Pillow Pets

Pillow Pets are awesome... Aside from being really cute, they are incredibly soft - which is what Kai always loved. Of course when I saw these in the store I wanted to try one out for Kai. I chose the Bee because of the long antennas. I was hoping that they would help Kai be able to play with the pillow. It worked great. Since Kai's hands were fisted, I could wrap his fingers around the antennas with the pillow sitting on top of his chest and he could hold on and move the bee from side to side. Added bonus... the ball at the end of the antenna kept his hands from sliding off!

The only problem with the bee pillow was that it was a little too big and heavy for Kai to move around more than just side to side while on his back. A few months later I saw that they came out with smaller pillow pets. I think these would be light enough for Kai to really move around. I did notice that the antennas are a little shorter than on the full size pillows. They may have been long enough for Kai's little hands to hold on to, but I assume he would have outgrown them pretty quickly as he grew. Unfortunately I wasn't able to try the smaller ones out, but I would recommend other parents do. Kai received other pillow pets as gifts but was unable to play with them because there just wasn't anywhere for him to hold onto, although he did get to lay on them and loved the soft feel... There are a few other pillow pets that have the same type of antennas that the bee had to choose from, like the lady bug and the butterfly.

Example spreadsheets used for in-home nursing

When Kai qualified for in-home nursing care I was so excited. It was such a relief to finally have the help we needed. Kai received 16 hours of nursing care, and the other 8 were up to us. This created quite a mess when figuring out who was going to take care of what. To help bridge the gaps, I created spreadsheets the nurses and I could use to track Kai's care. The nurses completed daily charts through the nursing agency but I was not allowed to use them for my shift. Also, their charts didn't include any details on his therapies or equipment cleaning. On a few occasions I found that things weren't getting done because one shift nurse thought another one was doing it. I also found myself repeating work because I didn't know whether it had been done or not.

I was planning on returning to work, so I needed a tool to help keep track of what needed to be done when and also to help all of Kai's caregivers communicate with each other. I needed a system that would allow me to take a quick look back and see how Kai was doing while I was gone. By creating my own charts, I could accomplish just that.

I tried to keep it as simple as I could for the nurses, keeping in mind that they would be double charting. Unfortunately, I can't attach documents onto my posts so I am attaching pictures of them instead.

Anyone can personalize these forms so that they work for you. They are easy to create on your own as well.


Daily Schedule

 The form I found most helpful was Kai's daily Schedule.

I shaded in the hours that each task, listed on the left, should be done. I asked that the nurses and I initial in the shaded box when the task was completed or annotate a measurement if necessary (for example; oxygen level, secretion description, heart rate, etc). My chart had the following tasks listed on the left:

• Secretion description
• # of wet diapers per shift
• # of poopy diapers per shift
• position change (please indicate R(right side), L(left side) or B(back)
• Temperature
• Heart Rate
• Respiratory Rate
• O2 sat
• sat probe change
• hold feeds
• change feed bags
• flush J-tube 10ml
• oral care
• cough assist
• vent check
• oxygen tank level
• water level in vent bag
• stretching
• activity (Please indicate: H (holding), C (chair), S (stander))
• bath time
• trach care
• change bedding
• cuff check
• nap time
• clean extensions
• weekly cleaning assignment
• medication given

One thing I really liked about this sheet is that I could get more information about his daily care and activity than I could get from typical medical charting. I could make sure Kai was getting out of his bed for parts of each day and was getting stretched. That was important to me. Whatever your focus might be, you can add this into the daily schedule and indicate how often you would like it done. I kept a week's worth of spreadsheets on a clip board and the nurses all loved it. It gave them plenty of direction and they followed it religiously.


I also created a few additional spreadsheets that helped us stay organized and on top of things.


Medication Schedule

This form came in handy because Kai had a GJ feeding tube. Some of his medications were administered through his G tube and some through his J. To keep everything straight, I created this form and kept it on top of the rest for easy reference. Believe me, I had to refer to this many times myself.  I simply put the times along the left hand side and made columns for G tube, J tube and RK (Respiratory treatments) and filled in which medications were given in which tube or treatment at the corresponding time.



Supplies Needed

This is a form I created so that when supplies ran low I could get them reordered in time. We could write supplies down as we noticed they were getting low and when it came time to order my monthly supplies I could just grab this form to make sure I didn't miss anything. It has just three columns: Date, Description, and Number remaining. Nothing fancy here... but it did the job perfectly.

Weekly Cleaning Schedule

This form was very important to me as well. It spread all the cleaning duties out over a week to balance out the tasks. Then I would add a task on the daily schedule to complete that day's cleaning duty. I labeled the days across the top of the columns and indicated the tasks underneath. Example: Disinfect syringes, Clean canister used for suction rinse, wipe down all equipment. Then I could add notes on the bottom for daily and monthly tasks. Example of daily tasks: replace sleeved catheters. Monthly example: replace vent filters and suction canisters.

These sheets are easy to make yourself maybe I just gave you idea's on how to create your own! Please feel free to email me if you would like me to send you a template for one of the forms above: helpingkaiplay@hotmail.com

2011 Pediatric Bioethics Conference: A Parent's Perspective

The Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital hosted its seventh annual international pediatric bioethics conference,"Who's Responsible for the Children: Exploring the Boundaries of Clinical Ethics and Public Policy," on July 22 and 23, 2011, in Seattle. The conference featured nationally recognized speakers in bioethics and drew over 200 participants from across the nation and worldwide. Most participants were medical professionals.

There were many questions that the panel sought to address:

Should individual providers or healthcare institutions provide medical care to children whose families cannot pay?

Do providers have an obligation to tell families about healthcare options that will not be offered because of financial constraints?

How do we balance obligations to provide better healthcare with obligations to improve other factors that influence health, such as diet, exercise, housing and education?

Should care to children be prioritized based on social, physical or mental health status?  who have expensive technology-intensive care needs, such as ventilators, dialysis or transplants?

What about children who have expensive technology-intensive care needs, such as ventilators, dialysis or transplants?

What about children with intellectual disabilities who require special resources, yet will remain dependent on society? Children who have mental healthcare needs? Children who are undocumented?

How will healthcare reform affect the goal of providing for the basic healthcare needs of all children?

You can view a webcast of the entire conference or each individual presentation by clicking here.

I was very excited when Seattle Children's Hospital asked me to speak at this conference. They wanted a parent's perspective, and I have the experience they needed for the presentation. The organizers of the conference wanted to put personal stories and faces to issues families deal with everyday. I said that I would love to speak for all the parents out there that don't have the opportunity. I feel I have a lot of experience in navigating the healthcare system when caring for disabled children because of Kai's progression. I have gone through many different situations dealing with the healthcare system, hospitals and homecare. Having a child that is not able to attend daycare, but does not qualify for home nursing is a challenge many families face. What do you do? How do you provide for your family? I went from confronting this issue to having such a medically intense child that he needed 24 hours of nursing care at home, and we could not qualify for that. Kai, and consequently, my partner and I, began living at the hospital in order to have the best possible care for Kai.

The other parents that spoke had great examples of the difficulties families experience as well. I would love to hear everyone's thoughts and experiences on these matters.

Part 2: 6 to 9 months, The Road to a Diagnosis is bumpy and long, but you have to start somewhere...

Kai’s appointment for an evaluation to assess his physical abilities was set at the local therapy center in December. We had to wait a couple months to get in so I turned my focus on finding a doctor that would spend some time actually addressing my concerns. I had given up on the local pediatricians. I decided to take Kai to my family doctor. They were able to schedule Kai an appointment the next week for his six month well child visit. While at the appointment, I voiced my concerns about Kai’s development, by that time I had quite a few. Not only could he still not hold his head up and roll over, but he also was not really playing with toys, his hands were fisted, and he never really paid any attention to things on the wall or around him at a distance. My family doctor was great. He listened to all of my concerns and even asked why I had not voiced these concerns before. I told him the story of the other clinic visits and the ridiculous answers I was getting from the other doctors. He told me I had a long road ahead of me, and he was definitely right about that.

Our family doctor first referred us back to the original pediatrician’s office that Kai visited as a newborn. The pediatrician then sent Kai to the local hospital to have a CT scan of his head and some blood work done. I only waited a couple days for the results, but it was so stressful. I finally got the call after work one day. Kai’s doctor said the blood work came back normal and that the hospital reviewed his CT scan and had some concerns, but weren’t sure so they sent the scan over to the nearest Children’s Hospital for a second opinion. The second opinion came back with no concerns. The pediatricians advised us to wait and see. I told Kai’s doctor I was not willing to wait and see, so he referred us over to the Children’s Hospital neurodevelopmental clinic. We made the soonest available appointment which wasn’t until late December, over two months wait.

Unfortunately while we were waiting for these appointments Kai began to get sick. He started working to breathe. Some days were worse than others. I took him to one of the local hospital’s emergency room on numerous occasions throughout this time. Every time we went in, we would go back right away because I would tell them he was struggling to breath and they would do a chest x-ray. Then the ER doctor would come in and tell me Kai had a viral infection in his lungs. There was nothing they could do but wait for it to go away on its own. After two months of this, I started to get very concerned. I voiced my concern to the doctors every time, and they would just tell me sometimes a viral infection takes a couple months to go away.

On the last ER visit things got interesting. I was fed up! I told the ER doctor I refused to leave and wanted Kai admitted. I told him he would stop breathing sometimes and something was wrong. The doctor told me that I needed to stop bringing him there and to take him home. Apparently, according to this doctor, if he was admitted for no reason Kai’s insurance would not cover the cost, and I would have to pay the bill. I was very upset by this point; I was crying and telling him I knew something was wrong, but he just left the room and didn’t return. We sat there for over two hours. I did not want to take Kai home again without making sure he was okay, but no one even came in to check on us during this time. I figured he wouldn’t get very good care at this point anyway, so I left. By this time we only had about a week until his appointment at Children’s so I was just hoping Kai did okay until then and hopefully they would find out what was wrong.

In the midst of all of the ER visits we were able to get into the local therapy center for evaluation. By this point Kai was 8 months old. He was still not holding up his head or rolling. He was kicking his legs a lot, but only out and not up at all and he had a tendency to look upward. He did begin smiling all the time though, which was great! The center tested Kai using the Bayley Scales of Infant Development-Third Edition and the Battelle Developmental Inventory-2^nd Edition. The therapy center would provide services through their Early Intervention Program if Kai scored between 1 and 5 on the Bayley and a score of 77 or lower on the Battelle. Kai scored a 1 on both fine and gross motor skills on the Bayley exam showing significant challenges with his ability to move his body and control his head, and low muscle tone. Kai scored 90 for the adaptive development and a 74 for the cognitive development on the Battelle exam. His adaptive skills such as eating strained foods from a spoon, pushing food around in his mouth with his tongue and placing both hands on his bottle at feeding but not supporting the bottle were at the level expected for a child of eight months. Kai was not yet performing skills typical of an eight month old in the area of cognition. He enjoyed watching faces and was able to visually follow with his eyes and head. He also turned his head to follow sounds and responded positively to being held and visually explored his immediate environment. He was not using more mature gross and fine motor skills such as: reaching for toys, amusing himself with a toy, feeling and exploring objects. With these results Kai began occupational therapy ten days later in our home and daycare.

When we pulled up to the Children’s Hospital the next week, I was so nervous. I was hoping they would figure out what was going on. I had heard so many people mention how great this hospital was. We were about to find out for ourselves. We only had one appointment with the neurodevelopmental clinic. We entered the room, and I spent about an hour answering questions and explaining what had been going on: repeated respiratory infections, noisy breathing and developmental delays. The neurologist patiently went through every detail with me. Looking back now, I realize Kai had feeding difficulties, but I didn’t put it all together until this doctor put it all together for me. Kai’s weight was now below the 3^rd percentile, we were repeatedly putting his pacifier back in his mouth for him and he took over 30 minutes to finish a 3oz bottle. The neurologist wanted to get a CT scan, and I told him that Kai had one done and it was sent over there for a second opinion and we were told it was normal. He opened the scan up on his computer and looked at it in silence for a few minutes. He then turned to me and said, “Well, I am concerned.” I lost it. I just started bawling right there in the room. It was like my heart had just gained 15 pounds.

The neurologist we met that day would follow us through our entire journey. He never left Kai’s side from that day on, and became one of his best advocates. He admitted Kai that day for failure to thrive to address his feeding and respiratory issues. As I sat at the entrance waiting for Kai to be admitted, I cried and cried and cried. I missed a step. I didn’t make him right. At some point in the pregnancy, I messed up. These were the thoughts going through my mind. I held him and just cried. I still struggle with these thoughts today. Deep down, I know I didn’t do anything wrong, but when your child struggles I, like most mothers, needed to blame someone. I was the closest target, so blaming myself was the easiest thing to do.

The next morning, I was feeling better. I started to realize Kai was going to get the help he needed, and people were finally listening to my concerns and addressing them! I was told Kai had hypotonia, a condition of decreased muscle tone. Kai first met with the neurology team which ordered an MRI of his brain and blood tests which showed hypoplasia of the cerebellum. This meant his cerebellum was slightly smaller than the average size. The blood tests Kai had drawn wouldn’t come back with results for weeks. We also met with the infant feeding team, which recommended thickened liquids and purees. Kai had a video swallow study the next day to assess his feeding abilities. They fed Kai with many different consistencies of liquids, purees and bottle types. He failed this test. I was shocked. His oral phase was characterized by: overall oral phase inefficiency, uncoordinated suck-swallow-breath pattern, reduced tongue shaping, reduced bolus control, pooling on the floor and sides of the mouth and developmentally delayed. Kai was what they called a silent aspirator. When someone chokes while drinking a glass of water you will hear them say, “it went down the wrong pipe.” Well, Kai’s formula went down the wrong pipe every time he drank, but he didn’t gag. There was no reaction. It was during this time that I realized all of those previous chest x-rays that showed a “viral infection” in his lungs was really showing us the formula that had been going into his airway. Here again was a huge smack of reality for me. Looking back you can always see all of these obvious signs of what was actually happening, but I didn’t have the experience to identify what those signs were pointing to.

After the study, Kai was switched to only liquids that were the consistency of honey and purees. He was no longer able to drink thin liquids. Due to his suck difficulties, we had to squeeze his cheeks together while feeding him a bottle. We were all worried if Kai was going to be able to drink enough fluids this way. He was already weak when trying to suck from a bottle, and we were switching him to a honey thickness that was going to be even harder to drink.

While admitted, Kai was also examined by the hospital’s physical therapy center. Recently, Kai had stopped bringing his hands to his chest. While on his back his arms now remained on the floor. At home we started using towel rolls to help him sit in his high chair, but we were unable to use a bumbo chair, exersaucer or swing. His local therapist was making him some gloves to keep his hands open. Kai would bear some weight through his legs in supported standing. He was also starting to bring rattles towards his mouth which seemingly showed improvement. He was making several vowel and consonant sounds, but not yet babbling. When lying on his side Kai could roll to his back and could also hold his head up briefly while lying on his stomach but would tire out quickly. We were mostly working on tummy time to work on head control and side lying to practice bringing his hands up in front of his face to play.

The big question in everyone’s minds at this point was, is what Kai has a progressive disorder or a congenital disorder? Is he going to get worse, stay the same or get better? No one knew the answer, so I was just going to keep working with him to hopefully help him get stronger.

Kai proved to all of us he could drink enough of the thickened formula. He gained some weight, so we were sent home on our fourth day at the hospital. I had some answers, but not all of them. Just having some answers made me feel so much better. Having the answers to the current problems that were making him sick and having solutions to them was enough for me. I hoped that I would get answers to why Kai was weak, but I was happy with the progress made in just four short days.

Yard Sale/Bake Sale/Silent Auction Fundraiser for Kai Lucas

My friend Susan (she ran the daycare Kai attended as a baby) and my mom Roberta organized a fundraiser for our family. They wanted to raise money for us to help pay for food costs and other bills while staying at the hospital with Kai. I was so impressed by everyone's hard work! Especially Susan and Roberta who worked on the fundraiser for over six weeks. Roberta sent out letters to over 100 businesses and followed up with phone calls and visits to get donations for the silent auction. Susan spent hours in her garage organizing all of the things donated for the yard sale. Many of the things she picked up herself. Roberta contacted local radio stations and her cousin even sent notices of the event to the local news channels. She also had 400 colored bracelets made with Kai's name and this blog address on them.

The day of the event went great! So many people showed up to help set up and brought baked goods to sell. I was able to attend and am so grateful for everyone's support. There was tons of stuff for the yard sale, there was a bake sale and three tables lined with silent auction items to bid on! My uncle Charles came and set up his DJ equipment and played some awesome music for the customers. My sister Rachel offered face painting and sketches for donation. There was soda and water in ice chests for sale. All day there was a steady flow of customers. It was a huge success! About mid way through the day, one of the local news channels showed up and taped Roberta talking about Kai, our family and why they had put the whole thing together and aired the show later that day.

I was not able to spend the whole day at the fundraiser. I had driven over to Yakima from Seattle where Kai was admitted for the event. It is a two and a half hour drive, and Kai was having a rough weekend, so I wanted to get back to him. The next day Susan drove over to Seattle and brought a bag of cash to the hospital for us. I was shocked at the amount of money raised. They raised over $4,500 in one day!

 When the news station aired the story about the event, they said that the money raised from the fundraiser would help pay for medical bills and adaptive toys.  Since Seattle Children’s Hospital took great care of Kai and provided him with everything he needed, the money was used for something even more valuable. What she and everyone else involved did was give me time with my son. That is worth the world to me, and I am just so thankful for everyone's help.  Kai was in the hospital for the better part of eight months and our savings was gone. His medical status continued to decline even with all the medical interventions we tried to stable him out. All I wanted was to spend whatever time I had left with him and because of everyone's help I was able to do that. Thank you to everyone for supporting Kai and our family!  

In Loving Memory of Kai Samuel Lucas April 7, 2009 - August 14, 2011

Kai Samuel Lucas passed away peacefully in his mother's arms on Sunday, August 14th, 2011. Although his life was short, it was filled with great happiness and love. The love he showed to everyone he met was and is an example to be followed by all. His smile will live in our hearts forever.

The sweetest letter I have ever received:

Dear Jessica,
     As your nurse care coordinator, I find myself once again, needing to make a referral. Since I believe in God and heaven, I called God, in my usual way, and told him about Kai. I didn't have to tell him about insurance benefits or anything like that, and right away, God said he had the most perfect place for Kai and that he was just waiting for him - and that he already knew he was coming.
     God did tell me though, not to send any of the equipment because Kai won't be needing any of it. Everything he needs will be right there until his family comes later. To be honest, this referral was much easier than changing from Apria to Childrens Home Care - But... also much harder.
     So, as usual, I want all of our bases covered, and Jessica, this one is for you. A paved pathway for a very special boy with big blue eyes and the most gorgeous eye lashes.
     Some people stay away from the hospital after you leave, and some people come back. Whatever you decide just know that there are going to be times when I think of you - and remember....

The Cord

We are connected,
My child and I, by
An invisible cord
Not seen by the eye.

It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.

This cord does it's work
Right from the start.
It binds us together
Attached to my heart.

I know that it's there
Though no one can see
The invisible cord
From my child to me.

The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.

It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.

And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.

It pulls at my heart
I am bruised...I am sore,
But this cord is my lifeline
As never before.

I am thankful that God
Connects us this way
A mother and child
Death can't take it away!

Anonymous