[tri-med] Re: Alex is Home

So glad your home and that the experience ended up to be a good one! Thanks
for sharing the details with us!

Ruth, wife to Rudy, mom to Brendon (20), Scott (18), Joshua (14), Matthew
Rudy
(full T18, born 09/13/01, Rudy Matthew (born 08/13/04)...and new little
peanut due 08/23/06.
http://members.cox.net/t18mom

Character cannot be developed in ease and quiet. Only through experience of
trial and suffering can the soul be strengthened, ambition inspired, and
success achieved. ~Helen Keller

> -----Original Message-----
> From: tri-med-bounce@xxxxxxxxxxxxx
> [mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Karen
> Sent: Tuesday, May 23, 2006 11:04 PM
> To: Tri-Med
> Subject: [tri-med] Alex is Home
>
>
> 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 actually in 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 was also 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't sure
> 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 centred around what was the best way to go for Alex,
> not whether they would do anything - 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 the
> malrotation 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 seen on
> 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 agreed to 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 surgeon recognised me and I recognised him - not from surgery
> or hospitals but because 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 it was 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 they have 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 then that 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 go home!!! 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 his normal 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
> anything but 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 Sydney Children'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
> she was 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 pacemaker battery - 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 and Alex 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 call his 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 think its 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

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