The tapestry of the life of a medically complex family

Archive for May, 2012

The Harsh Light of Hindsight

As a parent, we spend lots of time everyday making decisions that we hope are in the best interests of our children. With a child with complex medical needs, the decisions are more numerous, more weighty, more often life & death. I look at the choices, weigh the benefits and the costs, and often consult with my level-headed pediatrician before making the choice we move forward on.

But it doesn’t make it easier when I am faced with reversing a decision. The final choice, the impetus for the change or holding of the course, all falls upon my shoulder. When the choice is re-thought after a change- even those unforeseen, unpredictable- hindsight is a harsh reviewer. The harsh light of the week is focusing on my son’s success without a GTube.

His original GTube was placed when he was 7 months old. The surgeon performed a Nissen Fundoplication to relieve his severe reflux symptoms & aspiration, then placed the GTube because he had not yet learned to take ANYTHING by mouth. It was a good option- the RIGHT option- to replace the NgTube that his sister would daily removed from his face and pull out of his stomach. He spent over 6 weeks- his first Christmas- inpatient recuperating from a secondary infection he contracted during his first week with his new tube. When he got home, he was easily able to be given his daily calories and nutrition.

8 months later [15mos old] he began experiencing break-through vomiting past his fundo. He still could only tolerate GTube feeding at the low rate of 1- 1.5 ounces an hour but he was beginning to take some of his feeds by bottle, up to 3 ounces at a time, so tube feedings were limited to overnight. Over the next several years, he took more and more food by mouth and overnight feeds were limited to “fill-in” any missed ounces of formula from during the day. He still only tolerated feeding at 2-3 ounces an hour, but typically only needed 6 ounces at most on any night. By the time he turned 4, the GTube was only being used during bouts of significant illness, although he often threw up fluids delivered through his feeding tube as well. By the time he hit 4.5 years old, the feeding tube was still in place but hadn’t been used in a very long time.

Its lack of use, coupled with his regular pain complaints related to its position in his stomach after 4yrs growth, led to a plan to remove it. Although the doctors agreed to a timeline, his pain complaints intensified in mid September, and he regularly pulled at it trying to adjust it to a more comfortable position. When he knocked it out 2 weeks before the doctors’ timeline, I did not replace the tube. By the time the next nurse shift began, the tract had begun healing and tube replacement would not be possible. The doctors accepted the change in timeline and we moved on in the world of oral feeding.

20 months from the time of its removal, my son has gained 10 pounds. He rarely vomits, has grown inches and ingests 1600-1800 calories on most days. But the GI & other doctors are discussing re-placing a GTube in the near future.

The challenges today are:

  • 6-8 waking hours EVERY day are spent sitting at the table with food or drink in front of him to meet his caloric needs
  • when he eats, he still has difficulty tolerating normal meal volumes – e.g., dinner is often 1-2oz of meat that has been cut into very small pieces
  • he is rarely able to drink 6-8 ounces of fluids AND take in food without a “break” between food and drink
  • he drinks ONLY high calorie “peanut butter milk” [home-made formula] and has no access to, nor room for, “free water”
  • his limited intake may not be hydrating him enough- and this may be affecting his health in many areas (heartrate, fatigue…)

So this week I am talking with doctors about placing ANOTHER GTube in my son. I am admitting defeat, failure of the 2 years of weight gain and growth being the “RIGHT” choice on the path toward wellness for my son. Hindsight is spotlighting another error, made by me.

Showing the Money

Five years ago I was employed outside my home and preparing for the homecoming of my ex-27 week twins who are both tracheostomy dependent. I am a single mother of 4, one who is now 19 and continues to live with family, my now 6 year old twins, and a nearly 5 year old who is also an ex-preemie. It was hoped my children would only have tracheostomies through toddlerhood, and then be able to get their trachs out. This has not yet been possible and I am still unable to work outside my home as a result of the intensity of their care.

Because all 3 of my younger children are ex-preemies, they have regular follow-up with multiple doctors, in multiple specialties, resulting in 8-10 doctor visits per month (x3). Because their needs are complex, their care is provided in our regional children’s hospital that is 100 miles round trip from our home. With gas prices, tolls and cost for parking at each visit, a typical trip to a specialist costs between $40 & $60.00. During a 10 visit month, our minimum costs just to travel & park are $400.00 . Summer visits tend to be at a higher number per month given that we see the “normal” clinics of dental, eye doctor and pediatrician. None of the above takes into account the extended costs when my children stay in-patient, which occurs frequently.

The utilities cost for maintaining my children is significant. Their respiratory medications are delivered by an electric nebulizer compressor- they receive about 24 neb treatments between them on a typical day. Their overnight humidity and oxygen is delivered by another type of compressor. Their chest physio-therapy is delivered through another electric device. As they are also heat-intolerant as part of their condition, when the rest of the area is thrilled to finally have a beach day after winter, my family is running air conditioners throughout our house to stabilize my children. These medical necessities, in addition to regular electric use to run a household, make my electric usage more than 250% that of any family in my area of similar size- the bills are proportional.

Each day I have with my children is worth all the money in the world to me- I just wish it didn’t TAKE it!

Docs’ Orders

I can’t write much about what is going on. I realize everything I say is under too much scrutiny, too much review. Today I cannot say much about what is going on- the REAL of what is. I will only talk about the “generic”, the “what needs to happen”, the “what happens”.

When a doctor orders nursing support for a family, they intend for a competent medical professional to provide assistance, training & support in all activities related to keeping the medically complex child safe and at home as much as possible. The intent is a level of care that is frequent enough and comprehensive enough to provide adequate medical intervention to the child to be maintained at home. For all families and some nurses do to make this happen, to make this possible, there are factors which thwart their efforts. It is NEVER true that ordered hours are filled. It is NEVER true that nurses who provide home care have ever seen nor used any of the home medical equipment provided to the family to care for their child. It is ALMOST NEVER true that any nurse has the same or more knowledge of the care and monitoring for a child with complex medical needs, when compared to the parent.

It is OFTEN true that basic care activities have to be taught and re-taught by the parent. It is OFTEN true that nurses are unfamiliar with the purpose and function of a trach- how many nurses ask how to attach the feeding extension to the trach or try to place the trach in UPSIDE down after observing a trach change. It is sad that these errors are common across families the world over.

I hope doctors will understand why it is necessary to get doctor’s orders detailing the minutiae of every task to keeping kids safe, clean & secure. Orders are needed if families expect nurses to rinse bedding and change wet bedding and pajamas when a child has soiled him/herself. Orders requiring nurses to clean the cups, plates and utensils used to provide nutrition to the child- rather than serving the child on dirty surfaces. Orders requiring the nurses to follow the stretching exercises list on the wall of the child’s room to increase the child’s strength & flexibility to support their health status. Orders to remove the trash from the child’s environment when needed or at the end of a shift. These orders may seem ridiculous when first requested, but they are MOST important in protecting families – and nurses – from the repercussions of doing ANY task without an order.

Testing Torture

Working hard to provide data for docs is a challenge. We want our doctors to “see what we see” but that requires going to baseline conditions, in my son’s case: no oxygen. Today he’s wearing a Holter monitor; 5electrodes glued to his chest for 24hrs.

We go through the day: feeding, sleeping, OT, indoor play, outdoor play. He’s winded lots of the time indoors- high breathing rate, working with his belly to breathe. Then we head outdoors. Unfettered by oxygen tubing today, he lopes around the backyard trying to keep pace with his sisters. His younger sister slows down after 2 circuits around the teeter totter, tired, complaints of pain in her legs. He runs until he needs to grip the teeter totter to steady himself- he made it around 6 times with other brief pauses. This pause is different, leaning into the structure for support, he appears dizzy & unstable, unable to talk. 30 seconds later, he’s off again. Pauses are more frequent- only part-way around between each. I see the data I’m referencing- but does the machine collect it while I torture my son?

Baby Teeth

You look at her photos. The smiles are many. Family gatherings. Outings. She is a little big for a stroller, but she looks comfy sleeping there in the park. The youngest seems to be doing well- smiling around the oxygen cannula, spinning in some pictures. She wears it in some pictures too, and a cute feeding backpack.

Then the word “Hospice” appears in her feed. I look again- yep, “early Hospice”. I look at today’s pictures- she still has all her baby teeth.


It’s what I feel today

Its ever-present, here to stay

I cannot shake this feeling of things I “shouldn’t have”… Agreeing to med changes when not really sure. NOT following up to ensure the safety net would still be available. Calling. NOT calling. Trying. Not trying hard enough. Getting not enough done. Trying to get everything done. Yelling. Withdrawing. Typing & posting. Typing, not posting. Skipping steps. Backtracking. UGH!

All I can do now is move forward. Try again. Try to push the regret away from the front. Start fresh today. I am trying hard, but not working hard enough. And that changes today.


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