Friday, March 31, 2006

Monday, March 27, 2006

Resp Appt

We had two appointments today, the first one was with an Opthamologist who is doing some research into the outcomes for premature babies with ROP I am really pleased and proud to be able to say that Michael did really well with the assessment, and the Opthamologist assessing him was really pleased with how well Michael did.

Next was our appointment with the Resp, unfortunately since our appointment two months ago, things don't appear to have moved on much, there still has been no word or assessment done by Speech and Language, despite a referral 6 months ago. Unfortunately due to sickness, holidays and other commitments there has been no Radiology Meetings, so we still don't know if we are to get a repeat CT done. The videos I did of Michael sleeping have not as yet been looked at.

I did ask about the chest deformity, and was asked if anyone else within the family has a chest of that shape, when we answered no, we were advised that it is due to the level of damage within Michael's lungs. The scars on the lungs have pulled Michael's chest into this shape, I guess just one more outward sign of the turmoil within his lungs.

We did however come away with an appointment for a months time, and a pulsox monitor to wear for 24 hours. This will monitor Michael's saturation levels for 24 hours, and give them some idea of how Michael SAT's.

When Michael was younger we were always told his 02 (oxygen) saturation levels had to be above 95% and even now 6 years later, that level still sticks in my mind as being the level needed. So can you imagine the heart sink to realise that if we hit 95% we were doing well?!?! Michael sat mainly between 89% and 94%

I remember a couple of years ago taking Michael to see another Consultant who had his SAT's monitored, he was quite happy with Michael sat'ing at 89% because as he put it "he probably doesn't sat much higher than that anyway." I remember feeling quite indignant because Michael could sat at 97% with no problems, I remember thinking at the time, 'that is so wrong, how can you accept 89%?? why aren't you concerned?'

Now here I sit and it appears that 89 - 94 is 'normal' for my son, and I guess I'm the only one who is surprised by this.

I also know this is part of my ongoing battle; to let go of the expectations of the past.... I have to confess that his 02 needs are something that I have trouble letting go of, they are such a big part of his life and have been for so long, that magic figure of 95% still looms large!!

Sunday, March 26, 2006

The Sunday Times

The Sunday Times

March 26, 2006

Doctors call premature babies ‘bed blockers’

Sarah-Kate Templeton, Medical Correspondent.

PREMATURE babies who require months of expensive intensive care in neonatal units have been labelled “bed blockers” by one of Britain’s royal colleges of medicine.
The Royal College of Obstetricians and Gynaecologists (RCOG) says the huge efforts to save babies born under 25 weeks are hampering the treatment of other infants with a better chance of survival and a healthy life.

As the NHS faces an increasing financial crisis, with beds being closed and jobs axed, it says these very premature babies are “blocking” much-needed intensive care cots, sometimes forcing expectant mothers with potentially healthier babies to be transported by ambulance to other hospitals.

In a submission to a two-year inquiry into premature babies by the Nuffield Council on Bioethics, the college says: “Some weight should be given to the economic considerations as there is a real issue in neonatal units of ‘bed blocking’, whereby women have to be transferred in labour to other units, compromising both their and their babies’ care.”

The statement reflects a growing view among child specialists that babies born under 25 weeks should be denied intensive care and allowed to die.Next month the Royal College of Paediatrics and Child Health will debate a motion at its annual conference that it is “unethical” to provide intensive care routinely to babies born under 25 weeks. In practice, they would only be saved in exceptional circumstances.

It would shift Britain towards practice in Holland, the only European country that accepts such babies should die. One paediatrician opposing such a change described it as “involuntary euthanasia”. However, Susan Bewley, chairwoman of the ethics committee of the RCOG, said: “I would prefer that every baby could be treated, but we cannot get away from the fact resources are not endless.”

About 800 babies are born each year under 25 weeks. Medical advances mean about 39% of those born at 24 weeks now survive, and 17% of those at 23 weeks. A normal-term baby is born at 40 weeks.

The cost of treating very premature babies is high. A neonatal intensive care bed costs about £1,000 a day and very premature babies can require intensive care for four months.

Research to be presented at the Royal College of Paediatrics conference shows babies born at 25 weeks or under cost almost three times as much to educate by the time they reach the age of six as those born at full term — £9,500 a year compared with £3,900.

Professor Sir Alan Craft, president of the Royal College of Paediatrics, said: “Many paediatricians would be in favour of adopting the Dutch model of no active intervention for these very little babies. The vast majority of children born at this gestation who do survive have significant disabilities. There is a lifetime cost and that needs to be taken into the equation when society tries to decide whether it wants to intervene.”

Any change to a Dutch model would be opposed by parents such as those of Joey McCormick, born three weeks ago at 24 weeks’ gestation. Doctors say he has a 90% chance of living. His father Daniel McCormick, a chef from Norwich, said: “The doctors behind the proposals must regard Joey as a number and an expense, but to us he is our little boy.”
Joey’s doctor, Paul Clarke, a neonatologist, said: “To me it all sounds too much like attempts to bring in involuntary euthanasia at the opposite end of life.”

David Thomas, from Oxford, was born at 24 weeks, spent 4 months in hospital but now at two is healthy. His mother Michelle, a psychiatric nurse, said: “Not to have given David the right to life would have been unethical

Friday, March 24, 2006

Art work

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I am really proud of Michael's artwork,

I think we may need to work on what you can, and can't draw on!

Wednesday, March 22, 2006

Tubes and things

I was sat at the table last night with DH, talking about Michael and his lung issues, the times we've spent in hospital and all the things that have happened over the last 6 years. How sick our son has been during that time, and the upheaval that has gone along with it.

We are so looking forward to the day when all this ends, when there is no more sickness, and the oxygen concentrator is returned. We were saying last night how we don't ever want to go back to the days that have gone before.

But it started me thinking, about how things have been, and the things we've not been able to do. Simple things that lots of families take for granted, such as being able to celebrate Christmas altogether as a family, or even being able to plan things for Christmas, like going to relatives, and winter birthdays, we have missed many of the things that families are supposed to be able to do together.

There are certain places that we know it is just impossible to take Michael too, such as museums, and aquariums. I tried, and it wasn't pretty!! Michael loved the aquarium, but he scared the fish silly! And yes we got told off, and told to control him, and stop him from banging on the fish tanks. So he ended up strapped in a pushchair, which then left him fighting and screaming round the aquarium.

Holidays abroad are just a complete no.....the thoughts of spending x number of hours on a plane with Michael, scares me silly. I don't think it would just be him that needed sedating!! It's not just that, but the extra cost of taking Michael, in insurance, and needing 02 etc puts holidays abroad way out of our budget.

We have however discovered that we can do theme parks, because Michael is registered disabled we can get passes to save us having to queue! But we learnt that lesson the hard way, after spending 5 hours wandering around because the queues were just too big for Michael, so we got more done after 5pm when everyone else went home.

On the way out the park we discovered a scheme for disabled persons, which most theme parks have, and would have saved us a lot of tears and a lot of trauma.............but left me with guilt.

Michael's disabilities are hidden disabilities, there is no obvious sign of a disability, so getting to the front of the queue means walking past all these people who have been waiting patiently for their turn, so do we go to the front or do we wait our turn with a flailing, screaming, wailing child??


We now have appointments for the children's hospital for July 2006, so 4 months time. Between now and then I have half a rainforest of paperwork to complete, if I don't lose it first!!

The first appointment is with a Paediatric ENT and that is at the beginning of July, the second appointment is for the Dysphagia Clinic and is 3 weeks later. So we'll have two trips into London on the train, fortunatly they are both early afternoon appointments, but I'm thinking we'll still have one rush hour to deal with, as Michael doesn't do crowded commuter trains very well!

Last time we took him into London on the train, was for his Videofluroscopy, when we discovered that Michael has his swallow issues, and we bought nibbles from the concourse to eat on the train on the way home, and just as the train was pulling out of the station, Michael's gag reflex kicked in, got us some strange looks from the others on the train!!

But I'm looking forward to going and hopefully getting some answers as to what is going on with the snoring, SAT's dropping etc.....if its something and nothing and therefore can be forgotten about, or if it's just one more complication to add to the list!

Tuesday, March 21, 2006


Michael recently had an OT/PT assesment in school to see how things are coming along with his hypermobility.....the good news is that all is well with his fine motor skills. But his gross motor skills still need some working on!

Saturday, March 18, 2006

Welcome Back Shelley

Shelley has started another Blog and it's great to see her back and blogging again.
Go take a look

Sunday, March 12, 2006

Wow, update

It's been a while since I updated what was happening around here, and I think if you've read my last post you may have gathered, I've been doing some sole-searching as to do I carry on or do I just give up and not post anymore. If I don't post there's no information to take and use elsewhere.....but in not posting I am also losing the ability to share the reality of having a premature baby, with long term issues, and that is far more important to me, than some sad person who needs drama. So I have decided that I will continue to post, so sorry folks your stuck with me for a while longer!! And to Kristin and Jenny, thank you.

So, what can I tell you?? Michael has been seen by the SALT, regarding his stammer/stutter or to give it it's correct title, Dysfluency!! So there you go another label to hang around Michael's neck!! The SALT who specialises in Dysfluency, is working with the SALT in school at the moment, and has given her some suggestions and ideas to work on to try to improve the stammer!! She's then due to see him again in about a weeks time, to see how things have improved. I have to admit things do seem to be slightly better, but oh boy when he gets stuck, he really gets stuck!

When I spoke to the SALT at school I asked if she'd received a request for a feeding study, from the Resp, that was sent 6 months ago......guess what??? She hasn't.................

She has now though, because I sent her a copy of the letter!

We still don't as yet have a date for surgery, but we did get a letter to say we are on the waiting list, I guess I should ring to find out how long the waiting list is!!!! (I just haven't got around to doing that yet!!) Because then at least we'll know what the chances are of him getting to the top of the list, in the middle of some of the things DH has planned for this year!

Michael is also going to be taking part in some research into the long term effects of Retinopathy of Prematurity, or ROP as it's known around these parts! ROP is a condition which affects the eye development in premature babies, and means the blood vessels grow in places they wouldn't normally grow in the eyes of term babies. Michael had Grade 3, stage 3 ROP and narrowly avoided needing lazer surgery. Anyhow we have been asked if Michael could be tested as part of this research, so we have agreed, and once he's had this done it will then be appointment with the Resp on the same day! Last resp appointment was awful, so DH is coming with me, hopefully he will be able to keep Michael under control while I talk with the Doctor!

We also received a letter in the post from hospital z, remember my post about going all the way round the houses in order to be seen in the hospital we wanted to go to?? Well the Paed has referred him to hospital Z, which is a children's hospital so therefore has Paediatric ENT's. So I received a copy of the referral to the ENT dept, but as yet haven't heard anything from them.

We also received a form to fill in, for the Dysphagia Clinic, at the same Children's hospital. So I shall be posting that tomorrow, not sure how long it will take for the appointment to come through.

We're having a bit of a weight issue at the moment, and this is probably going to seem silly, but weight gain has always been a major issue with Michael, he just didn't gain weight....even with a g-peg he still didn't gain weight. Until about a year ago, when he suddenly started to put weight on, which is awesome as far as we're concerned, mind you he was on major calorie intake!!!

So the dietician, concerned that he was putting on too much weight, changed the calorie value of his formula, and since she did that Michael has been losing half a pound a month. At the moment it feels like we are undoing all that hard work to get weight on him. I'm not happy, but I seem to be the only one who's concerned about it!

Oh and to top it all off, with the weight loss seems to have come this!

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