3rd October 2007
We have now been here a week. Upon arrival Tristan was placed in Paediatric ICU due to the sedation he was under whilst traveling and monitoring his airway. There was talk of possibly a Trach but that is no longer required as now he has recovered from the sedation. Tristan was moved into the Step down unit on the weekend due to his progress which is great news. He is still his chubby happy self although I think he is a wee bit jet-lagged!!!! As all he does is sleep!!! Never mind after a week we are still tired too so who knows.
He developed a rash all over his body of which we are hoping isn't caused
by the rogue T-cells developing. He had a biopsy today and the infectious disease
doctors are checking everything thoroughly, they are hoping it could just be eczema
(probably spelt wrong) or possibly a reaction to one of his many medications.
Shane and I both had our blood drawn yesterday to start the process in relation to the
donor of the parathyroid gland. There is talk of Tristan's transplant possibly being in
2-3 weeks. They are currently culturing donated Thymus tissue and hopefully it
is suitable and clean. They are real happy with his progress to date and all the
nurses here think he is a cutie too!!! So I am sure he will break a few more hearts whilst
he is here that's for sure. There is another wee baby here from Chicago that
has already had his transplant and just waiting for his biopsy to be done and cleared, and
he weighs about the same as Tristan but the difference is, is that he is 9 months old!!!
That is why Dr Markert is so positive about Tristan because he is a normal weight
& size so will recover really well as the Surgery itself is not complicated, it
is more the monitoring and testing that takes the time making sure the Thymus has not
rejected and is producing the Mature Cells.
The trip over was long!!! I guess Shane drew the best straw as he got a night lay over in
LA so managed to get some rest off a plane. Although I have to be honest, I got
spoilt by Air NZ as they were very aware that I was non-stop to North Carolina. So they
took me through to First Class so that I could grab at least a couple of hour’s
semi-decent sleep. The staff on all the flights was amazing. We had a Doctor
& 2 Nurses from Auckland to LA to look after Tristan etc. Between 5 of us we had
approx 40-46 seats to use and were placed at the rear of the plane. Nobody was
allowed anywhere near our section which was great. US Customs came onto the
plane upon our arrival in LA and we were all cleared on the plane. We had all the
managers of both Air NZ and also LAX and dozens more making sure everything went smoothly.
We were even given numbers from Air NZ staff to call should either of us have any
problems anytime whilst we are in the US. Even the Stewardess' were coming to see us
before we we were transferred wishing us all the best with the Transplant and were
even given cards from some of their children whom we have never met wishing Tristan to get
well soon. That was such an amazing feeling. This is where Shane had to say
his goodbyes to Tristan & myself as we then had to transfer via Ambulance to our
private flight to North Carolina. Everybody made all our changeovers so smooth it
was unbelievable. Our next flight was a Leah Jet through to Wichita, Kansas where we
stopped for re-fuelling and then onto Raleigh, North Carolina. We arrived at Duke
Hospital at approx 2:30- 3:00am in the morning. I was then separated from Tristan
for a few hours while they ran tests and checked him over. All in all he coped
really well on the flights.
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17th October 2007
Sorry this is coming a bit late but things have been kind of hectic here.
Since my last email a lot has happened. Both myself and Shane started our
parathyroid donor tests last week. But unfortunately Tristan developed a rash the
middle of last week and had to have a skin biopsy to check what was causing the rash. It
was then discovered that Tristan's body was being attacked by rogue T-Cells. These
cells were maternal cells of which he got from me through the placenta whilst I was
carrying him. Unfortunately this has meant that the Parathyroid donor is no longer
required. But on a good note it is better this was discovered prior to his
transplant so as to not cause any further complications. Tristan is due to have his Thymus
Transplant tomorrow (Wed 17 Oct) at 11am. He was moved back into the Paediatric Intensive
Care Unit on Saturday to enable a transfusion of Thymoglobulin to be done. This is
done over three days for a period of 12 hrs per day. He completed the treatment this
morning at 4am. He came through the transfusion really well with not too many
complications so he has al of today to recover prior to his transplant tomorrow morning.
Lorelei Mason also arrived from NZ today and filmed Tristan again prior to his surgery.
I believe she is hoping for this to be aired on Sunday 6pm News but I will confirm
in a later email if I get a chance too. So keep your eyes open for TV1 News on
Sunday again at this point for an update. She will also be filming him once he
returns to the ward after his transplant, before she returns back to Christchurch on
Friday or Saturday.
Tristan is doing really well and is progressing to his milestones like any normal
healthy 4 month old which is a blessing.
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18th October 2007
Well Tristan has now had his surgery. All went well so far other
then he had to have a new central line put in due to his other one just about falling
out!! His hands are just way too fast & strong I tell ya!!! You would
never think there was anything wrong with him most of the time.
He returned from the Operating Room on a ventilator at 2pm this afternoon. And approx half
an hour ago (7:15pm) he extubated himself from the ventilator and is doing well. He
is on room air without the help of any nasal prong oxygen which is great news at this
stage. He will be very sore for a couple of weeks but he looks great and I am sure
we will have the smiling wee man back with us in no time.
On another note it appears that TV1 will be running his story on the 6pm news Thursday and
another follow up on Friday at 6pm again. So that I guess is today to all of
you. So sorry if you were all waiting for Sunday I put you wrong.
Anyway I will leave off for now and no doubt talk to you again real soon.
29th October 2007
Well it has been an eventful couple of weeks. As you are aware
Tristan has had his transplant and has been doing really well. He recovered really
quickly which is a huge bonus. There have been a few issues with his transplant site
unfortunately. Both of the incisions have opened up but the good news is that there
are no infections growing at this stage and they are treating them appropriately. It
is still a worry though, so we are being even more cautious now. I've attached a
couple more pics for you all to see how well he is doing. Our happy wee man is just
about back which is great!
It was really nice having Lorelei & Fitz here from TVNZ for a few days. Gave us
a sense of home which we are missing sooooooo much, but we also know that cross fingers we
may get home for the New Year. Tristan will be having his Biopsy around December
17th and once the results are in from that (approx 1 week later) we will have a better
idea as to when we can leave for home. Although it will take approx 5-6 months for
Tristan to produce the T-Cells properly the Biopsy will let them know if there are any
baby cells in the transplanted Thymus. So here is hoping. Tristan will be still kept
isolated initially back in Hospital and then isolated at home.
The weather here took a turn last Wednesday and rained for 4 days. We have had a
couple of cooler nights and days. We are hoping the temps don't drop but they need
the rain due to
Shane and I got taken to our first ever Ice Hockey game last week. One of Ronald
McDonald House's sponsors donated luxury suite tickets to the house and they took us to
see the Carolina Hurricanes versus the Vancouver Canucks. It was pretty cool. Had to take
some pics for the album of course! Its amazing how big they are on their sport here
I guess its the same as us with our
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7th November 2007
Well another eventful couple of weeks for the wee man. He is
weighing in now at 6.3kgs!! He is growing way too fast now. Last Friday
Tristan awoke with a 39.4 Fever. He has unfortunately developed an infection in his
line which means he has to have it removed and let the antiobiotic's try and clear the
infection and then once clear they will place a new line in his chest. The infection
in his transplant site seems to be clearing up, but it is being monitored closely.
We must see at least 10 different consultants daily at the moment. It can be all
quite overwhelming. But they are all really good and explain everything that
has happened or is going to happen so there are no surprises. The fact he
is still gaining weight is the biggest bonus.
On a lighter note Tristan celebrated his first Halloween. I have attached a photo of
him in his Halloween costume for you all to see. He looked so cute. All the
other kids in the Ward went Trick or Treating around the Ward. With the exception of
the Isolated kids. The nurses all visited the ones that couldn't venture out which was
nice. Within an 1/2 hour after the show Tristan was all curled up snoozing his
little head off.
Ronald McDonald House put on a big Halloween Party for the families also and the whole
house was decorated too. It looked pretty awesome.
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15th November 2007
Well this has been another eventful week. Tristan had another surgery
yesterday to replace his Central Line that was removed last week due to infection.
When they removed his infected line last week it was done at bedside without
anaesthetic! It was so hard to hear and see his pain, but the Surgeons felt that
with Tristan's infections and record with sedations they didn't want to take him through
to theatre and it would be better for him to have it removed bedside. The good
thing is that he recovered well from the surgery yesterday for the new Central Line, and
bypassed the PICU and came back to the floor! That was a huge thing for him as it is
a constant worry for us whenever he goes into Surgery. Even more so when we didn't
expect him to require any more surgeries other then his Biopsy in December. He is
looking so good!!! In fact if you were to see him today you would never believe he
was in Surgery only yesterday. He is back to his old happy self like it never
happened.
Anyway this is just a quick update hoping to find you all at home well as we are here.
I have attached a couple of photo's of the little man. One of which you all may have
already seen in the Press update earlier in the week. And the other one is of our
future Couch potato in practice!! The quote should read " Where is my
remote?" haha
Take Care and talk again real soon.
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6th December 2007
Well it has been a very hectic couple of weeks so I apologise for the delay in this update. Where to start?? Well where we had left off on the previous update we were trying to arrange an apartment as Tristan had been doing really well and the Doctors were wanting us in an apartment ready for him to be released. We arranged and signed the lease on the Apartment for us to move in Saturday 24 November. We had to arrange a rental car on the Friday prior to enable us to move in on the Saturday. How strange it is to be driving on the wrong side of the road!!! We moved into the apartment which has been great. Finally we are no longer living out of a suitcase!!!
Unfortunately late on the Saturday evening Tristan developed another fever. Back onto the Antibiotics while they try and find out exactly what has caused it. By the following Sunday lunchtime his Fever had gone. Phew!! Within 24 hours they believe his Central Line is once again infected!!! To make matters worse it appeared to be the exact same infection that he had had previously which had meant he required a new line. Their concerns were that Tristan may himself be producing the bug internally which would make matters worse. We feared the worst as other then his Biopsy we weren't expecting him to have any further surgeries. Once again he had to be closely monitored and constant blood cultures were taken. Basically our hopes of having Tristan finally out of a hospital with us were dashed. Through all of this you would never think that he was even unwell!! Our little fighter is such a star. He battled on like there was nothing wrong. He continued to be his usual playful self and even the Doctors and Nurses were amazed at how resiliant he is. By the following Thursday it seemed that the Antibiotics just weren't clearing the infection and discussions were had about removing his line. The Immunologists and the Infectious Disease team held a meeting to decide whether his line needed to be removed. Ultimately they discussed the options, as Tristan really does require the Central Line but due to having the same infection in 2 separate lines they aired with caution. A Decision was made that an alternative group of Antibiotics be tried in the hope of combating the infection. This way it gave us the weekend to see how he went with the hope it may clear, if it hadn't cleared by Monday morning they were going to remove it and place a PICC Line in either his arm or leg. We spent the whole weekend praying that all his cultures would come through clear.
On Monday morning the Teams reviewed his cultures and it would appear that they may have managed to clear the infection from his blood and also his Central Line. This was a huge relief to us, although it doesn't mean that he is clear to come out to the Apartment but it puts us back onto the right path again. Now he has to complete the IV Antiobiotics and stay clear before they can give us an idea of when he can come out with us. The only other issue though is the timing of his Biopsy. The approx date given was around 17 December It may be that they may not release him until after the Biopsy has been done, but ultimately even if we could have him with us in the Apartment for Christmas would be a huge bonus. It isn't home but at the moment it is the closest thing we have to it.
In relation to Christmas either way it is not really going to feel like Christmas for us. It will only be the 3 of us in a strange place. No kids, family or friends and of course being so far away from home so I guess we will have to celebrate Christmas when we finally return home. The best gift in the world though would be for Tristan's Biopsy results to be positive and for to have the chance of being a healthy little boy, something that only 5 months ago we would never have been able to imagine. We are just hoping that the kids back home have a lovely Christmas and don't feel they are missing out just because we aren't able to be there. Financially things are really hard and normally at this time of year we would have had all our Christmas gifts etc all arranged but to be honest we haven't even got anything so that will have to wait for us to return.
So all in all it has been a rather hectic couple of weeks so we are hoping that this update finds you all well. I have attached 3 more photo's of the little guy. One is of him reading his book to Dad, although I am sure it was meant to be the other way around! Another one of him sitting up. And another of him playing in his cot.
Take Care all.
Love
Michelle, Shane & of course the wee man
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23rd December 2007
Sorry for the delay in writing but it has been a rather hectic week. It is
Saturday evening now and I believe Sunday afternoon back home. On last Tuesday
afternoon we received the best news we have had in a long time. The Doctors finally
cleared Tristan to come home to the apartment with us!! Yay!!! We had only the
week before celebrated his 6 month birthday in hospital. What a huge bonus for him
to have got to that stage and to know that we were going to be able to bring him back to
the apartment for definite was huge for us. It has been such a long time
coming. So finally we got to have a wee angel with us in the same room that wasn't a
part of a hospital building. Not a nurse or Doctor in sight!!! It was the most
amazing feeling to walk out of the hospital with our little guy you wouldn't believe.
To be honest it was also kind of sad too. I saw tears in the eyes of a few of
the nurses and therapists as they watched him leave. Although I believe they weren't tears
of sadness but joy knowing that he won't need to spend Christmas in the hospital as well
as him doing really well. They were all so glad to see him finally leave the
hospital, although they know he will be returning in a few weeks for his biopsy. We
have waited for this day for so long I really can't put our feelings into words. But it is
only the first of many. The biggest will be walking him into his own room back home.
Now that is going to be one special moment, but at the moment we are just savouring
this one as it is such a huge step.
So I am writing this email with a smile on my face knowing that our little angel is one
more step closer to getting home. Believe me though the kitchen in the apartment
looks like a Pharmacy! Unfortunately his medications are continuous over a 24 hour
period so at the moment Shane and I are taking turns with the ones in the middle of the
night so at least one of us gets a decent nights seep. But to be honest we
really don't care. He could have something every hour and we can guarantee we would
both make sure we are awake there to administer it.
He is coming along in leaps and bounds. We took him back to the hospital on Friday
for his check-up. Dr Markert was amazed at how well he is doing. She is so
happy with his progress and is glad he can be out of the hospital with us for the
holidays. It appears that Tristan and the Australian baby (Rocky) are the only two
of her transplant babies that have been well enough to be able to leave the hospital
whilst they have been here receiving treatment. So that makes us feel better.
Tristan initially was having his Biopsy on 17 December but unfortunately due to Surgery
schedules and the holidays it has had to be rescheduled to be on January 8th. And
crossing everything we are hoping that he is cleared fit and well enough to fly anytime
from 15th January. So please keep him in all your prayers and thoughts as it really
is only about 3 weeks or so away.
As for Christmas we don't have any plans as we aren't able to go anywhere, so it will just
be the 3 of us in the apartment. But we plan on having our own special Christmas
upon our return in January.
I have attached a couple more photo's of the little guy. One is of him feeding his
face! and two are of him getting ready to leave the hospital on Tuesday evening.
So if we don't hear from you all before Christmas or the New Year, we would like to
send you al our love and best wishes and hope you al have a wonderful holiday as we hope
to have here. We miss you all so much!!!!
Anyway take care guys and talk again real soon.
Love
Michelle, Shane & of course the wee man
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How Can I Help Tristan ?
Donations can be direct credited into KIDS Foundation Tristan’s Hope Appeal Account ASB 123032 0232395 00
Or can be deposited at any branch of the ASB.
If a Tax receipt is required – please mail cheque / Payment details to
KIDS Foundation Tristan’s Hope Appeal,
PO Box 75-076
Manurewa
Manukau 2243