The tapestry of the life of a medically complex family

Archive for the ‘“the Ugly”’ Category

10 Reasons Complex Medical Needs Parents DON’T Drink Wine- But SHOULD

10. If you drink too much you could get a headache & not be able to do the next 11 neb medication series…

9. Frankly, if you TRY to drink “too much” you will only pass out as you take a sip of your second glass- exhaustion will force you into a deep slumber & you will SURELY miss dinner.

8. Your “normal” child is prone to sudden onset severe asthma & she will begin to wheeze when you begin to pour…

7. The corkscrew has been repurposed to open medication ampules and it’s too much bother to clean.

6. The oximeters have “relax-dar” – if you so much as move the milk over to consider taking out the Riesling, they will inevitably alarm repeatedly until repositioned on both twins.

5. The next neb treatment is actually due now…

4. It’s time to blend, heat, set-up & begin the overnight feed so who has time to search for a back-up corkscrew?!?

3. Have you ever been to a home with multiples and had all of the kids well at the same time??

2. BEEP!! BEEP!! ‘No food out’- what the hell??? Didn’t I just flush the GTube 5 seconds ago???

And the number 1 reason parents of complex medical needs’ kids don’t drink wine:

1. He’s making that cough again. THAT cough. That cough that indicates tonight or tomorrow will be the date of the next ER visit.

The Day Before, Year 2

This year has been filled with sorrow, joy, health, illness, triumph, failure. It has been a year of growth, of moving homestead & continuing to mourn. It has been a terrific year and a difficult year. And it has been a year that I have thought about you, Shiya and Ayrie each & every day. Sometimes with sadness, sometimes with laughter, sometimes because a picture of your family that is new to me comes across my “news feed”. The twins still say goodnight to him each time they regard the night sky. My youngest still has conversations with him “in my heart”, she says. Know we are thinking of you as you prepare to remember him on his sixth birthday & I get carrots ready to shred for our cake in his memory. Hugs & love & this reminder:

Published a year ago today:

SO many posts are running through my head but the one I need to write TODAY is this one- because tomorrow I can’t say all that needs to be said today.

Today is Tuesday. Today is just another day. Today is the day before the 5th birthday of a child of a wonderful friend of mine. Today should be a day for last minute preparations, baking, decorating, stuffing gift bags… but it’s not. Because my friend’s child had a complex medical condition and he died last fall. He is dead. People can say the ugly words religions use to describe this, but saying “angel”, “heaven”, “whole again”, “in the light”, NONE of these things fill the emptiness in my friend’s arms, the ache in her heart, the agony she is experiencing as tomorrow approaches. Tomorrow she faces another “first” in the list of events after the death of a child- his first birthday on which he will not age, he will not enjoy candles and cake with she and his younger brother, he will not… anything. He no longer exists in the physical realm we experience on Earth. It SUCKS. And I am angry at the Universe that so many of my friends have to,  or will, experience this pain.

I want to remind her that tomorrow is no different- it is not special in its difference from each and every day- every painful day without her son. It is holding her now in a state of terror, fear that tomorrow will bring the collapse she has spent all these months fighting. That does not make tomorrow more special than any day this week, or last week, or last month, or Christmas or any other day. Tomorrow will come, and the searing pain and agony of his loss will be great, but not as great as that first day, that first moment of knowing and not being able to bring him back. I want her to know that she survived the worst on that day, that she has the strength to face and get through tomorrow because she has already survived the worst. She has already committed to continuing, to thriving, to supporting her other son to thrive, as the son who has died would want. She is so strong- although she is feeling as if a drop of water, a shift in the breeze, might be all it takes to break her. She is strong and she doesn’t need to be- because we are here to help hold her when the journey knocks her down.

I want her to know, and to feel, that she is loved and supported and right and just on her trail through the perils of the loss of a child. What I want to do is go to her; to bring cake, to bring candles, to bring wine, and to sit and hold hands and hug and cry and laugh and remember the beacon her child shared with the world for his short 4.5 years. I want to celebrate the gift that was her child. I want her agony to soothe, her memories of joy to once again be strong. I want some of the moments she experiences to be filled with peace.

Please know we love you and will be celebrating the life of our special friend tomorrow.

Basic Skills

Sadly enough, so many of the nurses sent to interview or train here just don’t have them. The “nurse” scheduled to come tonight cannot assess lung sounds, determine if my kids secretions are copious or dry to the level of needing intervention; and when TOLD to intervene, she stands & waits for direction. There is a level of ineptitude that I have come to expect, but this bungling person has been “trying” to gain a skill for more than a month now.

I know that it’s time to let her go but, in addition to her lack of skilled nursing ability, she has no filter on sharing every minute detail of her life. Because of this, I know her family business has failed, her husband is only working part-time and she relies on the income from my home to keep a roof over their heads. In today’s economy, it is hard to discount the very real role this job could have on a person’s ability to avoid homelessness. This responsibility is far beyond what I signed up for when I accepted nursing support to maintain my kids at home.

Decline

Decline is a word I hate to use to describe any health behavior in my children. It is a terrifying word implying “active change for the worse”. It is the word I am now using to describe my son’s respiratory status- and I want a different word, a different experience. I am DONE with “decline”- I will settle for “plateau”… can anyone give me a “plateau”?

Since last summer, Tavi has gone from being mostly clear, rarely suctioned, rarely secretions thickening in the trach to a kid who needs suction almost daily and does worse with any level of activity- even when cool. He regularly needs saline nebs every 2 hours when off his trach mist color- and sometimes needs them in addition to the mist. He has declined throughout the winter to having more secretions outside the typical activities where I saw them previously. Outdoor temps have not even begun to rise and he fatigues regularly during low intensity Physical Therapy sessions in the cool playroom.

Since September, Tavi has required a saline neb during each PT session. Since early February he has required oxygen- typically 2L every night, but sometimes as much as 4L. For 4yrs 11mos of life with a trach, Tavish required no oxygen on sleeping unless he was actively ill. He has yet to develop an active illness since the oxygen requirement began. As we head to the sleep pulmonologist appointment next week, I fell like I need to get familiar with forming this word in my mouth as part of the description. HOPING it is just a temporary problem. Tav’s sleep study cannot come quickly enough for me.

The Day Before

SO many posts are running through my head but the one I need to write TODAY is this one- because tomorrow I can’t say all that needs to be said today.

Today is Tuesday. Today is just another day. Today is the day before the 5th birthday of a child of a wonderful friend of mine. Today should be a day for last minute preparations, baking, decorating, stuffing gift bags… but it’s not. Because my friend’s child had a complex medical condition and he died last fall. He is dead. People can say the ugly words religions use to describe this, but saying “angel”, “heaven”, “whole again”, “in the light”, NONE of these things fill the emptiness in my friend’s arms, the ache in her heart, the agony she is experiencing as tomorrow approaches. Tomorrow she faces another “first” in the list of events after the death of a child- his first birthday on which he will not age, he will not enjoy candles and cake with she and his younger brother, he will not… anything. He no longer exists in the physical realm we experience on Earth. It SUCKS. And I am angry at the Universe that so many of my friends have to,  or will, experience this pain.

I want to remind her that tomorrow is no different- it is not special in its difference from each and every day- every painful day without her son. It is holding her now in a state of terror, fear that tomorrow will bring the collapse she has spent all these months fighting. That does not make tomorrow more special than any day this week, or last week, or last month, or Christmas or any other day. Tomorrow will come, and the searing pain and agony of his loss will be great, but not as great as that first day, that first moment of knowing and not being able to bring him back. I want her to know that she survived the worst on that day, that she has the strength to face and get through tomorrow because she has already survived the worst. She has already committed to continuing, to thriving, to supporting her other son to thrive, as the son who has died would want. She is so strong- although she is feeling as if a drop of water, a shift in the breeze, might be all it takes to break her. She is strong and she doesn’t need to be- because we are here to help hold her when the journey knocks her down.

I want her to know, and to feel, that she is loved and supported and right and just on her trail through the perils of the loss of a child. What I want to do is go to her; to bring cake, to bring candles, to bring wine, and to sit and hold hands and hug and cry and laugh and remember the beacon her child shared with the world for his short 4.5 years. I want to celebrate the gift that was her child. I want her agony to soothe, her memories of joy to once again be strong. I want some of the moments she experiences to be filled with peace. Please know we love you and will be celebrating the life of our special friend tomorrow.

Reconstruction with Rib Graft, Part 3

The nurses at the Eye & Ear are wonderful and caring. They worked hard to support my kids through the pain and discomfort of their recovery from airway reconstruction. They checked in on us frequently and, between the two beds, they were kept busy with IV adjusting or replacement and drain/wound care.

While they were terrific and friendly, my children responded with terror at each new person who walked through the door. They crawled to the side of their cribs where I was closest and tears flowed freely. They would wriggle frantically, crying soundlessly, trying to climb through the bars into my arms. I spent nearly every waking moment seated between their cribs, holding and rocking one or both of them. For each neb or procedure, they would sit in their crib, reaching immediately back to me as soon as it was over. After 3 days of fielding questions about whether they were “always this difficult” from a support staff member at the hospital, my insurance company approved skilled visits by the nurses who worked in my home. The relief in having that second set of familiar hands, a person who could spell me so I could SHOWER or eat a meal- which I had to do outside the room or during their sleep because Trachgirl had not been cleared for anything by mouth since she failed her swallow.

Trachboy’s first bronk post-op got the “thumbs up, A-ok” seal of approval and the stent was removed. It had been a week since we had tried anything by mouth for him so I worked at re-introducing the bottle in a chair outside our room while a nurse spent time with Trachgirl, 3 days into her post-op “fast”. Trachgirl signed milk at least 100 times per day, at the arrival of each person, because her hunger now exceeded her fear. For the next 3 days she signed madly, cried silently, batted eyes at each and every arrival, BEGGING to be given something, anything by mouth. On day 5, after much urging from me, the docs finally ran a blood panel. A resident said her bloodwork was “normal” to which I replied: “Geez. That IS gonna save me some money.” implying the no food option being equal to the food option seemed a “win-win” from my perspective… <sarcasm>

The fellow came in afterward and went over the bloodwork with me, told me about a change in her IV fluid make-up to balance some things out, and talked about putting in an Nasogastric-tube (NG) to give her some nutrition. I agreed to the NG, knowing she would have to be confined to her crib during feeding and that “welcome sleeves” would need to be applied to keep her from reaching her face and pulling the tube out, but hoping that the filling of her belly would help her to heal faster and be happier. When the nurse arrived with the feeding, she put it on a bolus rate and told me not to worry about it being too fast- after all, she was starving hungry and a full belly would only “feel good”. The feed began at about 10:45p, just before shift change, and the nurse left soon thereafter to report-out to the nurse who would be taking over for the night. Trachgirl sat in the middle of her crib looking like a beaten and defeated child: surgical scars and adhesive sutures, NG tube taped in a trail across her face & head, “welcome sleeve” arm braces to prevent her from getting her hands on her new “feed equipment”. She leaned back on the inclined crib surface and at about 10 after the hour, she began to vomit.

Trachgirl immediately aspirated the formula through the cleft from the stent, at which point she crashed, sats plummeting, alarms sounding, nurse running to our room. As her sats dipped to 68%, Trachgirl blacked out into the pool of her own vomit and I continued suctioning while the nurse ran to the nurse station to make the STAT call for the doc to get to the floor. Her heart rate dipped low, the docs arrived and re-assessed her as she returned to more stability. After a consult with our ENT, the resident removed the NG, radiology came to the bedside for a lung xray, and we waited for her EKG to be completed to be sure her heart rhythm had returned to normal. Sleep that night was a non-option for me. I spent the rest of the night seated next to her crib, holding her upright in my lap.