I meet the nurse & interview
Decide if training to ensue
I schedule training then I wait
Anxious breathing won’t abate
I train the skills, ID the parts,
Teach assessment, talk of heart
I take deep breaths and let them try
Too oft attempts will go awry
The hours are lost, my children pay,
Its rare when nurses last and stay
I give up comfort, sleep, career,
It seems no else can do it here
Keep standards high. I wonder lot:
Home nursing worth it? Think me not.
Ah, the plans we make. One of my goals for the coming year is to write here more often. I love to begin a new year with a beautiful group picture of my smiling kids. I had plans for sledding and lunches with my family & the birth family.
We all know what happens with plans, especially when kids are involved. Add complex medical needs, family gatherings, multiple kids- multiples! Well, some days it’s a wonder that ANYTHING gets done.
No group photo got done until tonight but here’s the reality of my new year’s:
And one who worked SO hard NOT to smile…
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.
Even with our limited personal resources, our family has been thrilled about the opportunity to give back to the hospitals that give my kids such wonderful medical care. We went to a commercial shoot for Boston Children’s Hospital, where my youngest is featured at the close if the TV commercial, as well as appearing in the Boston Globe. It has been thrilling for her.
About 10 days ago, we were able to participate in a photo shoot on the Boston Common for Massachusetts Eye & Ear Infirmary. This hospital performed the life-saving tracheostomy placement for my older daughter & have provided skilled ongoing care & airway/ neck surgeries for each of my 3 youngest. Here is a glimpse at the fun we had that day. We can’t wait to get the pro shots!
I guess traveling this trach journey is complex and busy and adds some limits to our lives on the day-to-day. Many of our docs want us to rush toward decann – I cannot TELL you how many docs have the “Get it out. Get it out. Get it out.” mantra on their letterhead… And, I am in FULL and complete agreement that THIS is our plan- but I am not willing to rush it at any risk.
Currently, my son demonstrates regular difficulty breathing- his resting respiratory rate is in the mid to high 20s, while his sister rates in the teens. Last night, after an afternoon visit by a friend and spending time outside playing [mild/moderate activity bursts…] for less than an hour, he had a very high Respiratory Rate (RR) through dinner and into evening nebs- high 30s/low 40s while seated. At one point he began to look “dark” [his version of blue…], complaining of headache and his sats were hovering in the mid-80s [84-87 bounces] until I began running the hypertonic saline off oxygen. He had just had an albuterol/atrovent duoneb and should have been really “opened up”, but the fatigue of the day caught up with him and he was not moving oxygen efficiently. After nebs, his RR continued to be high, with lower sats than normal on 1L* versus his normal 0.5 … While in bed, even after falling asleep, I continued to get RRs in the 40s while he satted 96% [his norm is 98-100 while on 0.5L oxygen]. After a couple dips and continued high RR, I increased his Liter flow to 1.5L and he finally seemed to rest more comfortably. I am MOST thankful our docs know that Trachboy does not indicate any readiness to have his trach removed at this time.
With regard to Trachgirl, she breathes with a pretty normal rate for age with her trach in place, across all activities. She has higher energy than her brother and sister, but still not nearing typical for her age- and she does show some heat intolerance, although tolerates outdoor temps much better than her brother. She passes the “screening” pressure for the Passy Muir Valve [speaking valve] to be used, without modification, although increased pressure [above limits] was noted while speaking [seated on a bed]. She also once passed a momentary test for simulated capping [capping blocks air into and out of trach & requires a person to breathe through their upper airway]. Because of this, she is the child some docs want on a faster track to decann- altho our surgeon has told us for YEARS she would need more extensive surgery to get there. Our surgeon seems to have agreed to the “team” plan [not including me] of working to fast-track her to a capping trial, without surgery for the collapse at her trach stoma. This type of plan has been my 100% reason to keep our ENT at a separate hospital- because it is out of character for him to “experiment” versus repair…
The data I have? Trachgirl tolerates the PMV for about 45minutes consistently. She regularly has oxygen desaturation during use of her speaking valve, especially if she is moving around playing. She slows down, or sits down, and asks to have it removed- saying she feels like her “stomach is heavy”… I continue to collect the data to share with the team- primarily through nursing notes of time tolerated and events. The docs may be concerned that I am not running with them to make this leap for my child. I guess sometimes they lose focus that: It’s not the jump you have to worry about; it’s the landing.
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* Oxygen flow is defined in its rate: Liters per minute. Tav typically is on 0.5L/0.5Liters per minute of flow, all day every day.
Monday was a busy day that began very early and ended sometime Tuesday. Thankfully our terrific overnight nurse came in on Sunday overnight to be sure the twins got all their meds. He was also able to help kid wrangle during pre-op and recovery so that each of the twins had a familiar adult, while Nana oversaw my youngest. It was a smooth process overall, thanks to skilled and responsive hospital staff and our surgeon. Much of the news was good, some changes with the twins- both have larger trachs- and my youngest has an airway & larynx that now “look great”. My kids are easily amused at the hospital with videos and the food was good so they enjoyed their 36hours there for the most part. I am very thankful my kids are so easy-going with the procedures necessary to assess their medical needs.
Basekamp Laundry Mountain 