Friday, September 25, 2009

Links for Care Notebooks

This has been a crazy week. We met with a nursing company on Monday afternoon, but thus far every nurse they have assigned to our case has been either a smoker or a cat owner.

I updated some links for places with how-to's for putting a Care Notebook together and also downloadable forms.

Saturday, September 19, 2009

Being Organized #1- Care Notebook

I typically function with organized piles on my desk, in my laundry room, on my dresser, etc. However, in the first half of 2007 Talli spent a lot of time in the hospital with various types of sepsis, septic arthritis, and port change outs that I decided to put the time sitting in her room every day to good use. I put together her "Care Notebook".

This has been a life saver, time saver, and very much worth the 15 or so pounds it weighs to take to each appointment and hospitalization. It helps to keep me focused at appointments, especially if I have all of my kids with me. I think it adds credibility to me as a parent because I can give specifics to a physician on her history, labs, and medications; when I can give them a list that they can copy for her chart.

A fellow board member at the Propionic Acidemia Foundation put together the basic structure for the one I use, however, I add and take away as seems appropriate.

I recently took out all discharge paperwork out of the notebook. They just took up too much space and didn't really convey any information that I didn't have somewhere else. Also, the specifics of what medications were given at what time the day of discharge doesn't add anything to her overall health plans 6 months later. I tossed what I didn't need, the rest got filed.

It is a 3" D-ring notebook. I have two sets of write-on divider tabs (we need that many!). A velcro pocket folder holds prescriptions given to us at appointments or small notes. A business card holder keeps the cards from her various specialists. I used to keep a small 3-ring hole punch in there, but I really needed the space, the same goes for a pencil/pen case. A CD holder keeps digital medical files, which are mainly x-rays and other radiological studies.

I have smaller versions of the Care Notebook for all of my kids and myself. My husband has excellent health and sees a doctor for an annual physical because I make him. Other than that, he usually has some sort of major accident every 7-10 years, but since he has no underlying conditions we don't need to tote any records to the hospital with us.

When we goto appointments I carry Talli's Care Notebook in a canvas bag. When she is going to the hospital it goes in our hospital bag, which I will write about at another time.

Sections of Care Notebook:
-About Me Emergency Contact information; Emergency Information Form for Children with Special Needs; general information about likes, pets, foods, bedtime, etc. (think along the lines of someone stepping into your role and needing to know that your child will throw up ANY mixed texture food); Birth & Early Development; Diagnosis history, Medic Alert Record Summary, Medications (I use Post-it flags for each current med);

-Labs & Tests I am phasing out this section. I put labs in chronological order by type, so all CBCs were together, etc. However, for the most part it is a specific physician ordering a specific test, so I am now putting them in the sections for each specialty. The medical records prints labs for 2 different specialties on the same page, I copy it, so each lab can be in the proper section.

-Hospitalizations (This section is never up to date) It lists the dates of admission, name of hospital, address, doctor's names, reason, and outcome. Talli has had over 100 hospitalizations if you count outpatient visits, which is why it is not up to date.

-Contacts Health Insurance information, including a copy of each card. I keep expired cards as well, as billing can sometimes be delayed more than 12 months. Hospitals we use; the business card holder with provider information AND device information. For each implanted device she has had we have had an ID card with information regarding placement and model/serial #s.

-Supplies A descriptions of each supply ordered; company ordered through; reason needed; comments; prescribing doctor; and contact person at insurance if prior approval is needed.

-Nursing/Home Health Contact information for all companies; services performed; frequency; notes; and a phone log.

-Specialist subsections This is the reason we need 2 sets of divider tabs. Genetics; Nutrition; Pediatrician; Cardiology/Electrophysiology; Gastroenterology; Hematology; Allergy/Immunology; Endocrine; Orthopedics; ENT.

For each subsection I have the following: Contact information for the office & nurse; Phone log; Clinic Visit notes (these are my notes for each appointment); letters written by doctor to school, for ER visits, for travel, etc.; labs specific to that specialty.

-Medical Assistance/Case Management Programs We have case management through a state program for her metabolic disorder, so I have contact info and a phone log for that. I also have a section for the Case Management at our Primary Insurance company.

-Infusion Log A record of all Intravenous Immune Globulin infusions that she has received.

-Glossary/Reference Information This is VERY useful. It lists medical terms specific to her metabolic disorder, how to calculate things like Anion Gap, which may not be calculated on a lab sheet, Blood pressure reference chart by age & height; growth charts (If she didn't have growth concerns because of other medical conditions, I would have this in my pediatrician section, but since GI, allergy, endrocine, and genetics all care I keep it here).

-Forms extra forms for the Notebook, like phone logs and clinic visit sheets. I also keep school medication forms in case she is prescribed a medication that her nurse will have to give her at school.

I keep all of the Care Notebooks in a cabinet in my family room. The person who would take care of my kids in the short term if something ever happened to us knows where the Notebooks are kept.

I hope to post links to Care Notebooks and photos this next week.

Monday, September 14, 2009


My daughter is g-tube fed overnight. She wears S/M Goodnights when she sleeps, which do not hold enough most nights and she pees through them. We will be moving to some custom cloth pull-on pants as she had some bleeding sores from wearing them for a week at the hospital. We expect to continue night feedings as kids with Propionic Acidemia gave better labs if they do.

When she was a baby I consulted the book Baby Bargains and it suggested The Company Store for crib sheets. I got a couple of flannel crib sheets, which held up to twice a week laundering for almost 4 years. They no longer sell the flannel crib sheets, but their percale is almost as durable.

We use all cotton bedding for her as she is on L-carnitine. Carnitine causes a "fish" smell, which worsens with constipation and is concentrated in sweat, urine, and stool. The smell seems to hold onto synthetic fabrics, hence the reason for the all cotton.

mattress cover
Her mattress is encased in a high quality cotton dust mite cover. I highly recommend one that is zippered fully on three sides for easier removal. I purchased hers from National Allergy.

For sheets I mentioned above, we use Company Store. There is an outlet in Madison, WI that has great deals on bedding. We have 2 flannel set sets and 3 percale. One set I got on clearance for $6.99 and another I got used on ebay because it was a very cute ballerina print.

water proof barriers
For a while we used Carter's waterproof crib pads, which are two layers of flannel with a waterproof layer in the middle. They can be hard to find in the stores and after many washings the layers start to peel away from each other and the water proof protection goes away. Sometimes I see them at Babies R Us, Kohls, and Carter's Outlet.

What I prefer is a custom made mattress pad from a WAHM that I found through She used a layer of PUL (for the waterproofing) and a layer of white fleece. She can also add suedecloth, flannel and Zorb. She was pretty quick to get it to me and was comparable in price to the Carter's crib pads. I line dry mind so the PUL will last longer. By the time the rest of the load is dry in the dry this is dry as well. Her store is on hyena cart.

I love to quilt and for a while my daughter loved ballerinas. I pieced a cute all cotton quilt together and a friend used her quilting machine to do the actual quilting on it. Well, it is just not holding up. It probably gets washed 3-4 times a month and the binding is shot and there are a couple of small holes.

What has been far more durable are flannel Company Store duvet covers and all cotton blankets from JC Penny. I do not have a duvet in the cover mainly because of her dust mite allergy and since we are changing her bed almost everyday it would be an additional pain to move the duvet around.

Sunday, September 13, 2009


I have been thinking a lot about the importance of friends. Today, I was able to attend Church services while my husband stayed home with the kids. There was a case of H1N1 in our congregation, so we are being cautious. In our women's meeting, the lesson was on friendship and the importance of having and being a friend.

It is so important for those with special needs kids to have good friends. The ones that will sit with you while your child is critically ill, calls you to make sure you have eaten, brings you dinner (or Portillo's chocolate cake), gets away with you, and watches your other children when you have appointments.

A night out
Last night, I was able to get a much needed break. A girlfriend and I went out for a small bite to eat. We didn't like the atmosphere of the first place we chose, so with the top down on my husband's convertible (and car seats in the backseat) we headed to a different local that had some live music. She laughed at me ordering a Shirley Temple (they only had Diet Coke, which I hate) and we talked, people watched, and listened to the band play.

We had a few hours of peace. There were no crisis at either of our homes. Formula was made and medicine was given without any calls to check in with me. We laughed and joked and talked about death and sickness.

I also got a small dose of nostalgia when I tasted the chips that we had ordered, served with Ranch dressing. They tasted just like the "spuds" that my favorite pizza place served in my hometown in Oregon. Pizza and spuds were always served with Ranch, although, there was ketsup available, which I prefer. Many family dinners were held at Abby's Pizza, after football game gatherings in high school, and our traditional Christmas Eve dinner was often there.

Hand holding
I am grateful for the friends who would sit with me in a hospital room with my daughter, hold my hand while she was in a lengthy surgery, and watch at a bedside while I tried to comfort my daughter through the pain of one of many surgeries. The two friends who recently did this with me are not strangers to hospitals. One has a husband with Stage 4 kidney cancer, who is in his early 30's. The other has a son with Propionic Acidemia and has spent almost as much time in a hospital as we have, knowing that many hospitalizations could end up with one less child at home.

Another friend, whom I saw today is not a person I have known for very long. We first chatted at a New Year's Eve party that she threw to welcome in 2009. She is a nurse and knew my daughter had allergies, so she was pointing out how foods had been prepared and which items were definitely not safe for her that night. A few weeks later, her oldest child felt ill and within a few days had a heart transplant. Since I couldn't visit her, while her son was in the hospital, I wrote letters to her and we chatted once her son could be back out in public. Today, as she touched my arm and said "I am so sorry, I just found out." I felt loved, comforted, and understood. While a defibrillator (ICD) is much less serious than a heart transplant, we understand the others experience.

What a relief it is after a stressful tiring day to have someone bring you a meal. Last week, we were blessed by two friends bringing our family dinner.

Other times, friends have driven through a snow storm to bring us food at the hospital after a lengthy stay and had pizza delivered because they couldn't quite get dinner on the table at their own home either.

Thursday, September 10, 2009

Special Needs Mama

I am a private person for the most part, but am willing to share if someone asks about me or my experiences.

After spending a weeking in a hospital PICU with my 7 year old and two frustrating days at home arranging for her care I thought that I should at least share some of my experience to help others. I have liked to think that I could be a regular stay at home mom and handle the care of all of my children myself. It has come to a point where that is not the case and I need someone here in my home to help me. This has been a more difficult change than having her feeding tube placed because I have to fight for it.

My seven year old has Propionic Acidemia (, secondary immune deficiency (, Long QT Syndrome (, asthma, allergies, GERD, esophagitis, and hypothyroidism. She is primarily tube fed with her Zevex Entralite that we love! She is also a lover of almost everything: people, amusement park rides, Chuck E Cheese, everything electronic, her brothers, her classmates, her imperfect parents, fishing, playgrounds, etc. She seems to be able to balance in her mind the trauma of needle sticks and IVs with the video games she will play at the hospital and TV she can watch on the way to appointments.

We have two healthy boys. A 2 year old with some pending allergy tests, who had his tongue clipped at 4 weeks, and a 5 month old preemie who is delighted by his siblings as much as they delight in him.