When faced with “round-the-clock” nebulized medication scheduling- and NO nursing help- a parent must decide to “Get Up” or “Stay Up”. I’m the parent that goes back & forth on that strategy.
The last few nights, I was in “Get Up” mode. My level of exhaustion from multiple nights & days of this schedule, coupled with oxygen desaturations- often in stereo- led me to choose going to bed at the kids’ bedtime & setting an alarm for “med time”. And last night my youngest alarmed (oxygen saturation below 92) about 45 minutes before med time. That alarm, & the couple that followed, reduced my ‘sleep time’ to about 4 hours. I tried to go back to sleep but didn’t until well after 5am. That left about 2.5 maximum hours for sleep… I’ve been tired much of the day.
Tonight I chose “Stay Up”. While writing this I am starting nebs at slightly less than 6 hours apart & hoping for no more alarms tonight. I hope to stretch sleeping to the “magical” 5 connected hours- wish me luck. See you in the morning. :)
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.
Sometimes life looks bleak and things are over-whelming when reviewed in their entirety. Other days the smile keeps spreading and won’t leave your face. So goes parenthood and this week has become one of the latter types of weeks.
All 3 of my kids have had sleep studies in the past month. My daughter with a trach went first and had a difficult experience with the monitors but a wonderful study in terms of positive data on her sleep-breathing patterns and conditions (as expected). The sleep pulmonologist said her study was “completely normal” and “amazing for a child with her birth & health history”. The day of results was a smile day for sure.
With my youngest daughter, her sleep studies have always shown concerning results. She had her first study in June after she turned one, resulting in emergency scheduling with an ENT & having her tonsils & adenoids removed. A repeat study that summer noted continuing obstructive and central apnea, so a 3rd was scheduled for titrating CPAP just after her second birthday. CPAP seemed effective for a year and then the bags under her eyes returned, warranting another sleep study- whose results of “central apnea” were most concerning of all. Finally got in to see the sleep pulmo specialist with her and he ordered another baseline study. He reviewed her results soon after the study and said the most beautiful words to be heard by a parent: I would not call her pauses “central apnea”. He said they were pauses during her transition from day-time breathing to night-time breathing patterns. He notes there seems to be good recovery and once she makes the transition, she breathes normally until the transition back to more rapid awake breathing. Supposedly, a majority of preschoolers breathes this way so it’s not even just because she was a preemie! HURRAY #2!!!
Last, but not least, was my son with a trach. He has been having such a difficult time maintaining oxygen saturation at night that we did concurrent oral steroids, oral antibiotics [abx] & an inhaled antibiotic during the month before his sleep study to try to bring him back to baseline. As the steroid course took effect, he improved. The oral antibiotic course lasted two weeks and without side effect. The inhaled antibiotic [TOBI] improved his sleep oxygen saturation back to over 95% on almost every night of that month- as opposed to only 2 nights the month before. He had an occasional low oxygen night since the TOBI ended but I was confident going into his sleep study that he was remarkably close to his old baseline. The sleep pulmo set up the study in the ICU and placed a vent at bedside to titrate in the event he had any sign of needing it. And the results: AWESOME study. NO vent. NO desaturations. No unusual sleeping/breathing patterns. The sleep pulmonologist wants us to be sure to treat any desaturation events as a sign of illness that should be treated to keep him at this new baseline.
3 for 3- absolutely amazing!
There is a tightrope. It is the rope I walk each day. It is the path I take to balance the challenge with the celebration, the medicine with the childhood, the angst with the joy. It is a delicate balance, taking concentration, determination & focus. The tightrope is so thin, observers seldom see it; focusing instead on one side of the balance or the other, from their perspective.
When asked to report on my children’s challenges & success, I try to represent the balance, give inquisitors the view they need to do their job most appropriately. With a pulmonologist, you give the data on breathing & response to treatment, sometimes touching on the ability of the “patient” to participate in life’s activities- but not always. With the State adoption stipend division, you focus on the challenges- the tasks above and beyond those of the parent of a “typical” child- one without medical & developmental challenges. You give them the data they need to approve the continuation of the subsistence on which your family relies to access adequate medical care and housing resources.
And then their role changes somewhat. Their role suddenly becomes dual in its nature: suddenly there is a sibling who needs a home and the same stipend approval worker wants to see how your home functions in a way that could support another child. Suddenly they need to see BOTH sides of that tightrope- seeing the celebrations, the childhoods, the joys- without losing sight of the challenges inherent in this balance.
There is a fear growing within me that this view cannot be achieved from their vantage point; that a view of the good that is our life will obscure their understanding of the work it takes to achieve it. I feel as though our house is made of cards and the wind is picking up…
Meds across the Ward:
Pulmicort, Hypertonic Saline 5% (blend of 3% & 7%), Albuterol PRN, Combi nebs PRN, Miralax, Prevacid, Singulair. New orders (T) from sleep Doc for Cefprozil (14 days), TOBI nebs (28 days) AND 2mg/k Orapred ended Monday.
TRACHS: Tav 3.5 Neo [Mon]; Adrien 4.0 Neo Shiley [Mon]
Scheduled nebs per day: 12
Average nebs per day (past week): 15
Nurse shifts (last week): Overnight: 2; Day: 5; Evening: 3; Full days alone: 2
Mist Compressors: 2
Neb machines: 3
Suction machines: 2 portable
Oxygen tanks: Liquid: 2 lge., 80% Tav, 60% Adrien; 6 E tanks; 3 empty E tanks; 3 empty smallest tanks; 2 back-up.
Ambu bags: 2, 1 in nursery & 1 for travel
Back up trachs, suction catheter, HME locations: “nursery”, “study” & “kitchen”
Medical Cribs with climb guard toppers: 2
Doctor appointments scheduled this week: 1, on a day with no nursing. Likelihood of cancellation: 98%
Nights requiring oxygen: 1 Tav ; 0 Adrien
I know this is not the end of the world. I know this is likely a temporary set-back in the respiratory life of the Basekamp Airway Clinic. I know I was expecting to hear these words at some point with one of my children. I am working to come to grips with a possibility that it could be 2 of my young children.
We had an appointment with a sleep doc at our children’s hospital. I was hoping for a good appointment, something worth the extra travel, wear & tear on my car and my kids… The doc was GREAT. He took a complete and detailed history of each of my children. He asked questions about the treatments we used in the past, the ones we do now, their scheduling and how effective we feel that they are. He used all this information to work out a plan for each of my children with regard to upcoming sleep studies.
There was some good news: neither Keva nor Adrien will need to be admitted to the Intermediate unit for their studies. They were sent for chest x-rays so he could assess inflammation & scarring in their airways & lungs. Both girls will have baseline sleep studies, with no breathing intervention. This will mean a need for an additional study for Keva if he feels like her apnea needs a BiPAP trial, but means easier preparation and scheduling for the initial study. It also means having Adrien attempt sleep without mist for an overnight so they can get good data about oxygen and co2 levels- which is unnerving, but may provide valuable data as we move forward in her life with a trach for the next few years.
He said many hopeful things about central apnea- that based on its timing during sleep, it could be bound to natural breathing transitions [awake to asleep] and may be low enough intensity not to require intervention. This description gave me hope we might not be talking mechanical ventilation for my youngest! Cross your fingers!
Back to the title here though, you note I have yet to bring up Tavish… The sleep doc is pretty sure the current oxygen dependence is an indicator that we may be looking at a need for mechanical ventilation of some kind. He said the options could be either BiPAP delivered to the trach – or a ventilator. I was afraid of this, but I was not prepared for this discussion… The doc reviewed Tav’s x-ray from the beginning of March. He was happy with the absence of scarring throughout Tav’s lungs- common across preemies- but was not happy with the level of inflammation of his airways. His plan is to treat Tavish with an arsenal of oral steroids, oral antibiotics, and a month of inhaled antibiotics. He wants to check in then to see where Tav’s respiratory status is, then schedule a sleep study most appropriate to then.
The doc still feels the results will put Tavish on mechanical ventilation at night when we have study results, but he’s hoping a month’s intervention will minimize the settings. I am completely discouraged about this possibility. The doc feels like this support might give Tav the energy to be more well, to be stronger during the day, to gain weight again. He also feels that the support will be temporary, something we wean… but it still feels huge to me.