The tapestry of the life of a medically complex family

Archive for the ‘Feeding’ Category

GERD is SO Much Fun

After a late morning albuterol/ ipratropium round for wheezing break-through, my kids began playing ‘clinic’ with the teddy bears from their beds.

As they prep my son’s bear for a ‘procedure’, my youngest picks him up, places him close to her nose & SNIFFFFFS deeply. “He smells TERRIBLE!” she says before stuffing him under her sister’s nose & asking her to smell.

SNIFFFFFF goes my older daughter. “Ew! This bear smells GROSS! Smell it Momma!”

As she hands me the bear, I realize the leg is moist. Keeping it a good distance from my nose, I sniff lightly.

UGH!!! Vomit. The bear’s leg smells like VOMIT.

Thanks, GERD & overnight GTube feeds. Thanks very much.

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Delayed Gastric Emptying?

These are the things that break a Momma’s heart
The struggle continues though you’ve fought hard from the start
Evidence of aspirate, the world is turning blue,
A good night for a couple, we won’t give up on you

Then appointments back up snack schedule, dinner try falls through,
We start the feed so very late but back-up does ensue

5 hours past the last small bite, we try the feed again
Although the first half down the sink, the second part gets in.

We learn to thank for every small victory with you
The news of overnight that passed: no trach nor pillow blue.

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8 hours

8 more hours until a second Gastrostomy tube is placed in my 6 year old son’s stomach. Yes, there’s an hour of nebs and I would like to shower, then the hour long drive between us & the hospital where they will induce anesthesia and perform the surgery. Yet I’m still up, not yet near sleep, prepping & attempting to relax enough for sleep.
2 years ago this week, we removed his first GTube – 6 weeks shy of 4 full years. It was placed after 8 months of naso-gastric tube feeding, when he weighed about 8 or 9 pounds, 4 times his birth weight. By the time I removed it, he had gained another 20 pounds, grown feet taller, learned to eat enough calories by mouth to gain weight & grow. It was causing regular, intense pain- our surgeon believes it may have been rubbing against a rib in its old location.
With all that, his feeding, the pain, the fact it would need moving regardless if we had chosen to leave it, none of that eases the burden on my shoulders for not being able to avoid this re-placement. And there is no avoiding it. In a month of not pushing, of not fighting, of not sacrificing every minute free of other medical procedures, he has lost 4.5 pounds. By limiting pushing feeding to “only” four hours every day, he has lost more than 10% of his body weight. This tool is needed as we fight to get it back.

Out & About

Going out in the community is a rare experience for my kids. Throughout fall, winter & early spring the prevalence of respiratory viruses keeps us homebound. Summer heat & humidity fatigues my kids in a way that compromises them for hours afterward so the cost of being out typically outweighs the fun.

Today was a “cooler” day, low humidity, temps in the low-mid 70s. It was a day which might allow Tav & Keva some air & sun, while still being safe for them. We went to 2 medical appointments, then rushed home for a nurse I later remembered wasn’t coming. We ate a snack then ran an errand before going into Our town’s mill area for a walk along the river.

The kids enjoyed being out but were quickly fatigued. Tavish’s heartrate stayed in the 140s much of the time we were moving around. His fatigue was evident but he fought through, excited to be out & about. Keva hopped around and walked around for about 15 minutes before losing her balance & scraping her knee. She climbed into my lab for the next 20 minutes while Adrien & Tav looked down the storm drains and walked back & forth. Tav took a few falls, losing his balance with the oxygen tank, and sat frequently for short rests.

The outing was a reminder of just how limited my kids are in stamina. When we stopped & checked sats, Tav was sitting between 87 & 89 while on oxygen. Adrien was doing the best of the 3 as she dripped in sweat but had the energy to twirl. Keva’s fatigue had already brought on her daily headache & tiredness complaints. I love to try to do things but days like today remind me of why we limit our outings and do many things with kids seated in strollers.

I love my kids so much. I give them opportunities to rest while out. But I know to keep these smiles, I’ve gotta keep the outings break-filled & brief.

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A Long & Winding Month

June is here & has already begun to close in as one of the busiest months for getting things done. At the end of the week, we go to a new hospital and the Mitochondrial Disease/Metabolism Clinic for one kid- although they want me to bring along records for my youngest. Last month, about 3 weeks ago, a request for “complete medical records” was made. Today I received records for the ones to be brought along- not one pulmonology note, not one neurology not, not one orthopedist note, none from cardiology… Complete? Not exactly. So tomorrow will be spent calling the medical records department and following up on this & the other request- while I do not have a nurse along for the ride.

The appointment Friday will be tough. I am trying to write a summary list of strengths and concerns. I still feel pretty ambivalent about whether this is truly what we are seeing. At least it is also metabolism- cuz this kid has got some SERIOUS ability to burn calories! Maybe they will have a suggestion that outweighs the GTube recommendation of the GI & Cardiology- maybe they won’t but it’s worth an ask.

The next scheduled appointment is the day when all 3 kids are scheduled to go under anesthesia and have their airways looked at. June 18th will be a crazy-busy day and I have yet to line up hands to hold & rock kiddos pre- & post-op. The appointment may be bound with an in-patient stay overnight- making this a crazy 2-day extravaganza. At least it is at a hospital I 100% trust with the care of my kids so it won’t be as stressful being in 2 rooms if all 3 need to stay.

Closing out the month will be an ACTUAL pulmonary appointment. We have been bundling these with the Complex Care appointments and not really getting much time sometimes. Our pulmo has a great reputation, is easy to talk to and has significant creative ideas on how to treat my kids- but is SO busy taking care of everyone complex in our medical mecca that he is hard to get together with outside his clinic. I will be glad when the month is over and am hopeful the information we get or changes we make will help my kids thrive throughout the rest of summer- & beyond.

How it is Done

The number one question I get from others: “How do you do it?” If you want to know the specifics, you can read about one of the typical days here. But most people are really asking “How do you get ALL of it done? How do you keep going, day in & day out? Where do you get the strength to get up each morning and ‘have at it’?”

My standard short answer is: I just DO. And sometimes not very well… but when it’s a person who really cares, who may have the same things they need to do every day, who might be feeling like they cannot keep on “doing”, I try to give it more thought. Here’s how I think I get through each day:

I am aware of the “big picture” but I work to not get bogged down by the overwhelming list of things, start to “finish”, of every day. I try not to look at everything ahead all of the time- if I do it will quickly overwhelm me. I try to keep really focused on getting the next thing done. I try to remember I am only one person, I can do one thing at a time. I am bad at cutting myself some slack but I have worked to get better at it.

Probably, most importantly, I try to spend part of every day ‘being present’ – noticing what my child or children are doing. Remembering that they have each other for the future. Really watching & experiencing the wonders they really are- looking at how far they have come, the love they show for each other, caring for others. It helps to remind me that, altho I sometimes have a bad day/ horrible parenting moment, my kids really seem pretty ok- sometimes bratty or crazy in their own rite- but then they show me who we really are as a family. Sometimes, when I ready to leave for the grocery store and the twins hug me & say I love you, they call for their sister who they give the same. Something about your 4yo blowing kisses to her sibs to say goodbye, waving & yelling “I LOOOOOVE YOU!” back thru the door- it just lifts you. Days are harder when I don’t have the time to ‘notice’- and sometimes there are lots of those. There is a great blog post about parenting. It’s not exactly about my experiences, but it’s a good reminder to all parents- a quick summary is that we will look back & be happy to have parented, even if not every moment going through feels all that wonderful. (Huffington has that post here)

I always close EVERY day singing “Love You Forever”, 1-to-1 with each kid. And they sing back in their own way- they actually have become good at it. Its my way of telling them, no matter what, at the end of the day, you are the love in my heart- and you always will be.

And whenever I need a reminder of what it’s all about, why it is that I do what I do, I only need look here:

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