Welcome to Holland

I came across this little story, and I found it very fitting and I wanted to share it with everyone who has been keeping up-to-date with Christopher’s progress. Thank you all for your kind and loving words to inspire Christopher (and his parents) along our journey. Love Cess, Greg & Christopher xx

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Saturday

Christopher had a good weekend, he has been reasonably calm on the ventilator and not fighting it as he has in the past. The drip in his head was removed on Saturday and replaced with a drip in his right arm. He still has the long line in his noggin.

Measurements

Weight – 2540grams

Friday

Christopher has had another restful day. He is still on the ventilator and the Dr’s are planning to take another Chest X-Ray on Sunday to see if his lungs have cleared and if they have, he will be off the ventilator early next week. Which is great coz that means we can cuddle him again 🙂

Thursday

Another long sleep today – 5.5 hours. Its easy to feed him whilst he is sleeping too – just pop it in the Gastrostomy tube in his tummy. At least this means he gets fed and his rest. He is now on a special high calorie formula with added protein, 30mls every 2 hours. Christopher has also had his wound drain removed.

Wednesday

Christopher slept for 6 hours in a row today – this is the first time he has ever slept that long in one hit! He has always had trouble with sleeping properly, because every time he seems to get into some sort of routine, he ends up having another operation. Fortunately his kidney has recovered from a little bit of a backward step after his last operation. It is back to “normal”. My kid’s kidney keeps surprising the Dr’s with its resilience – hopefully this is a good sign that he will get a decent run out of his ‘good’ kidney, and that it doesn’t fail in a hurry.

Tuesday

Christopher was back on the ventilator at 1am this morning. He was working too hard trying to breathe as well as coping with the pain of his tummy and chest. He also had his 2nd blood transfusion (32mls), as his Hemoglobin levels were too low and his colour was pale. Now that we have gotten over this little hiccup in his life, the plan is to fatten him up and grow him big and strong!

Measurements

Weight – 2530grams

Operation #5 – Ureteric Reimplant

Today Christopher is 6 weeks old 🙂 This time has flown by and dragged all at once, if such a thing is possible. Christopher was due to be extubated today as his lungs were clearing up so well, apart from one small hitch. He had only pee’d out 8ml in the last 24 hours. Another Ultrasound showed that the abdomen was fuller than it was last night. So they took him into the operating theatre at about 2.30pm and the surgeon went in to find that the hole left by the SPC had healed over, but he had a hole in his Ureter (the pipe from the kidney to the bladder). The surgeon had no idea how that got there (nor do we), so she removed it from the place it was at, shortened it and reattached it into a new position (and this now puts a stop to the kidney reflux he had). Christopher is now resting comfortably from his 5th op in 6 weeks and he is now weeing in the right direction!!!! Possibly all this was a blessing in disguise. Oh and they had to put drips in his head – because he has inherited shy veins from his mum! Christopher was extubated this evening as he was fighting the ventilator and seemed to be doing well.

Aspiration

We were woken up by a call from the hospital at 6am this morning to advise us that when they attempted the second time to replace the SPC (unsuccessfully), Christopher once again worked himself up into such a frenzy that he vomited up his last feed and unfortunately aspirated some of it into his lungs. Chris was working really hard trying to breath normally, that his Blood O2 levels kept dropping that they took a chest x-ray to see if his lung had collapsed. They decided to use the oxygen prongs to help him along. After a short while they changed him over to the CPAP machine and this didn’t work either, so Christopher is now back on the ventilator. He is likely to be on the ventilator for the next 3-4 days and is on prophylactic antibiotics to try and keep infection at bay. They are also starting on suctioning and lung physio to help loosen the milk and mucus.
Still with the original problem not addressed, they managed to put in a urethra catheter, but unfortunately Christopher was still not weeing much at all. He had to go to Radiology to put contrast in his bladder and they found his wee was leaking into his abdomen from the hole left my the SPC. So they reinserted another urethra catheter that has a balloon on the end so it can be used to seal the hole whilst it heals over. To add to all this drama filled day, his HG (haemoglobin) levels were falling so he is having a blood transfusion to fix that up and also will be giving double shot of Lasixs (diuretic) to kick start his kidneys.
He is now off the Fentanyl and is resting comfortably. I believe that Christopher managed to get through this day with more grace than his parents did that’s for sure. Its been his first set back since he was born, so we have that to be thankful for. Onward and upward Christopher!!!

Saturday

Christopher had a reasonable day today – a little tired and the Dr’s made mention that he didn’t seems “quite right”. His Supra Pubic Catheter (SPC) came out at about 6pm. This was considered a problem, seeing as Chris still isn’t weeing out the normal way. They called in the Surgical Registrar, who said they would need to replace it with another. An Ultrasound was done to help position the catheter. Christopher got so upset and worked up that the Dr’s decided to leave it for a couple of hours, give him a feed and allow him to calm down a bit. His sodium levels are a bit low and his White Blood Cell count is up (could mean an infection) so they are keeping a close eye on him.

Friday

the results came back from his kidney Ultrasound and his kidney function is now the same as it was before we went to Melbourne – Hooray!! 🙂 My little boy keeps bouncing back!! He was more settled today, which was nice to see. We had a nice cuddle this afternoon and I have decided to start reading him Harry Potter – seeing as the kiddie books were boring me. He loved it. Very cute to see. He was so quiet watching me, until I stopped reading and then he would start wriggling. I took some clothes in for Chris today, the first time the little nudie bum has had clothes on. 🙂

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Thursday

Chris’ last IV’s were taken out today. So now he only has the Gastrostomy and the bladder catheter left. Its the lest amount of tubes he has had since he was born!! The bladder (supra pubic) catheter, is being clamped off for 3 hours out of every 4, to allow Chris to start peeing normally. He is now back on full feeds which is 50mls of formula every 3 hours. So hopefully this will start fattening him up. He had a kidney Ultrasound today to see how his “good” kidney is going. His kidney function is a little less than it was before he went to Melbourne. The 6 minutes he was on heart by-pass caused slight kidney damage. We will have to wait to see if the function gets back to where he was. His kidney is considered on the “high-side of normal”. Which means he only has about 40% total kidney function of the average person.  So Christopher’s kidneys are a very precious organ. But his blood pressure is normal, so currently they are functioning well enough to keep Chris well. If the kidney doesn’t grow with him or fails at a later stage, it will mean dialysis and a possibly kidney transplant later on in life. He is still quite unsettled at times, so I started reading to him. The NICU has a whole pile of children’s books. Christopher seemed to like being read too. He seemed to drift off to sleep while I read (maybe he got sleepy listening to his Mummy – his Dad sure does!!) and then he would stir and grizzle when I stopped. 🙂

Wednesday

Spoke to the Cardiologist today, who did an Ultrasound on Christopher to check how the BT Shunt and heart are doing. Apparently the Shunt is working well and his blood Oxygen levels, and the Cardiologist is very happy with his progress. Christopher also had his last Chest drain taken out today. He is also up to 36mls (from 18mls yesterday) per feed every 3 hours.

Tuesday

Christopher is really unsettled, it seems they took him off the Morphine too quickly in Melbourne. So he is very easily upset and not sleeping very well. The doctors have decided to give him Cloral at 9pm and 3pm to help him get a good nights sleep.