[tri-med] Re: Alex is Home

 
Karen, 

It is very nice to hear of a positive experience at a hospital. Alex sounds
like an amazing boy. So glad you are home safe and sound. 

Barb  mom to Annie 05/25/05-08/12/15


----------------------------------------------------------------------------
From:  "Karen" <karens@xxxxxxxxxxxxxxxx>
Reply-To:  tri-med@xxxxxxxxxxxxx
To:  "Tri-Med" <tri-med@xxxxxxxxxxxxx>
Subject:  [tri-med] Alex is Home
Date:  Wed, 24 May 2006 16:03:32 +1000
Well we got home late yesterday afternoon. Everything went so well. I really
like Alex's new pediatrician. I was so nervous because George had been a
wonderful ped and has been through everything with us since Alex was a baby.
Just the thought of breaking in a new pediatrician was scaring me. Everyone
told me the new ped was great - and they were right!!!
For the record I will give a chronology of what happened, just in case it
helps someone else later on.

On the Thursday Alex had a really bad low temperature episode. I was
actuallyin the city with him when it happened. On the plus side I had his
wheelchair with me, on the down side I had caught the train in. So I got
caught on the train with him losing consciousness. City Rail were great
though - the guard saw we were in trouble and called ahead to our nearest
wheelchair accessible station and organised a wheelchair taxi to get us home
- at City Rail's expense!!!!

He seemed to settle down after that episode but on the following Monday he
got sent home from school with a 33C temperature and he was complaining of
pain in his side. Alex has an abnormal response to pain, it is much reduced,
so when he complains of pain I tend to pay attention. I was doing the usual
do I or don't I take him to the hospital dance all Monday night, but it
appeared to settle. His temp came back to normal so I thought it had passed.

I let him go to school on Tuesday (Alex loves school) but his aid called
about midday and said that his temperature had dropped again (34C) and he
wasalso complaining of the pain in his side. I had already put in a call to
his GP who had said that if it happened again he needed a surgical review at
the hospital. I was happy to treat the low temperature, but the pain I
wasn'tsure about simply because Alex NEVER complains of pain unless its
severe.

I collected him from school and went straight to the hospital. The doctor
there was GREAT. He felt that it was probably appendicitis and if it was any
other child he would just take them out there and then, but Alex being Alex
he wanted a pediatric intensive care unit handy just in case. So our local
hospital organised an ambulance, nurse and doctor to move him over to the
Children's Hospital. Its a different Children's Hospital to what we are used
to so combined with a new ped I was really apprehensive.

We didn't arrive until about 11pm and were met at the door by his new
pediatrician. He was marvellous. Wednesday and Thursday's discussions
centredaround what was the best way to go for Alex, not whether they would
doanything - thats a first!! Because of the abnormal pain response it was
hard to work out just how bad the pain was. Believe it or not Alex kept
telling us that it felt like his appendix was stuck to him. The GI kept
saying that he shouldn't still have an appendix, that it would most likely
have been removed when he was a baby and they had corrected his malrotation.
It was almost 12 years ago and my memory of the specifics werent as clear as
I would have liked, but as I kept telling them I was pretty sure that the
surgeon told me afterwards that they had left his appendix behind because
themalrotation of the lower bowel wasn't as bad as they had expected, and
they had only corrected the worst parts with the upper bowel (around teh DJ
flexure). That is they had
  gone in expecting to do a LADDS procedure but in the end hadn't.

The surgeon tried very hard to get the theatre report from the old hospital
but surprise surprise, they couldn't find it - they could only find the
anaesthetic report. So early Thursday morning my 80 year old neighbour
brought over my copies of Alex's records. From them we were pretty sure that
they hadnt taken his appendix - the discharge summary didn't mention it and
it certainly wasn't in the histopathology report.

Late Wednesday night they did a CT scan with contrast (always a risk with
Alex because of his allergies) and found that he either still had his
appendix and it was the "funkiest" appendix that they had seen in a long
time(surgeons words :-)) because it was covered in nodules and it was longer
and thicker than it should have been. Or else it was a growth or something
else totally. The good news is that there are no nephrogenic rests to be
seenon his kidneys and his liver is clear as well.

So surgery was scheduled for Friday afternoon. The only arguement, and it
wasn't really an arguement, just a repeated discussion, that I had with them
was over pain relief. I kept insisting that they only use morphine if it was
indicated, not simply because it was "normal" to give morphine post surgery.
They didn't really believe me about his pain response. In the end they
agreedto give him lots of local in theatre and Fentanyl in recovery if
needed- any further pain relief post op was at my discretion.

Alex came out of theatre about 5.30pm and I met with the surgeon. The
surgeonrecognised me and I recognised him - not from surgery or hospitals
butbecause Alex played soccer with his son a few years ago........ its a
small, small world. He explained that the appendix wasn't very inflamed but
it was adhered to his abdomen (just as Alex had described it!!!!!!). Why he
actually had adhesions there we arent sure. There were no violin strings so
it wasnt adhesions caused by nasty abdominal infections or anything. His
abdomen was also full of "free fluid" - thats a yellow fluid our abdomen
produces apparently when we are battling certain viral infections.

He divided all of Alex's abdominal adhesions, removed his appendix and also
washed out his abdomen to reduce the effects of the virus in his abdomen. He
ran the bowel and found no Meckel's (that was another possibility as to the
cause of the pain) They weren't sure that they would be able to do it
laprascopically because Alex has had so many surgeries and they felt there
may have been too much scar tissue. But they did - it took 4 incisions but
itwas all done laparscopically.

While they were in there I asked the geneticist to request a cytogenetic
analysis on the appendix. She agreed but said that it was the first time
theyhave ever done a karyotype on an appendix!! they also took another skin
slice from one of the entry wounds No additional scar or pain but we get
another skin sample :-)

I went into recovery and Alex was still very asleep. As he was going under
the anaesthetic his last words were "I love you Mum" - coming out his first
words "Can I call Lloyd" (Lloyd is a friend from school :-))) Kids!!!!!

He did ask for some pain relief in recovery so they gave him some Fentanyl.
Unfortunately (or is it fortunately) he doesn't have have the same reaction
to Fentanyl as he does to Morphine and he actually desaturated a couple of
times after he had it. The recovery staff were really concerned that he
hadn't come out of theatre with a PCI - but were happy with my explanation
that it was at my request. A PCI and or morphine could always be added, but
if it was there, or was already charted then there would be the tendency for
nurses to feel he "needed" it without him actually expressing that he wanted
it.

We got back up to the ward about 7pm. At 9pm Alex wanted to go to the toilet
and refused a bottle in bed. So he got up and walked about 15 yards to the
toilet and back again!!! About midnight he walked to the toilet again and
then wanted some more Fentanyl (he liked it!!) but all that was charted was
Panadol (Tylenol). I opted to give him the Panadol and then "see" how he
was.About 2am he asked for the Fentanyly again so the nurse called the
registrar who wrote up some codeine for me. By the time that was all done
Alex was asleep. We gave him the codeine via gastrostomy anyway.

After that he was walking fairly freely, happy to stay in bed for the most
part though :-) He had some more panadol about lunchtime on Saturday and
thenthat was it. Every time we offered it he refused to have it!!! Saturday
night he was a bit restless and setting off his monitor all the time so the
nurse asked if she could give him some codeine, I agreed, not that it really
settled him though.

The surgeon came around early on Saturday morning and said that Alex could
gohome!!! So that was less than 24 hours after the surgery!!! He would only
have been keeping him in hospital for pain relief and seeing as he wasnt
having any he was happy for him to go home. Alex's normal temperature is
about 36.3 C and on the Saturday he was running what I class as a low grade
fever for him (37.3 C axilla) so I opted to stay in until it went down.

He had a Shapiro's crisis on the Saturday afternoon / night and again on the
Sunday night. Neither needed treatment, we just watched him closely and
warmed him up with blankets. Monday night his temperature dropped back to
hisnormal so we came home Tuesday afternoon (yesterday). He is walking
around, it catches every now and again so he has a bit of a left sided lilt
at times, but he is bending down and acting very fine. He wont carry
anythingbut he is certainly not complaining about anything either.

This morning he got up and got ready for school!!!! He was most indignant
when I said no - not until tomorrow at least.

I was very impressed with both our local hospital (Sutherland) and the
SydneyChildren's Hospital. At all times we were treated with the utmost
respect. When I mentioned that Alex was for full resus they actually said
that they never questioned that at all. I had a bit of a run in with one
nurse - and I didnt even have to really complain. This particular nurse was
Asian and fairly new to Australia. I became concerned when she didn't know
what anaphylaxis was. Not good for anyone who is giving antibiotics all day,
let alone looking after Alex. I mentioned it to the NUM and she agreed that
it wasn't good enough (thats a first) and that she would ensure it would be
dealt with. The next day when she came on duty she wasn't with any patients
but doing training!! Alex did have her one day over the weekend, but when
shewas on I wouldnt leave his side (paranoid mother). When she came to take
to his temperature she wouldnt go by his machine because her thermometer was
a degree lower.
   I tried to explain that it was because his machine was reading a core
temperature (rectal probe) and she was doing skin (axilla), and that a core
temperature is ALWAYS 1 degree celsius higher than skin. She just kept
saying"I don't understand" - that worried me so even when she took his
temperature I made sure I held the thermometer in (many nurses just stick it
under the arm and don't ensure a good skin contact which gives an inaccurate
reading). Finally she said to me "you don't trust me do you" and I just said
"no". Might have been mean but it was true. Anyway that was the ONLY problem
we had in the entire week. Minor compared to past experiences. The doctors
just told the nurses to listen to mum, if she wants anything give it to her.
And the nurses accepted that. When we left I thanked the nurses, especially
as I know that its hard to care for someone as "different" as Alex. They
turned around and thanked ME for being so helpful and having such a great
summary sheet an
  d for including his protocols when he was admitted.

Alex made some great friends in there, and so did I. One mum has a daughter
with infantile spasms, she was starting the keto diet and we have already
agreed to meet up for coffee when she gets home. Another mum and I are also
going to meet (no firm date as yet). Her daughter was born without ears and
had recently had the rib graft surgery to create ears. Thats the surgery I
want Alex to have. Her daughters ear (only one has been done so far) was
gorgeous. I mean that it, it was really pretty and so natural. So I am going
to try and get in to see the surgeon. We may be able to get the surgery done
when they crack Alex's ribs again in 12 months or so to replace his
pacemakerbattery - one less scar......... Her daughter is also getting a
permanent BAHA. I thought that Alex wasn't a candidate for a BAHA but after
talking with her and reading some info that she had I am not so sure so we
may explore that as well. It may mean fundraising as they are $8,000 each
andAlex would need
   two, but if it helped.......

It was actually funny, it was a 6 bed ward and Alex had the middle bed.
Either side of him were deaf children, it really made Alex feel at home and
meant that all the parents understood when they turned the TV and
playstations up too loud :-))

In the bed opposite was a young teenager. He had broken his leg playing
football and ended up with a bone infection. He was so good with all the
kids. Seriously he was just brilliant. I have decided that I am going to
callhis school and his football club (he plays for South Sydney juniors) and
applaud them for his behaviour and attitude. Its easy to complain but I
thinkits all that more important to give praise when its due. Especially as
our footballers have been getting a lot of press lately for bad behaviour.

I think thats about it. What started as a very scary experience ended up
being a good one, well as good as any hospital experience can be. Its just a
pity that it had to happen. Alex hadn't had a hospital admission for 2
years!!!! Ah well lets just hope its 2 years till the next one.

Life consists not in holding good cards but in playing those you hold well.
                                             -- Josh Billings

Keep Looking For Rainbows!!
    _--_|\
  /Karen \
  \ _.--._ /
           v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                   Building ___ooOOoo__ Rainbows
                        www.trisomyonline.org
                   Families Helping Families On-line


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: