Back to Rose Ward

Christopher came through last night with gutso. He was off the Morphine by 9am and only on Panadol for pain relief.  By 3.30pm we were back in Rose Ward, and Christopher slept the afternoon away.  Dr. H.B. (Urology Surgeon) came by about 5.45pm to see how he was going and was really pleased with the way he handled to operation.  Both DH and I are really pleased with how Chris has bounced back. Lets hope he does this good on September 11, when he has his lip repaired.

Operation #6 – Vesicostomy & New Gastrostomy Tube

Christopher did so well today with his operation. He was taken to Theatre at about 3.30pm and was in HDU by 6pm, with a Stoma in his tummy and a new (bigger) Gastrostomy Tube. A Vesicostomy is an operation which makes an opening (stoma) below the belly button. Christopher has a Neurogenic Bladder with urine retention. The muscles holding urine in do not get the message that it is time to let go. He has been experiencing recurrent UTI’s which if not treated in time will inevitably cause kidney damage. His bladder will continue to grow as he does and will fill up and then empty directly into his nappy from the stoma. This means Christopher will no longer need to be catheterised and this will limit the amount of Urinary Tract Infections that he will get. The Vesicstomy will be reversed by the time Christopher is 2 years old.
The bigger Gastrostomy Tube, means that it won’t take so long to feed him and the tube is less likely to get blocked.

When Christopher came to HDU, he was breathing on his own and was a fantastic pink colour and very calm. I am so proud that he came through the operation as well as he did.

Countdown to Operation #7 – Cleft Lip Repair.

Countdown to Vesicostomy

Tomorrow is the day that Christopher will have his Vesicostomy and have a bigger Gastrostomy Tube put in, providing that there is a HDU bed available for him.

He had a really good day today, such a happy little man, with lots of grins and chats for all.

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New Casts

Christopher had his second set of casts put on today. He got through the procedure, so much better than last time. A little bit of a grizzle towards the end, but he did so well. His feet are actually looking straighter. So we can only hope that the casts will do the trick and that Christopher may be able to get away with not having the surgery at a later stage.

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Cleft Lip Repair Diagram

Here is a diagram that I found on the Internet (sorry, I can’t remember which website I borrowed it from)  about repairing cleft lips.

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Cranio-Facial Appointment

We had an appointment with Mr. E.T. today, the Cranio-Facial surgeon who will be fixing Christopher’s lip and palate. Christopher has been booked in for surgery to correct his cleft lip on September 11th, whilst his palate will be corrected at the end of November (date to be confirmed).

Even though I know that it is best for Christopher to have his lip fixed, not only from a social point of view but from a speech and development aspect too, to be honest, I do feel a little sad, that the little boy I gave birth too, will be forever changed physically. It may seem a little weird to say that, but I love my little man just the way I made him.

Another full on day

Poor Christopher, finished off his crappy week with another crappy day. He woke up with a chesty cough, so they carted him off to Radiology for a Chest X-Ray, to make sure he wasn’t getting sick again, so far so good. Then he had his immunisations, 2 injections in his left leg and 1 in his right and also an oral vaccination for Rotovirus. I felt very sorry for him, its been a while since I have seen one of Christopher’s award winning smiles, but I think he has every reason at the moment to withhold them.

PIC Line is in.

Christopher had his PIC line put in this afternoon, after another 4 goes this morning (and 5 last night)  to try and get a drip into a vein. IV access is required for antibiotic treatment for his latest UTI and it also means that there will already be access for when he has the vesicostomy next week. (Tentatively booked for 30/8). The PIC line insertion was only supposed to take 45 minutes but Christopher didn’t get back to the ward until 2 hours later. He was such a very unhappy little chap and once DH and I got him cleaned up and all sorted, it took nearly an hour to settle him to sleep. I wish that I could just take all the pain and unpleasant stuff away for him. I would happily swap places with my child, if I never have to see him that upset again.

Coming home…

has been delayed again. *SIGH* We (the Dr’s & I) have been organising lots of stuff for Christopher’s home coming. It was set for early next week, but he has decided to get a stubborn UTI, which can only be treated via IV antibiotics. A new PIC line (peripherally inserted central catheter) is to be inserted tomorrow, so that means at least another 5 days in hospital and then the Urology Department have decided that Christopher would benefit from the Vesicostomy sooner rather than later. So that has been tentatively booked for next week, which also adds extra time in hospital. So, unfortunately we are looking at least another 2 weeks, before the prospect of home. I have to admit, that my patience is truly running a bit on the thin side. I have been so patient for the last 14 weeks, but after today’s news, I am feel like I could just lose the plot. But after a couple of dozen silent tears ran down my cheeks, I feel that I can once again, face tomorrow.

Catheters and Casting – Take 2

Christopher had his feet cast today. The plasters start from his toes and go all the way up to the tops of his thighs. These will have to be changed on a weekly basis to allow for growth and to ensure that his feet are straightening correctly. Christopher was a very unhappy boy when they were putting on the casts. It only took about 25 minutes, but being mucked around with, really annoys him. Poor little tyke had tears and everything, and was only happy once it had all ended and had cuddles with Mum.

Whilst the casting was being done, Christopher’s catheter fell out (again due to a deflated balloon). So he had to have that replaced this afternoon. He slept through the 10 minute procedure. Obviously he has a good pain tolerance, but just doesn’t like being poked, prodded and examined. It possible that he may have already worked out that Dr’s = Bad and Mum & Dad = Good :D. Then again, if every time someone new comes to see you and they don’t give you a cuddle, its likely that you are going to be suspicious and tense.

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Catheters and Casting

Christopher’s urine catheter fell out yesterday (the balloon holding it in place had deflated), so the Dr’s decided to give him a 24 hour trial to see how he would go. Unfortunately, Christopher didn’t wee as much as the Dr’s would of liked (meaning that he was not able to empty his bladder fully), so another one had to be inserted today.  Christopher has a neurogenic bladder, with urine retention, which means that the nerves that carry out the normal bladder functions, do not work and his can’t expel the urine on his own. The urology department is keen to put in a vesicostomy, which is when they pull the top of the bladder up to the abdominal wall and create a small stoma for the urine to flow out of. This still allows the bladder to grow as Christopher grows and also allows the bladder to fill (and allow Chris to know what a full bladder feels like) and then it will empty directly into his nappy. The vesicostomy is only a temporary measure of between 3 and 12 months, to eliminate the need for continual permanent or intermittent catheterisation.

Christopher is also due to have casts put on his feet tomorrow to help straighten his Talipes (Club Feet). Hopefully putting on the casts won’t upset him as much as making the splints did! These will be changed weekly for quite a few months, until his feet are straightened and hopefully that will be the end of it, but Christopher may still need surgery at the end of it all to lengthen his Achilles Tendon. Time will tell.

Feeding Time

Christopher gets fed all his feeds and oral drugs through a Gastrostomy Tube or PEG, that goes directly into his stomach. Chris will get a button when he is a bit bigger. The PEG is likely to stay in for 12-18 months, but it could stay in longer, especially if he has long term feeding issues. Christopher is currently too little for a proper PEG, so he has a Foley’s Catheter in place (Foley’s Catheters are usually used as urine catheters). Its a size 5 (so really small) and 35mls of Nan Formula takes between 25 and 45 minutes to go through.   This gives Christopher and I a lot of time to ‘chat’ during his feed.

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Christopher Smiling :)

Greg took some lovely pictures of Christopher today smiling.

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Thursday

Christopher came off the continuous feeds today and back onto Bolus Feeds during the day of 35mls/3hrly. He had his first one at 1pm and seemed to be doing quite well, but had a small spill at about 2.30pm. He got through 25mls of his 3 o’clock feed and it all came up again (faster than it went down mind you!). So the poor little mite obviously wasn’t ready for bigger volume feeds after a week in PICU (on only fluid, before graduating to the continuous feeds). So we are back on continuous feeds of 18mls/hr, with the option of moving him back to the Bolus Feeds again at a later date. Obviously having a vomit isn’t a real problem for most kids, but with Christopher he has a very clever trick of aspirating, so it is really not worth the risk at the mo, especially seeing as we just got him back from PICU!

Clown Doctors and Back to Rose…

Hooray, Christopher is back in Rose Ward. 🙂 I am really pleased that we have made that one step closer to H-O-M-E (If I spell it instead of saying it, then hopefully I won’t jinx us). Dr. P.M. (Paediatrician) was telling me today that the Urology Team, want to give Christopher a Vesicostomy (a self draining hole in the lower abdomen to allow free urine drainage, for people with bladder problems). We want to wait and see how Chris goes, once the catheter is removed to see if he copes by himself.

The Clown Doctors came past Christopher’s cot today and stopped for a visit. I had a back massage from Dr Blot and a song from Dr Heebie Jeebie. (www.humourfoundation.com.au) It is the third time that they have passed by Chris’ cot, since he has been in hospital and it’s really good fun and a nice distraction to the hospital routine. Christopher now has a card from the Clown Doctors which says:

To Christopher Steven,

All the best from the Clown Doctors. You may go 50+ smiles per hour.

Dr Blot and Dr Heebie Jeebie”

Clown Doctors