Not a brilliant week all in all, have definately had better

I will start with Monday........

Brett was seen by the ENT Doctor, and all appears to be ok in that department, so that was one bit of good news, he will have follow ups in the future and a hearing test between 6 and 9 months, but for now he seems ok.

Brett was seen by the Paed Doctor, and the result from the thyroid test was back and showed that TSH was elevated.  Brett will have to have it re-tested in a couple of months and also have the T4 tested at the same time, I will discuss this further with the doctors when the time comes.

Brett's Paediatric Doctor has now discharged him and referred him instead to a Doctor who is apparantly more specialised, so yet another doctor to meet once the appointment comes through.

Brett was also seen by the dietician who is going to change Brett's milk again to an even higher caloried one, she also wants to add something to it that will increase the calories too.  She also asked us to increase the volume of feed given at each feed by about 5 - 10mls and see if he tolerated it.  He didn't.  By wednesday he was retching and gagging, and I decreased it again (I even had to take it down to 90ml instead of 100ml to eventually settle him!) and by Thursday morning even though he was now back having the 100ml that he should have been tolerating, he vomitted quite a bit of his feed back up.  This was the last thing I wanted to happen today because he was having his echo done under sedation.

One really good thing about Monday is that Brett's Respiratory Nurse is going to try and sort out getting Brett some physio at long last at the hospital, while he's waiting for the community ones, what a star!   Also, Brett's Community nurse is on the case too and has written a letter, so surely it won't be much longer before he gets some physio!??

Thursday..........

Today Brett went to the Children's Hospital to have a detailed Echo done under sedation.  It was scarey because I've never seen him so out of it before, even when he's asleep he is such a light sleeper.

The result of the scan showed that the hole at the bottom of Brett's heart is larger than was originally thought, and I think they said that there was a problem with the shunting or blood flow.  To be honest it all became a bit of a blur and was a lot to take on board.  There is going to be a meeting tomorrow but Brett's Cardiologist has said that he is going to recommend that a Catheter test is done asap.  This is the test that I didn't want Brett to have to have because it carries some risk, but we understand that it now looks unavoidable.   Depending on the outcome of the catheter test Brett may have to have pulmonary artery banding (this involves an operation) but we're trying not to look too far ahead at the moment.  There was a Cardiac liasion nurse there today and she will be phoning us tomorrow to arrange to come to the house next week to discuss Brett's diagnosis and treatment plan in full, so we will get to understand it more and to ask questions.

Brett's sats was done today and was on the low side (one side was in the 80s and the other side was in the 90s) and his cardiologist has suggested I give him extra oxygen during the day when I can.  I am going to speak to the respiratory nurse tomorrow as well to bring her up to date.

We should get a phone call tomorrow with a date for the catheter test.

I have such a splitting headache, it's so much to take on board and I'm so scared for Brett, we love him so much and just couldn't bear it if anything happened.  Please say a prayer for him.

Brett was seen by the Cardiologist on Thursday, and he has to have an echo done under sedation next week (Thursday 5th July).  The reason for doing this is because they are trying to make sure that the pulmonary hypertension is not being caused by the holes in his heart.  If they still can't find out the information they need from the scan, then they may have to do a heart catheter procedure, but they want to avoid that if they can because of the risk it carries.  They would only do it as a last resort, and hopefully it won't be necessary.  Brett has an appointment on Monday with ENT so we will find out if there is anything else that is contributing to his swallowing difficulties.

We have bought a caravan and are busy getting it ready for the summer, we aim to spend the whole of the school holidays there, all being well. Brett's respiratory Nurse is trying to arrange for there to be an oxygen supply at the caravan too which is brilliant as it will save us taking everything with us.  It's a 3 bedroom static and it's sited on a quiet caravan site in Skegness.  It's about 5 minutes walk from the beach, lots of fresh air for Brett and Garry, so it should be wonderful!!  Here's some pictures we took when we went last weekend.....

Very quick update, I need to go to bed so have only got a few minutes!  Brett was unwell last Sunday and developed a rash and a high temperature.  After an overnight stay at the hospital his temperature had improved a little and it looked like it was a virus of some sort, so Brett didn't need any antibiotics or treatment and was discharged home.  He was seen by a very nice doctor who remembered him from the Neonatal Unit!  The doctor also took some blood for a thyroid test that I asked for, so the results for that should be available for his next hospital appointment.  

Brett has been out of sorts all week though, and his temperature is still up and down, but at least the rash has disappeared so that's good news.  We cancelled the Cardiac appointment he should of had because of him being unwell and that has been arranged for next week instead.  His speech and language assessment has also been rearranged too, for when he is feeling a little happier.

He's tolerating the oxygen therapy well now and I'm managing to get the nasal specs to stay on better, thanks to a little tip from Brett's respiratory nurse we now get him to have them on without a struggle!

Over the past month or so we have been looking into Targeted Nutritional Intervention (TNI) as an alternative therapy for Brett.  He is still struggling with his weight gain, he still has reflux bad enough to make him struggle to take his milk properly through the tube, (although he isn't vomitting like he used to any more which is a good thing) and we feel that he isn't progressing as well as he could be.  He's five months old now and is desperate to have physio (which we are still waiting for) for his poor muscle tone.  We just feel that we have to do something to try to help him.  We're aware that there hasn't been enough research done on TNI and the studies available are limited, the DSRF are funding a study into it starting this year, but it will be two plus years before any results are available and in the mean time Brett is in his important growth and development years and needs help now.  So, after a lot of thought and lots of talking and reading we have decided to go ahead with it.  We have ordered the Euro-TNS and will be discussing it with Brett's Paed before commencing him on it.  More information on TNI can be found here and here

I came across another poem on an email list last week, I love this one...........

I am the "special needs" child.
I am your teacher.
If you allow me, I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust and my total dependency.
I teach you about how precious this life is,
And about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all, I teach you hope and faith.
~Author Unknown~

Brett has been seen by the respiratory doctor about his Pulmonary Hypertension and has had a sleep study done overnight.  He has now been started on oxygen therapy overnight to help with the pulmonary hypertension, which we hope will ease the strain on his heart and make him less breathless.  Brett is due to see the Cardiologist again this month and now he has been seen by the respiratory doctor they will probably go ahead with the heart catheter study to find out exactly what is happening, how much of a problem the holes are and what the pressure is.

We started the oxygen therapy 2 nights ago after they delivered the compressor, and Brett doesn't like it, lol.  He has been pulling and pushing at the nasal specs just like he does with his feeding tube, so the respiratory nurse is coming out to visit on Tuesday and is going to bring some different masks that we can try instead.  Meanwhile we are letting Brett have a practice with the nasal specs during the daytime to try to help him get used to them, rather than just waiting till bedtime when he's tired anyway.

Brett is still having the high energy formula and is slowly progressing with his weight, he is now having up to 2 teaspoons of baby rice per day and is doing well, he pulls some very funny faces at the taste tho, bless him!  I will have to try to catch it with the camera.

Hasn't Brett got just about the loveliest smile ever!  I look at him when he smiles and I could just munch him to bits!!