Tuesday, November 20, 2007

November medical news

Much has happened in the last two weeks on the medical front so a quick update on each of the disciplines.

Reu will get his new BAHA hearing aid today so that's a big communication milestone for us.

Despite his heart rate dipping momentarily into the 40s when he's asleep (it should be 80-120bpm), the tachys and bradys seem to have stabilised. At Friday's visit to Dr Tessler standing in for Dr De Oliviera, he was confident that it wasn't an issue and that, if it weren't for the Pulsoximiter, we wouldn't be aware of the momentary lapse when he's in a deep sleep, something which can happen to all of us. The beta blocker Propranonol which acts to suppress his adrenelin and thus his heart rate (and thereby avoiding the tachycardias of 228bpm), is being weened, although he's still on Lasix a diuretic and Sodium Chloride to counter the effects of the liquid loss. Off to see Dr De Oliviera again today.

Occupational Therapy: Oral feeding
Yesterday's visit to OT at Children's gave Reu his first taste of pureed squash, his first oral feed. He seemed to like the taste OK despite a compromised sense of taste brought on by the missing olfactory nerve. We're pleased he didn't gag or aspirate (we couldn't see it coming out of the trach) and we could actually see him swallow a little. He takes most things in his stride, enjoys new experiences and this was one of those. Little steps every day, a finger dip taste of puree when we start the feeds and that'll be it. Need to catch up with MK whose son Lucas is the same age and also also begun oral feeding as her plan of action seemed more structured. We'll need to decide what works best with our insurance as to whether to continue oral feeding at Children's or via the regional centre with appointments on a weekly basis. In addition, commencing 26 November also on a weekly basis, Reu will develop specific skills for his hands coordination. He's already pretty good on the hand to mouth, ravishing his hands in his mouth at every opportunity. Our former OT and PTs came along to see Reu whilst we were there, the last time being when we was fresh in trach territory.

General paediatrics
Yesterday's visit to Dr Charlie Golden resulted in us scheduling his next bout of immunisations for December. Reu is now 25" in length and weighs 6k which means he is finally approaching the 5 percentile on the growth charts. Always great to see the compassionate Dr Charlie who continues to be pleased with Reu's progress. As Chief Resident, we worked with Dr Charlie both in the NICU and PICU. Along with Carlos, there have been other terribly sad losses in the PICU in recent days, kids we would pass every day on our way to see Reu. I approached the issue of whether we could sleep when Reu slept on those nights, like tonight, when we have no nurse. He said it wouldn't be wise given Reu's still throwing up some of his feeds despite his prescription for antibiotics which he'll take for several months. When he throws up, he can't audibly cry to let you know and we risk him getting aspiration pneumonia via the trach. So Jason has just now gone to bed after 22hrs up. I wonder how we'll cope when he goes back to work when we're not coping now? Jason functions extremely well on no sleep but can't cope without food, whereas I cope without food but am pathetic without sleep. Something's gotta give.

Up and down, up and down the elevator yesterday trying to get Reu's testosterone shots sorted as October's referral went missing. Making bookings for February, but I'm sincerely hoping it won't be that long to wait especially after reading MK's account of it being a quick prescription and jab to help Lucas. Unbearably frustrating when these referrals go missing and you lose a month. It's so hard to keep track of everything and I hate falling behind.

Physical therapy
A milestone on my birthday last Saturday, I edged Reu onto his stomach on the lawn at the Getty and then, unaided, he raised his head up in prone position and with his eyes open, looking around. 2 sessions of physical therapy last week and our own pilates moves with Reu when we find the time have really helped. It was a huge milestone. He hasn't done it since but we're working on it. He's never been keen on tummy time and I think the Gtube and trach make it a little more difficult anyway. We have physical therapy sessions booked every week at home.

Carrie the PT at home with Reu on the physio ball before the Saturday prone position milestone. As you can see, PT is hard work for Reu

Cranial facial
Appointment booked for 4 December. I guess they'll be looking at the facial muscle and nerves, trying to balance the asymmetry, looking at the dentistry (no signs of teething as yet). I'm not sure to be honest. Despite all the critical medical complexities of CHARGE, I know it's one of the areas that causes great concern because of the social implications of palsy.

As previously reported, Reu did well in his sight test despite the astigmatism. However, I'd like the cranial facial clinic to look at the spastic entropion, yes another issue, which affects his ability to close his right eye when blinking. We use lubricant which also eases the irritation from the eyelashes. Dr Borchert thinks he may grow out of it which of course would be a blessing, otherwise, I wonder if there's a surgical option?

Jason has made about 30 phone calls trying to work out who's going to pay for the RSV Synergis shot. It is beyond maddening, it simply makes you quite mad.

Healthcare company
Still awaiting the transfer from Apria to Lifecare for our medical supplies after the abysmal introduction to the former. It's a matter of insurance and waiting for the mystery letter to arrive from Pacificare, following weeks of phone calls, to state that Reu's Durable Medical Equipment cap has been reached for the year and our insurers will no longer finance equipment.

Hard to believe, but it's actually gotten worse. Maxim are truly appallingly negligent and are doing nothing whatsover about it. Do we jump from the frying pan into the fire with another agency? One was actually lying horizonally under a throw which I'd use as a sofa protector. Speaking to a nurse about sleeping is the gateway to a no-show the next day. It happened on Saturday night and again last night and given last night's nurse was due to work for 3 nights, I guess that means tonight and tomorrow will be the same. It's an impossible situation because, as Dr Charlie said, we can't sleep whilst Reu is still throwing up some of his feeds.

LA School District
With weekly appointments at home, we'll work on the communication objectives of incorporating sign language into our routine and working with Reu on his hearing aid.

So many disciplines to follow and so many phone calls and appointments...Cardiology, Pulminology, Occupational Therapy, Speech Therapy, Physical Therapy, Endocrinology, General Paediatrics, ENT, General Surgery for the Gtube, Audiology, Urology, Opthalmology, Cranial Facial. In the World of CHARGE, I think Reu got hit pretty badly medically when I make comparisons to help me learn more about each of the challenges. But he has an easy going personality which makes me think, He's no trouble. Ironically that really.


Eva Nichole said...

Oh my god that nursing things with you all is really getting on my nerves just reading about it. They need to relize that if they work in the hospital they can not sleep so what makes this any different???
But everything else seems ok and I am glad to hear he raised his head what a huge milestone. I am so proud of him and I am sure you are too.
Hugs to all,
Crystal and Eva

MK said...

Auntie Cx,
thank you for the update WOW!!! I think our boys are so much alike. lucas as well is 6k and at 24' in length, glad to hear feeding by mouth is promising. lucas goes for his next swallow study soon for liquad feed by mouth so fingers crossed. pt,ot,speech with all of these working together rue will make very quick strides and changes so get your camera ready. lucas just in the past week as well as rue his holding his head up unprompted and doing great. he is trying to get his first cold so now is on zithromax. second shot of testosterone yesterday and getting bigger.Have you applied for medicaid?? mk

Lori Pullen said...

Keep the faith Catherine and something has got to give. I hope you can get the Nursing starightened out. I am glad the Little Boy Reuben is doing so well. Maybe with time, he will be able to stop throwing up his food. Give him a kiss from his Auntie Lori. If you need me, just give me a call. God Bless.

Candi said...

Congrats on all the progress! Once they start on the road of holding their head up things start to speed up. Luke hated his tummy time until he could roll by himself, now he does it constantly. He rolls and scoots on his back all over the living room floor. It is interesting what you said about Reuben's personality. Luke is also really good tempered and easy going. His other stuff gets so complicated sometimes (all the appointments and medicines and trach stuff), I feel really blessed that Luke himself is an easy baby. When I think about the constant level of discomfort he must be in - ear infections, sinus pressure, trach, central line, etc. I am amazed that he is always so happy - it gives me hope.
Take care,
Candi (Mom of Luke 9 mo chARGEr)

ellen charge said...

Y R THE SLEEPING IF THEY R SO TIRED THEY SHOULDNT B WORKING sorry bout that outburst but thats my belief i allwasy thougt nurses were perfect the ones who r on facebook would understand y id think that coz they were great people but have this feeling theyd say just dont make us ur example for everyone lol