Sleep Study

Another stable day for Christopher. He is having a sleep study tonight to see what obstructions he may have, this will also give us more of an idea about what to expect when he comes home. We stayed with him whilst he was prepared for the sleep study. An hour and a half later and a while lot of probes and attachments ALL over his body, they were ready to start. Chris was really good. After the first 10 minutes, where he got a bit irritated, he was very calm and looking at everything around him, whilst they were sticking stuff to his noggin and legs. It was quite cute to see how interested he was in all the stuff going on around him.

Also had a chat with his TOF/Pull-thru surgeon Mr A.F. who wanted to be paged when I arrived today. He breezed in and breezed out again, with a very quick monologue in the middle, advising me that he is not satisfied with the pull-thru as the fashioned anus is too high for his liking, as well as his sphincter having moved behind some muscle. Mr A.F. also said that he wants to refashion Christopher’s bottom some months down the track. To be honest all this happened much too quick for me to think, reply or react. I am annoyed that this has come (to me) out of the blue and some 9 weeks after the event. I want to know why it took so long for them to come to this conclusion and why nothing was said to me prior. I am waiting for Lisa (Stomal Therapist) and Dr P.M. (Paediatrician) to talk to the surgeon and hopefully supply me with some further information about what is going on.

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Monday

I had chats and smiles with Christopher today. It was a bit of mutual lovin’. He squeaked; cooed and smiled, while I made silly noises at him and smiled back. It was so lovely to have some real interaction with my son. He is such a total joy. Christopher now weighs 3.4kg and is 47.5cm long. he is finally growing steadily and is just that much closer to coming home and I can’t wait. I have been so patient for the last 11 weeks, but now I just want to bring my little man home, which is where he belongs.

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Just Pics

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Saturday

Christopher’s splints have been temporarily removed, until the Physiotherapist can see him on Monday. They are leaving really angry looking red marks on his ankles, poor little bugger, no wonder he hated them on. Greg saw Christopher for the first time since Tuesday night as he had been in Sydney for work. You could really tell how much Greg missed his little boy. It is just so lovely to see them having a chat and a cuddle.

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Friday

Christopher is now wearing his splints and they are very cute. I will take a photo of them tomorrow. He had a very good day, and its likely that Christopher will be home sometime next month. He has a sleep study on July 31 to monitor his breathing and then with a bit of luck he will be home not long after that. Yipeeeee! Can’t wait for that. Its getting harder and harder to leave him of a night after spending the day with him. He is so alert and looks at you quite intently whilst you speak to him, to which he responds with little squeaks, “goos” and “gahs”. He really is such a pleasure to be around. Christopher now weighs 3225 grams and his head circumference is 33.6cm. They haven’t measured his length for a little while, so I am not sure how long he has grown since the last time they measured him.

Tiny Little Splints

Christopher had little splints made for his feet today and they are so tiny.He was not too impressed about having the moulds made and certainly let the physiotherapist know that. It took about 25 minutes to calm him down and get him to stop crying and go to sleep. It is interesting to see that this kid is quite happy for people to prick his heels for blood samples and hardly flinches when they take blood from a vein in his arm or leg, but having splints done which is about as non-invasive as it comes and he screams the house down!

Wednesday

Christopher had quite an unsettled night last night which carried into this morning. He had a fever that got to 39.4 degrees, but they still couldn’t find out what was wrong with him. They ended up taking out his PCVC (long line drip) out thinking that it could be growing bugs as it had been in for almost 4.5 weeks (these drips are designed for long lasting IV access). So hopefully, with it removed he will be a bit more settled. Christopher had been looking unwell all afternoon. He was very unsettled and he had another temperature spike, which I think made him feel rather uncomfortable. His fever broke late this afternoon and his little body and bed sheets were soaked in sweat, and he seemed a little better after that. He was very settled when we left this evening, I hate leaving him if he isn’t himself or unsettled.

Hyperinsulinism

Blood Tests finally came back and Christopher has Hyperinsulism or Hyperinsulinemia (sort of like Diabetes in reverse – he produces too much insulin). The Dr’s have put him on some medication to counteract that. No idea what this means for the long term, whether it is just a “for now” problem or whether it my mean a long term treatment plan. Christopher’s paediatrician said that there is no known link between VACTERL and hypoglycaemia, so this makes our kid more unique *SIGH* I don’t think Christopher needs any more uniqueness in his life 🙂

Monday

The physiotherapist has decided to put removable splints on Christopher’s feet to start straightening his Talipes (club feet). They can’t put proper casts on at the moment as he still has daily heel prick blood tests. I guess his feet have been put on the back burner as they haven’t been considered to be as important as the other issues he has had since birth.

Sunday

Another spike in his Temperature (38.8 degrees), had the Dr’s running around again, getting blood and urine samples. All the results from Friday, came back negative and I have feeling these ones will too. Will have to wait and see.

Saturday

After the run around Christopher put us through yesterday, with his temperature and strange skin colour, he was as sweet and serene as can be. Typical – this kid obviously thinks he isn’t getting enough attention. Greg helped me give Chris a bath this afternoon and took over drying and dressing him. What a natural dad, Greg is turning out to be. Its lovely to see.

A VACTERL Buddy

Today Christopher and I met a lovely lady, Catherine and her 11 year old son, Ben. Her son has VACTERL too. It was lovely to meet such a sweet young man who has already gone through things that Christopher is yet to go through. Christopher also had a hearing test today. He had 5 probes stuck to his head and headphones over his ears. They tested Chris with sounds that ranged from 70db down to 10db and measure his brainwaves to work out what he can hear. Apparently, he can hear as low as 25-30db (70db is as loud as normal conversation), but didn’t register down to the 10db, but this more likely to be because of fluid in his ears, due to the cleft, rather than hearing loss. Chris will be referred to another Dr to investigate further. If it is due to fluid in his ears, he will have grommets put in when he has his lip fixed. This evening Christopher decided to raise his heartbeat to 170-180 (normal heartbeat for babies is 100-160) and he had a slight temperature as well as some diarrhoea, so as a precaution they have moved into a side room, by himself so he doesn’t spread any germs (if he has them). Half an hour later the little bugger’s temp was normal and his heartbeat down to 145-150!! I think maybe he was feeling a little starved for attention!! We have to wait and see what the blood cultures and the tests on other specimens come back as, before we worry too much.

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Thursday

Christopher’s Gastrostomy leaked twice today, so we had to “splint” his gastrostomy tube to stop it from kinking and building up back pressure causing the leakage. In 4 hours, Chris went through 2 sets of clean sheets and 3 different outfit changes. All we needed was the catwalk! Christopher is also having daily baths and just loving it, he kicks his legs and enjoys being swished around the water. A Pulmonary Medicine Registrar with a student doctor, popped by this evening and asked if the student could examine Christopher as part of the his exam. I had no problem with this and watch as the student doctor had to work out what Christopher had wrong with him and then explain his findings to the Registrar. Unfortunately the student failed his exam as he didn’t notice that Chris only had 9 fingers and club feet. He did say that he thought Christopher had VATER Association (the same as VACTERL, but without the cardiac and limb anomalies). So he was so close to passing, but because he missed obvious physical problems, he didn’t. I guess because Christopher is a little on the unique side, it makes for interesting learning for the students.

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A Mayonnaise Jar and Two Cups of Coffee

When things in your life seems almost too much to handle when 24 hours in a day is not enough remember the mayonnaise jar and the 2 cups of coffee.

A professor stood before his philosophy class and had some items in front of him.
When the class began, wordlessly he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.

The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly.
The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full and they agreed it was.

The professor next picked up a box of sand and poured it into the jar . Of course the sand filled up everything else. He asked once more if the jar was full. The students responded with a unanimous “yes.”

The professor then produced two cups of coffee from under the table and poured the entire contents into the jar effectively filling the empty space between the sand. The students laughed.

“Now” said the professor as the laughter subsided “I want you to recognize that this jar represents your life. The golf balls are the important things – your God, family, your children, your health, your friends and your favourite passions–things that if everything else was lost and only they remained your life would still be full.

The pebbles are the other things that matter likes your job your house and your car.
The sand is everything else — the small stuff.
If you put the sand into the jar first” he continued”there is no room for the pebbles or the golf balls.
The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you.

Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical check-ups. Take your partner out to dinner. Play another 18. There will always be time to clean the house and fix the disposal.”

Take care of the golf balls first — the things that really matter. Set your priorities. The rest is just sand.”
One of the students raised her hand and inquired what the coffee represented.
The professor smiled. “I’m glad you asked. It just goes to show you that no matter how full your life may seem there’s always room for a couple of cups of coffee with a friend.”

Wednesday

A good day today. Christopher was happy and very alert for most of the afternoon. Unfortunately his urinary catheter fell out, but it was popped back in with little fuss from the surgeons (they remembered him from last time 😉 )  Christopher shed a quite a few tears, but more likely for being poked and prodded, rather from pain. The Cranio-Facial Team popped over during their rounds and advised that because of Chris’s size they won’t fix his lip until he is 4-5 months old. We have an OUTPATIENTS (!!) appointment for the end of August to book in the surgery. Whilst we still have up to (approx.) 4 weeks until we go home, the nurses are starting to organise equipment for us to take home, as well as a couple of courses for me to do – like CPR and Oxygen training, in anticipation of the big move home.