The tapestry of the life of a medically complex family

Archive for the ‘Judgement’ Category

Of Buckets and Why

My kids’ genetic material is being sequenced to try to determine which type of metabolic disease they carry that may ravage their body and take them before they experience their 40s… or 30s… or 20s. One 7 year old and my 5.5 year old are affected in some way, the SAME way, a RARE way, as 1 other child at our local children’s hospital and 2 known adults “AT the NIH”- not a location for the healthy.

If we choose “best case scenario”, 7 is just under the 1/3 mark of a lifetime with one of these diseases. And if it’s not…

I bought them roller skates. They’re uncoordinated; they have low stamina/exercise tolerance. And a close relative asked “Why would you buy them roller skates?” They are likely to develop seizures and regress cognitively & physically. But they don’t have them yet.

When she asked “why”, I realized again how little others understand of this life. They watch. They try to support. They have absolutely no clue whatever.

I see my 7 year old and think: if he understood, what would he want to do while still able? What “fun” would he want, should he want? If he knew what he could wish for before it’s beyond his capacity to wish, to accomplish?

When I was a kid, my Dad was in the Army reserves. 2 weeks every summer he went to a base for “active duty” & always brought back something for each of us. One summer that ‘something’ was roller skates. I still remember the feel, the fun, the risk of life & limb at the top of our treacherous driveway…

That experience is something I want for him. Sure, roller skating will be work for him, and for her. But practice will bring success and success will bring fun. And “FUN” is the bucket list of childhood.

Why? FUN

Category:

"the Ugly", Family, Judgement, kids, Medicine, Memories, Preemie, Special Needs, the Future, Trach, Twins

Neighborview

If you were my neighbor, you might see my weed-filled yard & think a lazy person lives here.

You would have no idea that I spend each day from 6:30am until 1am the next day doing medical assessments, treatments & caring for my children and home behind the windows you cannot see through.

If you were my neighbor, you might think I dislike outside time for my kids.

You would have no idea the number of treatments necessary to keep my kids stable requires a lot of time indoors. You would have no idea that my kids cannot tolerate temperatures over 70 degrees or have allergic reactions to tree pollen with direct access to their lungs through their trachs.

If you were my neighbor, you might think I yell too often at my kids.

You would not remember that most often you hear NOTHING from our house because we are singing, dancing, playing, reading, loving each other in our own quiet way behind closed doors.

If you were my neighbor, you might think I didn’t like other people and that something is wrong with a home that is always closed up tight.

You have no idea the temperature sensitivity that requires the balance only AC & low heat can provide. You wouldn’t know the smoke wafting from the neighbor’s constant firepit burning that brings the lovely smell into your home day & night, comes with smoke that can harm my kids’ lungs.

If you were my neighbor you might think I have a wild social/ sex life with different men coming in at late hours several nights/ week.

I’ll admit, one guy was gorgeous and I’d greet him with “Thank you” and immediately head to bed after he arrived… But he was a nurse. He watched my kids while I got to sleep outside the room of beeps & compressors & breathing treatments & tube-feeding 2-3x/week. You may notice, he has left us- taken another job with less pay, but benefits he needs for he & his family.

If you were my neighbor you might think I lie around all day because you see the nurse who comes as a “luxury” that allows me “insurance-paid” time off.

My kids require medical intervention or clinical assessment 168 hours/week. I currently have 29 hours of nursing a week. Hardly time to get caught up on laundry & vacuuming or grocery shopping with the doctor appointments weekly.

If you are our neighbor, or a specialist whom we see to help us navigate health challenges, you might think our life is limited or lacks joy.

And there you could not be more wrong. Each morning we awaken thankful to count us all alive; happy to have another day to be with each other. We sing our good mornings and our good nights. We face the medical challenges as an aside to our living with joy in each accomplishment. Each day I look with wonder at my children- at all they have overcome, at the fights they still wage, at the strength they display. I celebrate the 3/4Lpm of oxygen versus the 1L. I celebrate my ex-27 week, 800g preemie as she pulls a book from the shelf and reads aloud to her brother & sister. I appreciate the giggles, the smiles, the sibling quarrels. We live a happy & joyous life- even as we battle.

Judge not.

Category:

"the Ugly", Community, Environmental Challenges, Family, Judgement, Memories, Preemie, Special Needs, Trach, Twins

Truth Hurts

Today I told my kids the truth. An ugly truth. A truth that as the words flew from my over-tired, fed-up, beat-down mouth, I wanted to un-say. A hundred times your children ask- the same things, over & over, about family they miss. And the only truth, is a horrible truth, an ugly & dark & hurtful truth.

It is not my truth, nor a truth held true in our view, but a truth to one day face.And I hate myself for speaking it aloud.

Category:

"the Ugly", adoption, Community, Family, foster children, Judgement, kids, Preemie, Special Needs, Trach

TMI GI

OK. Most of you know both acronyms but let me open with a warning: GI = Gastro-Intestinal  for those who don’t know…

Why do I hate GI? Because it is the ONE specialty we see where everything boils down to “MY fault”. Regardless of what unknown family history or yet undetected medical condition that adds to the current picture: GI function is largely seen as based on what is put in. And I am the gatekeeper of all that is “put in”…

They see neurology, pulmonary, ENT, opthalmology, have seen cardiology and complex care. SO many of the conditions for which my kids are seen are directly related to being bathed in the brine of an unhealthy womb, their issues relating back to prematurity [27 or 33 weeks] and being born with cocaine in their systems. These issues are those over which I had NO control, share no blame.

But: GI/nutrition? I make the food. I GIVE the food. I decide what is bought at the grocery or abroad for my kids… This responsibility gives me all sorts of culpability for the events of the stomach and colon follow-thru.

Each day I battle to coerce my children to ingest enough calories to GAIN weight. When they stagnate, it is my blunder. If they lose, the blame is mine. When they drop off the growth curve, I have failed at one of the most essential functions of parenthood: nourishing a child.

In addition to the “feeding wars”, I coach at least a couple of my children through the “delivery” of their daily BM. “Push!” I encourage. “Breathe. Wait a minute. Then push again.” Pause. “Another minute & push again.”… “Relax for 2 more minutes and you will be done.” “Just 4 more pushes.” How the HELL did daily bowel function become the thing of “labor & delivery”? In my heart & mind, I only ever really dreamed of uttering this coaching at the delivery of my grandchildren, alongside my son- or daughter-in-law if my daughters choose to include me…

6 hours of direct feeding, a half hour of “delivery”… my day is filled with “guts & butts” in a way I never fathomed at the onset of parenting. And that it is this convoluted at the ages of 6, 6 & 4.5 years old…

Docs suggest medical interventions, from medications to stimulants to surgery, but voice mostly that these things are “urgent”, “need rapid correction”. They state the restricted diet is unnecessary but agree they cannot argue when vomiting and diarrhea are no longer a problem. They note that our way of eating contains “significant fiber” but that it is “ineffective” in supporting a couple of my children to have more normal bowel function. ONE of our providers has gonesofar as to state that a “GTube placement in a child this age is just a sign of parents ‘not doing the work’” of feeding their child well enough to gain & grow. Nearly every food item my kids eat is prepared by my hands, so few items can be store bought to meet the needs of SCD. It is no wonder I feel the burden of guilt.

We have worked with skilled & caring GI professionals throughout my kids’ lives but not one has been effective in lifting the weight of blame off my shoulders. Not one has been able to relieve my anxiety of returning to their clinic for another visit to record the lack of progress for my children. Few even think to commend the daily effort. GI is the black mark on our “complex medical progress report”- and it’s been added to our quarterly rotation. <SIGH>

 

Category:

"the Ugly", Feeding, Judgement, Preemie, Special Needs, Trach, Twins

Trach Parenting

This week in one of the online tracheostomy support groups, a person wrote: “I have never had nursing and I would never want it – I gave up work to stay home …… my [child] is my responsibility no-one else’s. Why more mother’s can’t be mothers baffles me.” I would never take on this mother within the group because I believe we do not ever KNOW a person’s situation – so blanket judgements never work. Half our situation is the physical, objective facts of the setting in which we live, the other part is the subjective: how we respond to that, given our current reserve & capacity, and that changes day-to-day for everyone.

I can tell you why I have nursing by giving you a sample from yesterday:

I have 3 children aged 4 & 5 years old. Both 5 year old children [boy/girl twins] have trachs and have had them since infancy because of airway obstruction, due to repeat & prolonged intubation. My son currently is unable to maintain oxygen saturation levels without significant work of breathing [40-60 breaths per minute versus normal at half that]. Because of this, he requires oxygen 24/7.

Yesterday, during play, I went to the kitchen to refill my coffee mug. My kitchen is about 30 feet from the playroom in front of the house. FORTUNATELY, I had nursing yesterday so I could leave the room. While I was pouring my coffee, my son stood up and walked 3 feet to the bookshelf, catching his oxygen tubing on a chair or other toy. The tug on his oxygen tubing removed his trach from his throat. He said: “my trach” to the nurse & went into respiratory distress- turning bluish, panting in air through the stoma, panicking.

The nurse yelled to me as she crossed the 12 feet between she & him. She lifted him into his crib and quickly replaced the trach. I grabbed the oximeter to check his saturation levels and he was climbing to 96 as we got it placed on him. We waited 10 minutes and replaced his trach with a clean one, noting swelling around the stoma due to the trauma of it being removed by a tug earlier.

Had I been alone, and tried to get a coffee refill, Tav would not have had as easy a recovery. Every second the trach is out, the stoma swells. His voice is quiet even with an HME or Passy Muir Valve on. I NEVER would have heard him. I could have LOST him over a simple thing like a coffee refill.

“Mothering” is the love & care & safe & clean environment I provide. Add to that the level of medical care, assessment, intervention & emergency medical treatment that I provide and you have a typical day- even WITH the support of nurses. I NEED nurses to help with the medical & safety piece. Not because I am failing at “mothering my own child”- but because I am mothering my children appropriately to their level of need.

Category:

"the Ugly", Judgement, kids, Medicine, Nursing, Special Needs, Trach, Twins

S4B

Remember when you were 6 months into your first career? Did you feel you knew everything you could ever learn about your chosen field? Did you vocally attack people with significantly MORE experience than you- over stupid stuff like an oxygen tank not being fully closed ONE time you checked it?? This is the stuff I am dealing with with the newset nurse to join our homecare team.

A plethora of examples could be shared- like the above verbal “reprimand” of another nurse– the shift before she opened the oxygen tank herself, but forgot to attach it to my son’s trach, or TURN THE LITER FLOW ON! And when I discovered the error? A defensive: “Oh. I opened the tank.” How exactly does that meet my child’s needs?

This morning as I began to tell her about my experience last weekend with a significant heartrate drop, paired with oxygen saturation drop, she immediately went into “school marm” voice and told me I should “try repositioning him. It’s always worked for me so he has never dropped like that.” *pushed jaw closed with hand* before I replied that I was not ASKING for “help” about a situation, I was letting her KNOW what I experienced/observed. And to further clarify, I let her know that I am actually quite skilled in the care of my own children and she need not correct me when I am attempting to give her information about significant health events for my children.

I appreciate her feeling confident enough to help with my kids, but I am now leaning toward being put off by her over-confidence and inflated esteem. She has been here WEEKS and has no trach experience other than my children- frankly, her only other nursing experience is with a child with a GTube only- and her in-school clinicals. I am not sure I am going to be able to tolerate more from her. Home nursing is a blessing AND a curse. Some days more accursed than others. *SIGH*

Category:

"the Ugly", Judgement, Medicine, Nurse, Preemie, Special Needs, Trach

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