).  He was moved twice more before being released.  I was told numerous times the reason for the constant moving of patients is because the hospital was packed.  If the ER was full, they had to make room for those being admitted.  Patients were wheeled from room to room on a daily basis.  The downside to all this moving is the nurses do not get to know their patients which can hinder their ability to see a subtle change in health. 

3.       Say, “As I’ve already told you.”  Really?  Maybe I’m repeating the question because you didn’t answer me the first time or I didn’t think you understood my question so I rephrased it or gave you additional information.  I heard this from the difficult ER nurse and from the doctor assigned to Robert.  It’s arrogant and dismissive – please stop saying it.

While I try to be a helpful and grateful caregiver working on behalf of Team Robert, I would appreciate it if the doctors, nurses and hospital remembered we are on the same team.  After all, we have the same goal: a healthy patient and to be able to go home. For the most part, the care Robert received was, as he says, "excellent."  There were many, many caring nurses and other staff which was most appreciated during this stressful time.  These suggestions are meant to be just a little fine-tuning! 

What are your dos and don’ts for medical professionals? 

Counting My Blessings

A week ago Friday, Robert woke up with a temperature of 102, difficulty breathing and unable to sit up without assistance.  EMTs were called, Robert was taken to the emergency room and diagnosed with septic shock and pneumonia.

Robert is happy to be home from the hospital

The night before, he was slightly congested and had a temperature of 99 (which the hospital wouldn’t even classify as a fever) but, other than knowing how infections take hold of him quickly, there really was no indication he would be as bad off as he was.

It came on that suddenly – much like last May when he was also hospitalized with pneumonia and sepsis.  This time, he landed in the ICU, his fever spiked to 104 on night two and we were told he was “pretty sick.” 

After only one week, Robert was released and came home to enjoy both a Double Chocolate Chip Frappuccino from Starbucks as well as a scoop of Rocky Road Ice Cream after dinner.  (I know it isn’t the healthiest way to celebrate his homecoming but, hey, it makes him happy).

It was a long week of running between the hospital, work and home but there were lots of opportunities to be grateful.  

1.      I am grateful Robert now lives with us full-time.  This recent illness progressed from mild to severe so quickly, I don’t know if New Home would have been able to get Robert to the hospital timely. Because of their location, even if they did send him to the hospital, it would not be the one his GP and neurologist are affiliated with.  Having access to as much medical information about the patient as possible is extremely important, especially during a crisis like this.

2.   I am grateful for the emergency medical personnel! The fire department and EMT response to our 911 call was fast and efficient.  These guys are awesome!

3.    I am grateful for the flexibility given to me at work and for my employer providing paid sick days.  I was able to go into the office for a few hours each day then do some work at the hospital as well as handle questions or problems via email or phone.  It was a relief to know I have this flexibility, that I have supportive and caring partners (who frequently asked how Robert was doing) as well as not having to worry about not being paid for missing work. Not all working caregivers have such a luxury.

4.       I am grateful for my animals! It was a welcome stress reliever to come home at night and have two labs and my cat snuggle up with me at night.  They don’t leave me or my husband a lot of room on the bed but you can’t have everything!

5.       I am grateful Robert is such a good patient! He is polite and tells all the nurses, “God Bless You” when they leave the room.  (Last year in the hospital, all the nurses thought he was saying, “I’ll miss you.”).  Either way, they think he’s a sweetheart.  Just don’t interrupt him when he’s in the middle of finding a word in his word search book . . .

6.      I am so, so grateful for my family.  Other Brother and Oldest Daughter visited Robert (and me) which perked us both up.  My darling mother-in-law has a special bond with Robert and as soon as he made it to a regular room, she visited – with a gift and a card in hand.  Robert grinned from ear to ear with each new visitor. (It's amazing how helpful visits are in the healing process.)

7.       I am grateful for the caregiving community of caregiving.com.  What a supportive group!  I had people emailing and texting me during Robert’s hospitalization, many of whom were participating in the WAIT Buddy program (anyone can sign up and it’s free!).   

8.      I am grateful for my husband.  Richard was calm throughout Robert’s ordeal and was more than willing to be at the hospital while I was at work (a necessity since Robert wouldn’t be able to tell me if the doctor had come in or what they said).  Richard continued to work his own job (which, thankfully, is phone-based so he could take calls at the hospital) and he took care of the animals since I left very early in the morning and didn’t get home until much later than normal.  He made Robert laugh during every visit and he even put up with me when the stress and my weariness made me a little cranky (just a little).

9.       I am grateful to have Robert home from the hospital.  He still has terrible chest congestion but his vitals are good. At least he’s home and moving around which should help him continue to improve (home is a much better place to recuperate – hospitals are full of sick people!).  We’re keeping a close eye on him and continuing to check his vitals (yeah, just call me Nurse Trish) but he seems to be getting back to his old self.  He and Taz have to remember how to get along with each other (Taz is still in the “I want to be right in your face checking out everything you’re doing” phase and Robert is in the “leave my food and chocolate shakes alone” phase).  I'm sure they'll work it out. 

It’s been a while since I have shared what I am grateful for and Robert’s recent hospitalization gave me a wonderful opportunity to be reminded of what is important.

What are you grateful for today?