Hugo and Daddy in Covent Garden, London
Hugo and Mummy in Covent Garden, London
Hugo and Mummy posing at playtime
Hugo posing at playtime
Hugo wrapped up in his feeding tube!We have had a busy few weeks (yes again!) of appointments so I am going to do a more detailed update on the specific appointments we have had. I also want to do an up to date summary of Hugo’s condition as I know there are some new ‘followers’!!
Hugo was born with CHARGE syndrome.
Hugo has the following conditions:
Tetralogy of Fallot with Pulmonary atresia - surgically repaired on 6/4/09
Severely visually impaired - bilateral colombomas and left microphthalmia (left side of his face smaller than right)
Hearing impaired - wears hearing aids in both ears, although problems with right ear deformity so aid does not fit very well in right side.
Brain stem hyperplasia - Dandy-walker variant
Bulbar palsy
Single Right Kidney
Right sided facial palsy
Left sided vocal cord palsy
Gastrostomy fed
Unsafe swallow, requiring regular suctioning - queried aspiration risk
Tongue tie
Developmental delay
Gastro-oesophageal reflux
Hyperparathyroidism
Genital abnormalities
After his bout of tonsillitis Hugo responded well to antibiotics and within a few days he was obviously feeling and looking much better.
On 19th April Hugo’s equipment arrived which the Occupational therapist had requested. He now has a bath support which is brilliant and now means I can just about bath him alone with out John having to be there, this is the first time I have been able to do this with Hugo since he was tiny and makes a huge difference. We have also received a special support seat for him which again is brilliant and is already making a big difference especially for feeding.
Hugo had his ophthalmology review on the 21st of April. The eye test went well, Hugo responded for the first time to some of the card test’s they did. He had eye drops in to dilate his pupils, so they can check the retina.
Hugo got a little fed up with the waiting and was trying to go to sleep, they are often running behind on appointments and we were about an hour behind time.
When we got in to see his consultant , she was very happy with how he is using the vision he has got in his right eye. It is almost certain that he has no vision in his left eye.
We also discussed the operation they want to do on his left eye at GOSH, Hugo’s consultant discussed this further with us.
Because his left eye and side of his face is very small they want to put a shield over his left eye to encourage the eye socket to grow at the same rate of the right side of his face. It would mean surgery and we are not happy about this, but she suggests we see what they think at GOS and go from there.
The following day we had an ENT appointment at GOSH. We decided to make a day of it for the first time. We left at 11am and got into London by 1.30pm, a record journey in! we parked up at GOS and then walked down into Covent Garden where we had a lovely walk around and then had a bite to eat in one of the restaurants. The weather was wonderful so we were able to sit outside and relax without worrying about other people coughing or sneezing all over Hugo. Hugo was a complete show off and kept looking around at people who in turn then tried to talk to him and make a fuss of him, he really loves all the attention, especially with the ladies!
We left Covent garden at around 2.30pm as our appointment was at 3.50pm.
Hugo’s ENT consultant is very happy with his progress. One thing that I had noticed was that Hugo has a slightly forked tongue, on mentioning this his consultant had a look and confirmed that he does have a tongue tie, this means the little bit of skin that attaches the tongue to the bottom of the mouth is too tight, Hugo will need to have it snipped off. They wont do this until he has an operation obviously because of the risk of putting him under anaesthetic.
He then asked if we had moved any further forward with Hugo’s feeding. We explained about Hugo’s meeting in the dysphagia clinic with the neurologist and SALT. There was nothing written in Hugo’s medical notes so he could not see what the outcome was or what had been suggested for Hugo. When we explained that we had been told not to pursue any feeding and that we are supposed to stop the water he was very surprised, he asked how many chest infections Hugo has had - none.
He then said that he could not understand the findings of this and that in his own personal opinion, Hugo is showing no real signs of aspirating. He feels that unless we try to get Hugo to eat/drink he will never move forward and he wont overcome his vocal cord palsy. The reason being that the vocal cord works like a muscle and needs to strengthen over time and if Hugo is not eating/drinking it is not going to get used and wont become any stronger.
If we start giving Hugo food and he becomes ill with chest infections then we will know he is not safe, but unless we try we wont ever move forward. He apologised for the different opinions and has told us he will write to the clinic asking for a full details on the findings and suggesting that they inform us and Hugo’s other doctors why they feel so strongly against Hugo eating/drinking.
Hugo’s ENT consultant has been involved in his care since he was a couple of weeks old. It was this particular doctor who thankfully stopped Hugo having a tracheotomy, so we value his opinion and take on board all that he recommends to us.
From now on he will only see us if there is a reason or issue that needs to be looked into, he is happy with how Hugo is progressing and will obviously become involved in his care if needed but we will not have to attended regular clinic. This is great news for us.
After leaving the appointment we had organised to meet with John the Chaplin at GOSH. It was wonderful to see him and we sat and had a cup of tea with him in the chapel. We were having a lovely chat and catch up when Hugo decided to surprise us all with a vomit!! It all happened quite suddenly and poor Hugo was very unsettled by it. Unfortunately our suction unit decided to run out of battery very quickly? Not sure why as it is always on charge, luckily John (Chaplin) was able to pop up to the ward and get us a lead to charge it up and we sat for another half an hour while Hugo settled and we charged the suction. So thanks again John for saving the day!!!
Thankfully once Hugo was in the car he woke and was much better and seemed much happier, and we managed a problem free journey home.
On Monday 26th April Hugo saw his physiotherapist, she is pleased with his progress, he was a little show off for her and as soon as she arrived he decided to back crawl over to her, roll onto his tummy and pull himself into her lap!! As you can imagine she was very impressed by this. He also did two small shuffles forward on his front which was good progress too.
Later in the day we had an audiology appointment for Hugo to have a hearing test, unfortunately I forgot his right hearing aid - not a good start! Hugo was very good though. We could not do left sided responses, because of his lack of vision he does not respond on that side even with the left hearing aid. However he responded very well on the right side (yes even without his hearing aid) It is more a visual response with the left sided hearing, its all a bit complicated with Hugo!! Anyway he responded well for about four goes then got wise to the test and started to look at the jumping monkey. At the same time he had realised that we were clapping him each time he looked at the noise, so now Hugo is clapping himself each time he got it right, we can’t help but laugh at his clever little game and so his hearing test was stopped due to him ‘searching’ for the noise. All very high tech eh!!!
Hugo is currently hearing around 50-60 decibels with his hearing aid in. ideally should be around 30DB, so not great, but the plan is to keep going as we are for now.
They took another mould of both his ears and they are planning on a different way of trying the mould in his right ear to fit it better.
After leaving audiology we took Hugo into the children’s unit to get him checked over, he still has a rash over his arms, legs and face. (he has had this since his tonsillitis) Its definitely not eczema which is good news and we just have to keep putting cream on every day.
Wednesday 5th May, was Hugo’s cardiac review at Hinchingbrooke Hospital with one of the GOS cardiologist’s.
A quick re cap on Hugo’s heart condition and repair.
Hugo’s heart condition is Tetralogy of Fallot with pulmonary atresia and ventricle septical defect. His pulmonary valve was completely blocked stopping blood from flowing to the pulmonary artery into the lungs, he also had four holes in his heart, one very large one between the right and left ventricle and three smaller ones.
When they did his full repair they cut the valve open and put a patch over it to allow the blood to flow properly. They repaired the holes as best as possible only having to leave a very small one open. Because of how his repair was done on the valve he now suffers with pulmonary regurgitation. This means that the blood should be flowing directly into the pulmonary artery and through to the lungs. However because of the patch, Hugo’s blood also flows back from the pulmonary artery into the right ventricle of his heart. This repair was always a short term solution, he will eventually need to have the valve replaced.
Unfortunately our usual cardiologist could not make the appointment but to our delight the replacement was one of the cardiologist’s who had spent some time with Hugo when he needed his second operation. He knows Hugo well and was pleased to see how much he has grown.
He asked us first if we had any concerns. Before Hugo became ill back in March and was admitted we had noticed that some of his chest veins were standing out more, we had mentioned this to Hugo’s cardiologist who felt they could be veins trying to re-route from where he had to have so many lines in when he was so poorly in GOSH.
Since then they have become more noticeable and in the last few weeks he has begun to have very prominent veins showing up on his neck, we mentioned all of this.
After a check over, he listened to his chest, checked his liver and felt the veins, then he did Hugo’s Echo. After also doing a scan on his neck veins he had a chat with us about Hugo.
Hugo’s heart is working well and he is happy with how things are looking, however the regurgitation has increased slightly and because of this the right ventricle has become very slightly more enlarged. The veins in his neck are more open because there is a greater blood flow going to them. This does need to be monitored.
He wants to increase Hugo’s diuretics, this is manly to help keep his fluid retention down and also allow him to have a bit of extra energy as we have also noticed that at times he does pant a bit and become out of breath. His Cardiologist wants him to be able to start crawling (still not there) and doing other activities without getting out of breath and too tired which would put too much pressure on his heart.
Although this is to be expected with Hugo’s heart condition, it is slightly sooner than we had expected. We had always known that he would need to have his valve replaced and our Cardiologist at GOSH had told us that best case scenario would be ten years old and worst case age three, we are looking at possibly four or five. They will not allow Hugo’s right ventricle to become too enlarged as this could lead to heart failure in adulthood, so once he starts to get too much regurgitation then they will think about replacing the valve.
He is happy with Hugo’s overall progress and how bright and alert he is, also compared to the colour he used to be, he was highly impressed with his skin colour and glad to not see the blue/grey boy that he used to be!!
We said our goodbyes and said how lovely it was to see him and left the hospital (after picking up Hugo’s new ear moulds)
By the time I got outside I was shaking and feeling sick. It breaks my heart to think any further ahead than now. I try with all my might not to think about the future and what may or may not happen. It is the only way to keep going and keep my ‘chin up’
John and I had a hug and then discussed the appointment. We try to stay upbeat and not let it get to us, but it is hard and we can’t help worrying about Hugo and his future. We are disappointed that he is already showing signs of RV enlargement, although as always are so thankful that we have the experts opinion and in our eyes the best looking over him. One thing we were told was that we are now in the summer months and that if Hugo can stay well over the next few months it is good for him. Obviously each time he becomes ill with a cold or bug it puts pressure on his heart so the stronger he stays the better and we will do all we can to make sure he is well.
Wednesday night John and I sat down together and had a large glass of wine each (wow not done that for a long time!!) put some music on and just talked about our wonderful little boy. I had a good cry and felt better for it, I don’t see the point in bottling things up and I am so lucky to have such a caring and wonderful husband who is always my shoulder to cry on or the boost I need to pick me back up. I probably don’t always tell him enough, but I love him to bits.
Thursday Hugo woke with his right retina fully dilated?? As we were at GOSH for ophthalmology we decided to see what they said rather than contacting HB.
Friday 7th we were again in London, our first appointment was at 1.40pm, so we left home at 10am. We got to GOSH by 12.30pm which was a great run.
When we were in GOSH we bought Hugo a cheap buggy with a car seat for pushing him around. We have never really used it since coming home and while sorting some bits to move we decided to take it with us and give it to Ladybird ward where Hugo spent so long. So we took it up and they were delighted with it, but more delighted to see our little boy. We were lucky enough to see lots of the nurse’s who cared for Hugo and some of them have not seen him since we left. Typically he showed off blowing raspberries and smiling for all, He really did make us proud!
Unfortunately our appointment did not go so well, Hugo fell asleep just before the appointment as he had not slept all day and it was ridiculously hot. To our dismay it was not an appointment to see the head consultant but a routine eye test to check his vision, the same as we had locally only three weeks ago!! Not amused!
We got into see the eye doctor and we explained about his eye, he was not really concerned and just did some eye checks, waking Hugo up in the process. He then said we needed to come back and see the consultant about having the eye surgery and when we explained that we were unhappy with the idea of it, he basically cast aside our concerns and said that there was no hope of vision in the left eye. We asked some more about the surgery and are led to believe that they would put a shield over Hugo’s left eye which would encourage the eye socket to grow. However it would mean a general anaesthetic to do the initial surgery and then he would need a new shield putting in every 6-8 months, again requiring a GA. This would continue until he was around ten. John and I both feel strongly that although this would make Hugo’s face look more symmetrical #, he really has enough to deal with on a day to day basis without having to have more surgery and discomfort. We are now having to ask the opinions of Hugo’s Paediatrician and Cardiologist.
We left feeling quite annoyed at the way the appointment was dealt with and that we have travelled Hugo all the way down to London when he really didn’t need to be seen.
Hugo was very clingy with John and didn’t quite seem himself, we assumed this was because he was tired and not in his usual routine.
After leaving the hospital we met up with Matt, Keeley and Betty who were all looking very well. We went for a coffee and catch up and it was great to see them all.
We left London and were home by about 8.30pm.
Saturday morning Hugo woke at 6am with a very rattly cough and a lot of secretions in his upper airway. He was pale and had a high temperature and the pupil in his right eye was still dilated. He only managed 75mls of his first feed and we decided to ring our local GP to try and get an appointment as we felt that we should use them instead of taking him down to the hospital. They were closed except for emergency’s and I couldn’t get through, so we decided to see how he went. At 2pm he had got no better so I rang through to Holly ward who said they would get the doctor to ring us back.
Five minutes later Hugo’s paediatrician rang back (she was on call) I went over how he was and she suggested that we bring him in for a check.
We got in at 4pm, temp still high, but the little monkey literally took one look at the nurse and started to laugh and jump around in his cot as if nothing was up!! Obviously we were pleased to see this, but worried we were wasting the doctors time.
Hugo was fully checked over, his chest was all clear apart from the upper airway secretions, but she was concerned about his eye. Although he is showing no other signs of neurological problems there is a concern as to why the pupil has become so enlarged. She is going to speak to his ophthalmologist on Monday morning and see what she thinks it could be, but there is a chance he may need an MRI scan to check that his brain is ok.
We left with antibiotics and got home by 7pm, as soon as we arrived Hugo’s tummy became very upset so we started the antibiotics straight away. He remained unsettled and eventually went to bed at 8.30pm, I followed suit as it had been a long couple of days and I was also very tired. John was due to work but decided a the very last minute that he really didn’t want to risk leaving me at home with Hugo with him being unwell. I woke at 11pm to put on Hugo’s feed and was very surprised to find John still at home!
Hugo has managed through the weekend and is a bit better but still not 100%, hopefully once he has had the course of antibiotics he will be much better. His eye has returned to normal, we are uncertain as to why the pupil dilated like it did, and we are just to keep a close eye on him (excuse the pun!!) they wont do an MRI just yet unless he shows any other signs of problems.
Right sided facial palsy
Left sided vocal cord palsy
Gastrostomy fed
Unsafe swallow, requiring regular suctioning - queried aspiration risk
Tongue tie
Developmental delay
Gastro-oesophageal reflux
Hyperparathyroidism
Genital abnormalities
After his bout of tonsillitis Hugo responded well to antibiotics and within a few days he was obviously feeling and looking much better.
On 19th April Hugo’s equipment arrived which the Occupational therapist had requested. He now has a bath support which is brilliant and now means I can just about bath him alone with out John having to be there, this is the first time I have been able to do this with Hugo since he was tiny and makes a huge difference. We have also received a special support seat for him which again is brilliant and is already making a big difference especially for feeding.
Hugo had his ophthalmology review on the 21st of April. The eye test went well, Hugo responded for the first time to some of the card test’s they did. He had eye drops in to dilate his pupils, so they can check the retina.
Hugo got a little fed up with the waiting and was trying to go to sleep, they are often running behind on appointments and we were about an hour behind time.
When we got in to see his consultant , she was very happy with how he is using the vision he has got in his right eye. It is almost certain that he has no vision in his left eye.
We also discussed the operation they want to do on his left eye at GOSH, Hugo’s consultant discussed this further with us.
Because his left eye and side of his face is very small they want to put a shield over his left eye to encourage the eye socket to grow at the same rate of the right side of his face. It would mean surgery and we are not happy about this, but she suggests we see what they think at GOS and go from there.
The following day we had an ENT appointment at GOSH. We decided to make a day of it for the first time. We left at 11am and got into London by 1.30pm, a record journey in! we parked up at GOS and then walked down into Covent Garden where we had a lovely walk around and then had a bite to eat in one of the restaurants. The weather was wonderful so we were able to sit outside and relax without worrying about other people coughing or sneezing all over Hugo. Hugo was a complete show off and kept looking around at people who in turn then tried to talk to him and make a fuss of him, he really loves all the attention, especially with the ladies!
We left Covent garden at around 2.30pm as our appointment was at 3.50pm.
Hugo’s ENT consultant is very happy with his progress. One thing that I had noticed was that Hugo has a slightly forked tongue, on mentioning this his consultant had a look and confirmed that he does have a tongue tie, this means the little bit of skin that attaches the tongue to the bottom of the mouth is too tight, Hugo will need to have it snipped off. They wont do this until he has an operation obviously because of the risk of putting him under anaesthetic.
He then asked if we had moved any further forward with Hugo’s feeding. We explained about Hugo’s meeting in the dysphagia clinic with the neurologist and SALT. There was nothing written in Hugo’s medical notes so he could not see what the outcome was or what had been suggested for Hugo. When we explained that we had been told not to pursue any feeding and that we are supposed to stop the water he was very surprised, he asked how many chest infections Hugo has had - none.
He then said that he could not understand the findings of this and that in his own personal opinion, Hugo is showing no real signs of aspirating. He feels that unless we try to get Hugo to eat/drink he will never move forward and he wont overcome his vocal cord palsy. The reason being that the vocal cord works like a muscle and needs to strengthen over time and if Hugo is not eating/drinking it is not going to get used and wont become any stronger.
If we start giving Hugo food and he becomes ill with chest infections then we will know he is not safe, but unless we try we wont ever move forward. He apologised for the different opinions and has told us he will write to the clinic asking for a full details on the findings and suggesting that they inform us and Hugo’s other doctors why they feel so strongly against Hugo eating/drinking.
Hugo’s ENT consultant has been involved in his care since he was a couple of weeks old. It was this particular doctor who thankfully stopped Hugo having a tracheotomy, so we value his opinion and take on board all that he recommends to us.
From now on he will only see us if there is a reason or issue that needs to be looked into, he is happy with how Hugo is progressing and will obviously become involved in his care if needed but we will not have to attended regular clinic. This is great news for us.
After leaving the appointment we had organised to meet with John the Chaplin at GOSH. It was wonderful to see him and we sat and had a cup of tea with him in the chapel. We were having a lovely chat and catch up when Hugo decided to surprise us all with a vomit!! It all happened quite suddenly and poor Hugo was very unsettled by it. Unfortunately our suction unit decided to run out of battery very quickly? Not sure why as it is always on charge, luckily John (Chaplin) was able to pop up to the ward and get us a lead to charge it up and we sat for another half an hour while Hugo settled and we charged the suction. So thanks again John for saving the day!!!
Thankfully once Hugo was in the car he woke and was much better and seemed much happier, and we managed a problem free journey home.
On Monday 26th April Hugo saw his physiotherapist, she is pleased with his progress, he was a little show off for her and as soon as she arrived he decided to back crawl over to her, roll onto his tummy and pull himself into her lap!! As you can imagine she was very impressed by this. He also did two small shuffles forward on his front which was good progress too.
Later in the day we had an audiology appointment for Hugo to have a hearing test, unfortunately I forgot his right hearing aid - not a good start! Hugo was very good though. We could not do left sided responses, because of his lack of vision he does not respond on that side even with the left hearing aid. However he responded very well on the right side (yes even without his hearing aid) It is more a visual response with the left sided hearing, its all a bit complicated with Hugo!! Anyway he responded well for about four goes then got wise to the test and started to look at the jumping monkey. At the same time he had realised that we were clapping him each time he looked at the noise, so now Hugo is clapping himself each time he got it right, we can’t help but laugh at his clever little game and so his hearing test was stopped due to him ‘searching’ for the noise. All very high tech eh!!!
Hugo is currently hearing around 50-60 decibels with his hearing aid in. ideally should be around 30DB, so not great, but the plan is to keep going as we are for now.
They took another mould of both his ears and they are planning on a different way of trying the mould in his right ear to fit it better.
After leaving audiology we took Hugo into the children’s unit to get him checked over, he still has a rash over his arms, legs and face. (he has had this since his tonsillitis) Its definitely not eczema which is good news and we just have to keep putting cream on every day.
Wednesday 5th May, was Hugo’s cardiac review at Hinchingbrooke Hospital with one of the GOS cardiologist’s.
A quick re cap on Hugo’s heart condition and repair.
Hugo’s heart condition is Tetralogy of Fallot with pulmonary atresia and ventricle septical defect. His pulmonary valve was completely blocked stopping blood from flowing to the pulmonary artery into the lungs, he also had four holes in his heart, one very large one between the right and left ventricle and three smaller ones.
When they did his full repair they cut the valve open and put a patch over it to allow the blood to flow properly. They repaired the holes as best as possible only having to leave a very small one open. Because of how his repair was done on the valve he now suffers with pulmonary regurgitation. This means that the blood should be flowing directly into the pulmonary artery and through to the lungs. However because of the patch, Hugo’s blood also flows back from the pulmonary artery into the right ventricle of his heart. This repair was always a short term solution, he will eventually need to have the valve replaced.
Unfortunately our usual cardiologist could not make the appointment but to our delight the replacement was one of the cardiologist’s who had spent some time with Hugo when he needed his second operation. He knows Hugo well and was pleased to see how much he has grown.
He asked us first if we had any concerns. Before Hugo became ill back in March and was admitted we had noticed that some of his chest veins were standing out more, we had mentioned this to Hugo’s cardiologist who felt they could be veins trying to re-route from where he had to have so many lines in when he was so poorly in GOSH.
Since then they have become more noticeable and in the last few weeks he has begun to have very prominent veins showing up on his neck, we mentioned all of this.
After a check over, he listened to his chest, checked his liver and felt the veins, then he did Hugo’s Echo. After also doing a scan on his neck veins he had a chat with us about Hugo.
Hugo’s heart is working well and he is happy with how things are looking, however the regurgitation has increased slightly and because of this the right ventricle has become very slightly more enlarged. The veins in his neck are more open because there is a greater blood flow going to them. This does need to be monitored.
He wants to increase Hugo’s diuretics, this is manly to help keep his fluid retention down and also allow him to have a bit of extra energy as we have also noticed that at times he does pant a bit and become out of breath. His Cardiologist wants him to be able to start crawling (still not there) and doing other activities without getting out of breath and too tired which would put too much pressure on his heart.
Although this is to be expected with Hugo’s heart condition, it is slightly sooner than we had expected. We had always known that he would need to have his valve replaced and our Cardiologist at GOSH had told us that best case scenario would be ten years old and worst case age three, we are looking at possibly four or five. They will not allow Hugo’s right ventricle to become too enlarged as this could lead to heart failure in adulthood, so once he starts to get too much regurgitation then they will think about replacing the valve.
He is happy with Hugo’s overall progress and how bright and alert he is, also compared to the colour he used to be, he was highly impressed with his skin colour and glad to not see the blue/grey boy that he used to be!!
We said our goodbyes and said how lovely it was to see him and left the hospital (after picking up Hugo’s new ear moulds)
By the time I got outside I was shaking and feeling sick. It breaks my heart to think any further ahead than now. I try with all my might not to think about the future and what may or may not happen. It is the only way to keep going and keep my ‘chin up’
John and I had a hug and then discussed the appointment. We try to stay upbeat and not let it get to us, but it is hard and we can’t help worrying about Hugo and his future. We are disappointed that he is already showing signs of RV enlargement, although as always are so thankful that we have the experts opinion and in our eyes the best looking over him. One thing we were told was that we are now in the summer months and that if Hugo can stay well over the next few months it is good for him. Obviously each time he becomes ill with a cold or bug it puts pressure on his heart so the stronger he stays the better and we will do all we can to make sure he is well.
Wednesday night John and I sat down together and had a large glass of wine each (wow not done that for a long time!!) put some music on and just talked about our wonderful little boy. I had a good cry and felt better for it, I don’t see the point in bottling things up and I am so lucky to have such a caring and wonderful husband who is always my shoulder to cry on or the boost I need to pick me back up. I probably don’t always tell him enough, but I love him to bits.
Thursday Hugo woke with his right retina fully dilated?? As we were at GOSH for ophthalmology we decided to see what they said rather than contacting HB.
Friday 7th we were again in London, our first appointment was at 1.40pm, so we left home at 10am. We got to GOSH by 12.30pm which was a great run.
When we were in GOSH we bought Hugo a cheap buggy with a car seat for pushing him around. We have never really used it since coming home and while sorting some bits to move we decided to take it with us and give it to Ladybird ward where Hugo spent so long. So we took it up and they were delighted with it, but more delighted to see our little boy. We were lucky enough to see lots of the nurse’s who cared for Hugo and some of them have not seen him since we left. Typically he showed off blowing raspberries and smiling for all, He really did make us proud!
Unfortunately our appointment did not go so well, Hugo fell asleep just before the appointment as he had not slept all day and it was ridiculously hot. To our dismay it was not an appointment to see the head consultant but a routine eye test to check his vision, the same as we had locally only three weeks ago!! Not amused!
We got into see the eye doctor and we explained about his eye, he was not really concerned and just did some eye checks, waking Hugo up in the process. He then said we needed to come back and see the consultant about having the eye surgery and when we explained that we were unhappy with the idea of it, he basically cast aside our concerns and said that there was no hope of vision in the left eye. We asked some more about the surgery and are led to believe that they would put a shield over Hugo’s left eye which would encourage the eye socket to grow. However it would mean a general anaesthetic to do the initial surgery and then he would need a new shield putting in every 6-8 months, again requiring a GA. This would continue until he was around ten. John and I both feel strongly that although this would make Hugo’s face look more symmetrical #, he really has enough to deal with on a day to day basis without having to have more surgery and discomfort. We are now having to ask the opinions of Hugo’s Paediatrician and Cardiologist.
We left feeling quite annoyed at the way the appointment was dealt with and that we have travelled Hugo all the way down to London when he really didn’t need to be seen.
Hugo was very clingy with John and didn’t quite seem himself, we assumed this was because he was tired and not in his usual routine.
After leaving the hospital we met up with Matt, Keeley and Betty who were all looking very well. We went for a coffee and catch up and it was great to see them all.
We left London and were home by about 8.30pm.
Saturday morning Hugo woke at 6am with a very rattly cough and a lot of secretions in his upper airway. He was pale and had a high temperature and the pupil in his right eye was still dilated. He only managed 75mls of his first feed and we decided to ring our local GP to try and get an appointment as we felt that we should use them instead of taking him down to the hospital. They were closed except for emergency’s and I couldn’t get through, so we decided to see how he went. At 2pm he had got no better so I rang through to Holly ward who said they would get the doctor to ring us back.
Five minutes later Hugo’s paediatrician rang back (she was on call) I went over how he was and she suggested that we bring him in for a check.
We got in at 4pm, temp still high, but the little monkey literally took one look at the nurse and started to laugh and jump around in his cot as if nothing was up!! Obviously we were pleased to see this, but worried we were wasting the doctors time.
Hugo was fully checked over, his chest was all clear apart from the upper airway secretions, but she was concerned about his eye. Although he is showing no other signs of neurological problems there is a concern as to why the pupil has become so enlarged. She is going to speak to his ophthalmologist on Monday morning and see what she thinks it could be, but there is a chance he may need an MRI scan to check that his brain is ok.
We left with antibiotics and got home by 7pm, as soon as we arrived Hugo’s tummy became very upset so we started the antibiotics straight away. He remained unsettled and eventually went to bed at 8.30pm, I followed suit as it had been a long couple of days and I was also very tired. John was due to work but decided a the very last minute that he really didn’t want to risk leaving me at home with Hugo with him being unwell. I woke at 11pm to put on Hugo’s feed and was very surprised to find John still at home!
Hugo has managed through the weekend and is a bit better but still not 100%, hopefully once he has had the course of antibiotics he will be much better. His eye has returned to normal, we are uncertain as to why the pupil dilated like it did, and we are just to keep a close eye on him (excuse the pun!!) they wont do an MRI just yet unless he shows any other signs of problems.
Hugo is an inspirational little boy, and you and John are wonderful parents. Hugo's story is emotional and heart breaking, but also an example of perseverance in the face of adversity. Hugo is an amazing little boy x
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