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.
Last month, at the beginning of the month, I went to a pulmonary appointment for my youngest. Keva has documented obstructive and central apnea, confirmed on 4 separate studies. These studies were done at a different hospital than we use now so it took MONTHS for them to get the data at our new hospital [down the road]. Basically, the bottom line, is that it took my discovering that it was a problem for the two hospitals to share data electronically because they use different computer platforms for collecting & analyzing data. I had to call the original sleep study group and get them to send the data on pages via fax in order to share the data across hospitals.
After finally getting the data shared, still they want Keva to get another sleep study at their site to look at whether her central apnea is: 1. caused by her obstructive apnea and 2. manageable with BiPAP or not. An opinion from the ENT is that he wants to see a complete baseline study first and then a 2nd study to see if BiPAP will work… like I have all the time in the world to run willy-nilly to sleep study after sleep study. And, to add “fun” to the mix, this new hospital has 20 beds/night for sleep studies [the old one had 2], and they have informed me it takes an average of 2-3 months to get one scheduled. WTF??? If that’s for a “normal” patient, how the heck long will it take for my family with 2 trachees to schedule nursing coverage for??
In addition to the above, our pulmonary visit for the trachees last Friday resulted in yet another verbal order for sleep studies to be performed- an urgent one for Tavish who has been de-saturating every night since early February, and a baseline for Adrien. The complication is that we go to a place where everyone is so “specialized” there are docs who only deal with sleep study parameters and orders. We have to get in to see one of these “specialists” before we can schedule a study for the masses according to a hospital policy. Scheduling for multiple kids with this group is like passing a bill in congress, taking nearly as long as the normal “route to schedule” , thereby backing the 2-3 month wait for an appointment up another 1-2 months. 6 months to schedule a sleep study for a child who is desaturating every night without developing an illness, losing weight again after the fight to gain and showing some indication of progressing lung disease even while awake… it is making me insane to consider it.
If I had my own degree in pulmonary medicine, perhaps I could help better coordinate this team effort.
So, today I have this appointment with our ORL- great, amazing surgeon. He’s been helpful throughout my whole experience with my twins and their trachs, has assessed my youngest several times with regard to her noisy breathing, obstructive apnea, central apnea. So when he tells me my questions about her continuing central apnea and what we should plan to do next are too complex to discuss via e-mail – a common way for us to have communicated in the past – I gassed up the car and went in to see him.
When I had e-mailed him last week about the sudden increase in oxygen need of my trached son, asking if he thought it might be that his trach was too short- and how would he assess it, I got the same response. I decided to take my son along with me as well. Today we drove 90 minutes in traffic for a 45 minute journey to get there on time. We waited an hour in the exam room for him to be available. Then, 15 minutes later we are saying good bye after he says we should re-do a sleep study without intervention (no CPAP nor BiPAP) for my daughter, before we do another study with intervention if they decide it might be necessary from the first sleep study- ahm, yeah, it takes nearly 2 weeks to get results, we’re talking a month likely for both studies. And, well, if Tav is voicing past the trach, then he is getting air well, so it must be a lung problem- go see pulmo. “Bye.”
Am I missing something? We reviewed exactly the information shared in the e-mails I wrote. “Do a sleep study at baseline without intervention.” “Voicing = trach size fine.” Is there something complex about that information? Am I missing something?