Tips for Surviving a Hospital Stay

June 29, 2010

Lauren hasn’t been in the hospital in about ten years. Her needs have changed since then and hospitals have changed as well. The once taboo cell phone can now be a lifeline to family and friends with all the numbers already at your fingertips. The hospital we were just in has wireless. If you have a laptop you can work, email, search for information and resources, or just amuse yourself while you’re spending endless bedside hours. And, in this new age of “hospitalists”, your primary care physician will not be seeing you. You will be seen daily, and sometimes more often than that, by hospitalists, who practice solely in the hospital setting.

I’m sure parents whose children have frequent hospital stays could write this much better than I could. But for those of you for whom hospital stays with your child are the exception rather than the rule, I thought I would share some thoughts and ideas that might make a hospital stay with your loved one with a developmental disability a bit more survivable:
  • If at all appropriate, ask that your child be put in pediatrics regardless of their age. You are more likely to be able to get a single patient room and the nursing is more appropriate for an individual that ordinarily requires more physical or specialized care than a typical person. They will have videos and games with which to entertain your child and there are other perks such as visits by animals and musicians. (We spent some time with a walking harpist. She mentioned that some people want her to stay away from them and consider her a bad omen. I guess she reminds them of harp-playing angels. Interesting.) 
  • You may want to request that the admitting doctor include in his orders that your child can take their own medication. There are two reasons for this. One, it may not seem possible, but the hospital pharmacy may not have the particular medication or form of medication that your child needs. Two, you will want to maintain the schedule that your child usually follows in taking medication and that may not be the hospital’s schedule. Bring their medication in the original bottles or packaging and make sure that the nursing staff is aware that your child will be taking medication brought from home.
  • Some other things to bring: Diapers – if your child uses incontinence products bring some with you. You don’t want to deal with the too big, too small, etc., etc., that the hospital will provide. Bring food – if your child likes to eat particular things, especially snacks, bring some with you. If they’re not feeling well they will be more likely to eat something familiar to them. (In pediatrics, they usually have a refrigerator where you can store labeled and dated items) If they like to use specific cups, cutlery, need a bib, etc. bring those as well.
  • More about food – You’ll be given a menu on which to circle food choices for your child’s meals. Order more than your child wants. Only about half of what I ordered for Lauren was provided as I ordered it (pureed vegetable rather than whole, regular pudding rather than sugar-free pudding, and so on). If you’ve ordered more, you’ll have a better chance of having enough that your child will eat. If the wrong type or form of food becomes a problem, ask to speak with the dietitian yourself and you will probably find it very helpful.
  • Consider taking a proactive step in case your child is ever admitted without warning. Write a basic history of your child’s health – diagnosis, hospitalizations, major illnesses, an explanation of their disorder if it’s a rare one, seizure history, major tests and their results, and anything you think would help medical personnel treat your child who they have never seen before. Make several copies of this and keep them in an accessible spot in case you need to run in a hurry. Include with the copies a blank piece of paper. When you can (I wrote mine in the car on the way to the hospital) write out the precipitating events and details that resulted in this current trip to the hospital. You will be repeating this information many times. If it’s written down, all medical personnel will have the same information and you won’t be kicking yourself for forgetting to tell someone some important point, because you were upset and not thinking as clearly as usual.
In addition, you'll need to take care of yourself. I know, easier said than done, but here are few hints that may help.
  • Create a stash of food for yourself – granola bars, your favorite tea, cans of soup, crackers, fruit. I left Lauren alone for all of about ninety seconds once and she pulled out her IV. So, I couldn’t run down to the coffee shop or anywhere else to get food. You may not feel like eating but you have to. I could, however, get the nurse to stay with her for five minutes while I ran down the hall to the little kitchen and heated some soup in the microwave or made a quick cup of tea. And, if someone tells you they’re coming to visit – order food.
  • Don’t sleep in your clothes. You may not think you’ll care but take some sweats or a pair of pajamas to sleep in. You’ll be more comfortable and feel more refreshed in the morning when you get dressed in regular clothes again.
  • Make sure to take the vitamins and other medications that you normally take. Also, keep a bottle of Ibuprofen with you. You’re going to be sleeping on a pull-out something or other that is going to be a narrow, lumpy, squeaky excuse for a bed. You’re going to be achy, tired, and probably between the stress and the fatigue, headachy.
  • If you don’t already know how – learn to do a mass text on your cell phone. People will invariably call to check on you when you’re changing a diaper, talking to a doctor, or feeding your child. Sending out mass text messages once or twice a day will keep untimely calls at bay while still keeping friends and family informed.
  • Bring something to do – it will make time pass more quickly. Television will only keep you occupied for so long. Consider bringing your laptop, a book or magazine, knitting, a book of crossword puzzles, or anything that will take your mind off things for a bit.
I’m sure I would have learned a lot more had Lauren’s stay been longer, but thankfully, we were home on the evening of the sixth day. She is doing well now and seems completely recovered. And, in case you’ve been following my recent tale of displeasure with the medical care Lauren received prior to her hospitalization – I am happy to share with you that she now has a new doctor.

Hospital - Day Five

June 22, 2010

We are now in the fifth day of a hospital stay for an unknown illness. Finding a diagnosis has been complicated by the inability of Lauren to tell us how she feels. After numerous blood tests, four chest x-rays, and a CAT scan, we finally received an answer late yesterday – pneumonia.

Yesterday was increasingly scary as Lauren was pasty pale, wouldn’t eat and was so very tired, sleeping all day. By six o’clock in the evening I was getting a little panicky. She was just so deeply asleep. She’s never like that. It took the nurse and I a good five minutes to get her eyelids to flutter. But, her vitals were all good. She must just be exhausted. About 8:30PM she woke up and ate a container of yogurt. An hour later she was back to sleep.

Today she seems brighter and stronger but still tired. Me, too. Of course, it doesn’t help that the garbage bins in the room must be noisily emptied at seven in the morning, while we are both still sleeping, after a night interrupted by vitals checks, diaper changes, and coughing. But that is the norm for a hospital stay – it’s often a terrible place to be sick. Thankfully, Lauren was put in pediatrics by the kind doctor who admitted us. It is quieter here and the nursing more understanding and available. It has not been a terrible place to be but has felt safe and supportive through the many uncertainties we have encountered in the last few days.

The trend toward using hospitalists during hospital stays, rather than your own primary doctor ,results in many, many recitations of Lauren’s history. We’ve seen four pediatricians and three infectious disease doctors in the last five days. Of course, Lauren is an interesting subject to them with her very rare disorder. I’m usually pretty good at doing a concise and pertinent history, but my stressed and sleep-deprived self is having a hard time wrapping her tongue around the various technical terms that describe Lauren’s many challenges. I’ve been having these “out of body” type experiences where I know I’m mixing up the words in the sentence, but have no idea how to unjumble them to form a coherent thought. I was able to get a few decent hours of sleep last night, crawling into bed with Lauren at one point rather that jumping up and down from my cot to check on coughs and moans and fever. So, today I am able to put these few sentences together to let you know that it looks like we may, at last, be improving, and now just need to reach the point when the doctors feel it is safe for Lauren to return home.

The Saga Continues: Reaching Out for Help - Part Two

In my last post, I told the tale of the inadequate and inconsiderate medical care that Lauren received when she recently became ill. Unfortunately, that was not the end of it . It actually got worse.

Lauren seemed a bit better the day after my last post - no fever, and she ate dinner. Noon time the next day, the fever was back. Then the internist’s office called to report on the blood work that was done two days before. The secretary or nurse (she didn’t identify which she was) said, “Dr. M asked me to call and tell you that we have the results of Lauren’s blood work back and her platelets are low. He wants her to see Dr M M (his wife).”

I asked, “What kind of doctor is Dr. M M?”

“An oncologist. Her number is 973-xxx-xxxx. Have a nice weekend.”

Luckily for me – I was sitting down. Luckily for her – we weren’t in the same room. Have a nice weekend??? You’ve got to be kidding me! You’ve just told me that my child may have cancer…on a Friday afternoon….when I will be able to reach no one for three days. And, to make matters worse – you are a messenger for a doctor who should have called himself with such an important message.

OK, breathe, breathe. I call the neurologist’s office and ask for one of the staff who has been with us from the beginning. “D, help!” I explain what is going on.

 She says, “I’ll call you back in ten minutes. In the meantime, can you get the results of that blood work faxed to me?"

 I call the secretary/nurse back and ask for the results to be faxed to the neurologist. She says, “Oh, I don’t know when they’ll be scanned in. Can you call back Monday?”

“No, I can’t. The neurologist is waiting for them.”

“Oh, gee. I’m going off duty soon. I’ll leave a note for one of the nurses.”

I hang up. D calls back. She’s discussed everything with the covering neurologist, and he has called an infectious disease specialist who is waiting for us at a hospital ER forty five minutes away. “Go”, she says.

I take a thirty second to break down, give in to the moment…and then we run. Three hours later, Lauren is admitted to the hospital. Tests, tests, tests. Everyone we encounter is compassionate, kind, professional (except for the young male nurse who had no idea where to put a catheter for a urine sample – definitely foreign territory for him – I hope he’s not married) And, now we wait. Oh, we have learned one thing. Apparently, Depakote (one of Lauren’s seizure meds) can cause the platelet count to be low. Dr. M apparently never checked that.

We’ve been in the hospital now for two days. We still have no answers. Lauren is still spiking fevers. I think we’re going to be here for awhile. The late afternoon sun of a reportedly beautiful summer Sunday is streaking into the room as Lauren and I watch TV and wait. Tonight, I will be spending another restless night on a narrow, squeaky, lumpy cot. I wouldn’t care where I slept if I knew that Lauren was progressing instead of fearing she is declining. I hope we have an answer soon. I’ll let you know….when I know.

Reaching out for help

June 16, 2010

I have a story to tell of the last few days of caring for Lauren. However, the tale is so infuriating that I’m having a hard time making myself relive it. It has to do with the lack of empathy, respect, and basic intelligence of our medical community, as it pertains to the care of someone with severe developmental disabilities. Lauren is not feeling well. As I’ve mentioned, her seizures have increased. She has become increasingly irritable over the last couple of months and is having mood swings that are getting wider daily. She doesn’t want to eat. We’ve been messing around with her meds, decrease one, increase another, so that could be the cause of some of her issues. But in the last few days, she’s stopped eating altogether. She’s spiked a fever up to 101 a couple of times. She sometimes gags when she tries to eat and she’s been very tired. Something more than a med change is causing problems here.

Needless to say my nerves are frayed. I’m stressed. I’m really tired. I can’t figure this out. She’s fading on me and I need help. I need someone to help me ferret out what is wrong with her, help her feel better, get her stable, care that something is not right. Here is what happened when I reached out for help.

First step, I call the neurologist – he’s on vacation. I’m instructed to call her primary doctor and the covering neurologist will be told what’s going on. I call the primary, they tell me to call her neurologist. Greaaat! I really think I need to rule out an ear or throat infection and that she should at least be seen by her internist. Well, they have no appointments with her doctor and they offer me one with someone she’s never seen before. I explain the difficulty of the situation and that she really needs to see the doctor that’s familiar with her. They say they’ll let her doctor know in the morning. In the meantime, the covering neurologist’s nurse calls back to tell me that he says, “Those symptoms are typical of a child that age who has disabilities.” Are you kidding me? Fever, not eating, is typical???? Does he not think that I don’t know what is “typical” for this young woman that I’ve been caring for all of twenty-four years? I really hate being treated like an idiot – and I let the nurse know that. The next morning the primary doctor’s practice calls back to tell me that her doctor says that this isn’t a “phone thing” and that Lauren needs to be seen. Hellooo, isn’t that what I asked for the day before? But he doesn’t have time for her so “any of the other doctors are qualified to see her”. That’s not the point but no one seems to care.

So I take her in to see this doctor who’s never seen her before. The nurse wants to take her temperature orally. You’re kidding me right?. So....she doesn’t take it at all. The doctor comes in checks her ears and throat, and can’t find anything wrong. He prescribes an antibiotic. Why? “Just in case.” In case of what? Do I really need to add another variable. Now I’m supposed to force an antibiotic into her three times a day for a week, which could cause stomach upset (especially since she’s not eating) or various other problems, to cure some unknown, possible ailment. Well, I think we’ll wait a bit to go down that path. So, now we are back home. She ate some pudding at lunchtime, and she just drank a milkshake. On the downside, the fever is back. If she doesn’t improve by tomorrow, I’ll probably go get that antibiotic. I don’t know what else to do. Reaching out to our medical community resulted in no gain and just more stress.

Shopping for Lauren

June 9, 2010

We all have limitations when it comes to the clothes that we buy. We consider many things before making a purchase – fashion, size, appropriateness, color, fabric care, quality, cost, etc.  Lauren needs some new things – shorts, capris, bras, a bathing suit, maybe shoes. Shopping trips can be time consuming, and….depressing. It can be doubly so when you’re shopping for Lauren. The usual limitations are compounded by the factors added by her disability.

First of all, consider the “bottom” – pants, shorts, capris. Lauren needs an elastic, or at least partial elastic, waist. Balancing her while pulling up pants is hard enough without having to zip a fly or manipulate buttons or snaps. When is the last time you saw a twenty-four year old wearing an elastic waist in a garment that wasn’t sweat or yoga pants? Not recently, I bet. But I’d wager that you have seen a slew of matronly grandmothers in a plethora of pastel, polyester, or ladybug-printed elastic-waisted pants. So when we shop for bottoms, that is what we find. With the additional limitation, that those grandmothers are rarely under a size 8, which is where the sizing starts – two sizes larger than Lauren.

Did we find shorts or capris? No.

Then there’s the bra. Lauren wears a 32C, no-underwire. Most manufacturers start their sizes at 34 these days. There is a sprinkling of 32As, possibly a B, never a C. I look at some type of stretchy, sports bra. They are racerbacks – too difficult to get on her. I take a no-underwire, sweet-looking 34C off a rack. Could I alter it? Bras are basically feats of engineering. Wouldn’t altering it kind of throw off the whole support structure? It could make it rather uncomfortable. It’s a framework of elastic, and mesh, and microfiber – do I really want to mess with this?

Were we able to find a bra? No.

A bathing suit is next on our list. Lauren swims at the Y every week. The chlorine just destroys the elastic in a suit. We need to replace her suit at least once a year. She needs a suit that is very modest – supportive, well-covered top and a skirted bottom or shorts. Once again – a matronly style, found – you guessed it – in sizes 8 and above.

Did we buy one? No.

Ah, shoes. It’s hard to find a woman who doesn’t love shoes, and who doesn’t covet pairs in every color, heel, and style. Lauren wears AFOs – an orthotic that reaches from the tips of her toes to just below her knee. With them on she is a size 7 wide, without them a 5 narrow. There are times, for various reasons, that Lauren wears her AFOs and times when she doesn’t. She needs shoes in two different sizes. But, most importantly, any shoe that Lauren wears must be flat – absolutely flat. It is the only thing that will work with the AFOs and without them, Lauren cannot stand with her heel elevated. Also, those AFOs are not easy to cram into a shoe, so they affect the style of shoe that we can buy. We do pretty well with sneakers, but, gee, a girl can’t wear sneakers all the time! So, if we’re near the shoe department, we always pass through in the hope that something will miraculously appear, perfect in every way including price, because let’s face it, the bottom of Lauren’s shoes never even get dirty. We’ve even resorted to the children’s department since a size 5 in women’s is actually the same as a size 3 in children’s (who figures these things out?). These days, however, even the kid’s shoes are hard to find without a heel.

Did any possibilities tempt us? No.

So, our mall trip has ended, fruitless and frustrating. I had even ventured into a “hip” (do they still use that word?) shoe store, crammed with colorful displays to attract the average twenty-four year old young woman. The two, pierced and platformed, clerks looked at me as if I had lost my way, wandered in by mistake, perhaps needed help finding my way to the Naturalizer store down the hall. They stared at Lauren and I as we wheeled amongst the gaily-patterned Converse and amazingly impractical feats of shoe design till I couldn’t resist asking, “How would you feel if your mother chose all of your clothes?” They just stared at me, wide-eyed with horror.

Tonight, I will put my feet up and do some internet shopping. I hope that my search is a success, contrary to past experience. The usual result is that if I am willing to spend $180 for a bathing suit or $80 for a pair of shoes that will never touch pavement, there is someone out there with just what we need.

Will I buy it? I sure hope I don’t have to.

Caregiver on Vacation

June 7, 2010

We have a caregiver on vacation this week. N, who does our weekday shift is taking a much deserved week off. Of course, this has an effect on Lauren. She doesn’t like her schedule messed with. She likes the basic structure of her week to remain constant. So…she isn’t happy… and then she is happy… and then she isn’t happy. What fun! Not that this is an unusual reaction for Lauren. She reacts to other changes, or an oncoming seizure, with mood changes and displeasure expressed with rocking and noise – much noise. But this week, I am responsible for helping her through the mood swings, while still trying to do most of what I need to do this week. This doesn’t work for me or for Lauren.

In self-direction, the issue of substitutes or filling in the gaps when a caregiver is sick, on vacation, or dealing with a personal responsibility, is very different than that of a provider. We could hire substitutes, but it’s difficult to hire a substitute to cover multiple shifts with different responsibilities and duties. I’d love to hear about how someone else is dealing with this issue. It is a worry. I’m not always going to able to fill in the gaps. How do I plan for that?

As for Lauren, I can certainly understand why she is unsettled, changes are worrisome for her. She has experienced caregivers who are here one day and simply gone, never to return, the next. Both N and I have been telling Lauren that she will only be gone for a week, but I think Lauren is still concerned. So, I will do my best to distract her. I pulled out some CD’s she hasn’t heard in awhile, and she is laughing right now as one just started to play. Tomorrow, we’ll go to the mall, one of her favorite places. We’ll have lunch in the Food Court – oooo, even better. But, it is also my parent’s sixty-fourth anniversary. It is something to celebrate and the celebration should not wait. So, I will do a small dinner party and prepare something blueberry, my father’s favorite, for dessert. I will try to involve Lauren in the preparations, if her mood allows. And, then it’ll be Wednesday. I have appointments. She will have to go with me. I hope she is in a good mood. I’ll worry about Thursday and Friday later.

The Job Description - Caregiver

June 1, 2010

My last post discussed how the role of caregiver goes far beyond performing simple tasks that enable an individual with developmental disabilities to get through their day or navigate their community. I made the point that as the trainer for Lauren’s caregivers, it is important for me to make sure that new caregivers know that they are also responsible for helping Lauren to live a life that meets all of her needs, not just the physical ones. When we do a new self-hire, part of the application that an employee has to sign off on is a job description. That job description should include the tasks that the employee needs to perform, and it should also include an explanation of the ethical responsibility for helping the individual, that they will be caring for, live a life of purpose and quality.

The directions for completing the employee application include an explanation of how the program participant should go about writing a job description to include in the application. The directions state:

The position description will determine what the DSP will be doing to support you. Essential functions are the basic job duties that the DSP must be able to perform. You need to simply list what you need the DSP to do for you. You may also list what you would like the DSP to do. Here are some questions to ask yourself in developing a position description:

1. What are the tasks that I cannot do independently?

2. What do I need assistance with on a daily basis?

3. What may I need assistance with?
The directions are very “task” focused. It leads the individual with disabilities into developing a job description that really does not outline all of the duties that the DSP should be prepared to perform. I would like to suggest adding some questions to the list, so that a more appropriate job description can be developed that will encompass all aspects of what the DSP’s role should be in an individual’s life. Perhaps we could add questions such as:

     What assistance do I need to achieve the goals in my life?

     What does someone need to do to support my relationships with others and to build new ones?

It is important that we recognize the importance of assuring that caregivers are aware that there is more to their job than meeting physical needs or of being a “keeper”.

An Additional Note:

In preparation for writing this post, I researched some job descriptions for DSP’s that are listed on the internet:

Short and cold from Indiana:
Direct Support Professionals (DSP) are responsible for providing direct care, treatment, and supervision of our customers in home and community settings

Direct and institutional from Arizona:
Position Responsibilities may include but are not limited to:
• Assure health and welfare of individual served at all times
• Complete first time service orientation with each new individual assignment
• Carry out assigned tasks such as bathing, dressing, and meal preparation as authorized
• Provide a communication link between person served, family and administrative staff
• Complete and submit time sheets and other required paperwork as directed
• Maintain training certifications
• Report to work on time and be actively engaged for full duration of your shift

Totally task oriented from a national group:
When working with the mentally disabled, caregivers will be performing a number of duties on a day-to-day basis. These duties include planning and preparing meals, helping clients get dressed and accomplish simple personal hygiene tasks, taking clients to the grocery store, on errands and to the doctor, helping their client clean the house and perform household chores and more.

And the scariest one from North Carolina:
  • Manifests in daily action a Christian spirit and lifestyle.
  • Demonstrates a working knowledge and understanding of the Institution’s structure, services, policies and procedures and job performance requirements.
  • Assures all rights listed in Domiciliary Home Resident’s Bill of Rights are exercised for each resident and gives assistance to residents in exercising these rights.
  • Maintains confidentiality regarding each resident and his or her records.
  • Maintains proper record keeping in all areas to include, but not limited to, management records and residents’ funds.
  • Purchases all food, supplies and equipment to meet the needs of each resident according to schedule maintained in group home and upon approval by group home administrator.
  • Responsible for greeting visitors in a positive and hospitable manner.
  • Oversees residents’ daily activities, assisting and supervising as needed.
  • Gives attention to medical and dental health needs of each resident upon consultation with Administrator
  • Provides transportation for residents.
  • Responsible for maintaining vehicle in good operating condition and/or reporting needed maintenance or repairs to supervisor.
  • Maintains proper administration of ALL medications, medication storage, and medication records for each resident.
  • Provides the required amount of weekly activities (14 hours) in coordination with Activities Coordinator/Administrator.
  • Documents all accidents/incidents according to Institutional policies and procedures and monitoring agencies
  • Follows proper procedures for restraints as ordered by the physician.
  • Follows all sanitation, safety, and building code requirements.
  • Cooperates with the licensing and monitoring agencies.
  • Performs other duties as assigned by supervisor