* Author Topic: Diary of a very happy mammy of 3 miracles  (Read 22403 times)

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Offline Shamrock.

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« Reply #40 on: 2/09/18, 13:35 »
Sunday 2nd September 2018

J is 6 Weeks 6 Days Old
Day 14 of Js hospital stay

J spent 2 nights in intensive care before he was moved back to the Nazareth ward. Thankfully he was able to be weaned off the ventilator and breathe on his own the day after the operation. They were also able to take him off the sedation medication.

He is back on the ward since Friday evening and the first night he was very unsettled because his throat is sore but they said they could not give him morphine anymore so he is just on paracetamol and clonadene pain killer now.

He is being fed through a tube in his nose every 3 hours. They started on very small amounts and slowly increased it and today he is up to taking 70mls every 3 hours. Thankfully he has been able to tolerate his feeds without getting sick - he is on reflux medication to prevent that. He is more settled since his feed amount has been increased. He has to be suctioned before each feed to get rid of mucus in his nose and throat.

The ENT surgeon has said that he is to be reviewed by the speech and language therapist and if she agrees they can try bottle feeding him again on Monday.

The surgeon also said that they will do another sleep study on him Monday or Tuesday night. I think from watching his oxygen monitor that he is not having as many oxygen drops (desaturations) as before his surgery but he gave me a bit of fright earlier today when he had about 5 desaturations in a row when he was in a deep sleep.

I was absolutely wrecked tired on Friday evening because I had driven up and down between the hospital and home 4 days in a row and it is over an hours drive each way. I had to go home on Tuesday to sort out Ps uniform and books etc for primary school. Then on Wednesday night after J was out of surgery and I had seen him in the intensive care unit I drove home again so that I would be at home to bring P to school for her first day on Thursday and to bring R to preschool (He started back Wed). I came back to the hospital Thurs evening to see J in intensive care then I drove home again on Thurs night to be home on Friday morning to bring P and R to school again and to collect them. I drove back to the hospital late Friday night and swopped over with DH and I've been here since then. I've still got my room in the parents accommodation.

It's lonely being here on my own. I really miss DH, P and R and normal family life.  A few people have said that I'm a strong woman because I haven't visibly fallen to pieces over all this but the truth is that I have secretly felt very overwhelmed many times and I have just wanted to climb into bed and hide under the duvet crying but much as I want to do that I can't... I have to carry on and be there for J, P, R and DH. I have to try and provide as much normality as possible at home for P and R, be as supportive as possible to DH so that he can keep his job going and be there to comfort J as much as I can. There is no room for falling to pieces  :-\

Even though we have been unlucky lately. I am counting my blessings that, please God, J will be well enough to go home soon. This is a hospital for sick children and I've gotten talking to a few different parents with very sad stories of children that may never leave the hospital alive  :'(

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    Offline Shamrock.

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    « Reply #41 on: 2/09/18, 21:58 »
    Update

    Still Day 14 of Js hospital stay

    One step forward two steps back  :(
    J was recovering great yesterday and he was very settled. This morning he was doing good too except for having developed a terrible barking cough and sounding very hoarse. During the day he started having quiet a few desaturations. At one stage I noticed he had a few desaturations in a row and he looked like he was struggling to breathe easily so the nurse looking after him called a doctor to come to examine him. The doctor said he was fine just sore but then about an hour later the same thing happened again with him having a number of desaturations together and working hard to breathe and his heart-rate was high so the nurse called for the doctor to come again.

    This time the doctor put him on oxygen and did blood tests and organised for a chest X-ray to be done on him in his room using a mobile X-ray machine. The chest X-ray and blood tests came back clear for infection so they decided that his throat is very sore and he needs stronger pain medication. They have put him back on morphine, completly stopped his feeds and put him on an iv drip for fluids for the night  :-\

    They also called for the ENT registrar on call to come to examine him. While the registrar was in the middle of examining J there was drama on the ward because one of the babies in another room stopped breathing very briefly, an alarm sounded and every nurse and doctor on the ward ran like crazy to the room. Thankfully the baby was ok but everyone in the place including me got a fright  :o

    No-one has told me yet what the registrar recommended  ???

    Offline Shamrock.

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    « Reply #42 on: 4/09/18, 22:00 »
    Tuesday 4th September 2018

    J is 7 Weeks 1 Day Old
    Day 16 of Js hospital stay

    Iím starting to getting really fed up of this place now but we are stuck here for a while yet  :-\

    J now has a viral infection in his throat/nose so it has set his recovery back a bit. They restarted his tube (ng) feeds yesterday, he is still on oxygen through his nose and he was on the iv drip for fluids until tonight.

    The speech and language therapist has been to see him a couple of times in the last few days and under her guidance and watchful eye I tried him today with his first bottle feed since the surgery but we had to stop after 30mls coz he was coughing and spluttering too much. We are going to try again tomorrow with a slower flow teat on the bottle.

    The respiratory team consultant said that they have to wait for Js viral infection to clear up before they will do the repeat sleep study on him. So it is a lot of waiting...In here you have to have a lot of patience and take one day at a time. 

    DH brought P and R to visit us yesterday. We went out for a carvery meal in a nearby pub while the nurses looked after J. It was really good to see the kids and DH...Iím missing them a lot.

    I canít hold J much at the moment because of all the different wires attached to him for various monitors and the iv drip and feeding equipment. I miss him too even though heís right here. I miss just holding him and cuddling him the way I did before he ended up in hospital  :-\

    Itís lonely here and Iíve had very few visitors...I suppose everyone is too busy with work and their own family commitments and the hospital is too far from home to make it easy to just pop in. I have made friends here with a really nice woman from Serbia named Alexandra. I got talking to her the first day we got here and we clicked. We've had plenty of chats and cups of coffee together since. Her little boy has similar issues to J and also had throat surgery. He has been an in-patient here since he was 5 days old and he's almost 3 months old now  :o

    Offline Shamrock.

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    « Reply #43 on: 5/09/18, 22:01 »
    Wed 5th Sept 2018

    J is 7 Weeks 2 Days Old
    Day 17 of Js hospital stay

    I was down in the dumps yesterday but I slept well last night and I woke up in much better form today.

    J seemed much brighter today too so I think his viral infection is starting to clear up.

    We tried another bottle feed with him today using a slow flow size one teat on the bottle but he only managed to take 10mls even though he seemed to be sucking like anything. He was exhausted after the effort of only taking that much and started coughing and sputtering again so we had to stop. The speech and language therapist said we need to wait now until he is completely off oxygen before we can try again  :-\

    The respiratory team consultant also said today that they won't do a sleep study until J is completely off oxygen so there is a lot riding on him getting off it. If he can manage to go without it then it will be a big step nearer to going home.

    This evening the nurse turned off the oxygen to see how J would get on without it and he did really well. She said he needed to stay above 94 on the oxygen monitor and he did it. He was mostly hovering around 97  :) Yesterday when they tried turning it off he was dropping to around 91 or 92 so today's levels are a good improvement. Fingers crossed he can keep it up overnight tonight  ^pray^

    My friend G came to see me today and the nurses minded J while we went out to a coffee shop down the street from the hospital. It was really nice of her to make the effort to visit as she had to get a train and a bus to get here.

    P started back to ballet yesterday and both P and R started in gymnastics this afternoon. I'm missing out on all the fun  :-\

    Offline Shamrock.

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    « Reply #44 on: 9/09/18, 07:50 »
    Sunday 9th September 2018

    P is 5 Years, 6 Months Old
    R is 4 Years 5 1/2 Minths Old
    J is 7 Weeks 6 Days Old

    Day 21 of Js hospital stay

    After my last post J had to be put back on oxygen during the night on Wednesday night because of desaturations. They left him on it all day Thurs and Thurs night and then tried turning it off again Friday morning. He was sent to the x-ray dept for a chest x-ray on Thurs and from that and because he was still very congested with mucus they decided that he still has the upper respiratory viral infection.

    So Friday morning he did quiet well without the oxygen when he was awake but as soon as he fell asleep the oxygen monitor was beeping again as his oxygen levels were falling below 90 so the oxygen was turned on yet again. The respiratory team consultant said that it is taking J longer to recover from the surgery than expected.

    On Friday evening the nurse noticed that J was working hard to breathe even with oxygen on so she called for the SHO who in turn called for a registrar to examine him. They increased his oxygen amount and did another chest X-ray ...this time in his room...they also did a blood test to check the carbon dioxide levels in his blood. The blood test showed his carbon dioxide was 8 when it should have been 5 or less so he was then attached to a high flo oxygen machine to give him extra support and they decided that he has broncholitis.

    It will take J at least another few days to recover from the broncholitis/ upper respiratory infection and he canít try drinking a bottle or get a sleep study done until then so i think it will be at least another two weeks or more before he will be allowed home  :-\

    With J being in hospital and either myself or DH having to stay with him all the time the impact on our normal family life is really starting to take its toll on everyone now especially P and R.

    Update 9:30pm
    Iím back in the hospital now with J after being home with P and R since yesterday morning. DH came up here Friday evening as our friend E offered to take P and R to her house overnight. So myself and DH had a night together here Friday night then Saturday morning I drove home, spent one night at home in my own bed and I came back this evening and swoped over with DH so that he can go to work tomorrow.

    I noticed when I was at home that R is really acting up and doing and saying naughty things deliberately. Itís not like him at all to act that way so I know it is his way of reacting to the recent upheaval to our family life. Last night was the first night in over a week I was home so the poor little pet is all out of sorts. It breaks my heart that he is upset because heís such a sensitive kind hearted little boy  :-\

    P is also affected by everything, she didnít leave me out of her sight when I was at home (neither did R) and she told me she wants me, DH, her, R and J to be back together at home again. She asked a few times when will J be home and what are the doctors doing to make him better. She also asked me what do I do all day when Iím at the hospital and told me she misses me when Iím not at home  :-\

    I felt really sad driving back up to the hospital.  I really want to be at home with P and R giving them all the love and attention they need and sorting out all the necessary practical household stuff but I have to be here for J  :-\ Hopefully J will start to make big improvements soon  ^pray^

    Offline Shamrock.

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    « Reply #45 on: 11/09/18, 23:31 »
    Tues 11th Sept 2018

    J is 8 Weeks 1 Day Old
    Day 23 of Js hospital stay

    Today was the first day that J managed to go from 9am to 9pm without oxygen support. He did have 4 or 5 fleeting desaturations during the 12 hours but that was really good compared to the previous days so I am happy that he is finally showing progress :) He still has the viral infection but I think it is finally starting to subside  :)

    His oxygen had to be turned on again around 9pm because he had a couple of desaturations in a row when he was in a deep sleep. A nurse told me that it is common for that to happen with babies who have similar issues to J.  It usually takes them longer to kick the oxygen support at night.

    I tried again to give him a bottle feed today with the speech and language therapist watching and again he only managed 30mls before we had to stop because he was coughing and sputtering and exhausted from the effort. We are going to try again on Thursday. They don't push him too much to drink the bottle encase some of the milk goes down the wrong way and into his lungs  :-\

    Despite not getting bottles orally J is growing well and putting on weight because he is being ng tube fed 90mls every 3 hours. He was weighed yesterday and he is now 4.72kg (10lbs 6oz)  :) I had to move him into 3-6mths old babygros yesterday as the 0-3mths ones were gone too small on him! He is in Size 2 nappies  :)

    The last few days about an hour or so after his feeds J keeps waking up bawling crying every few minutes. He wakes up bawling, I settle him down, he goes back to sleep, he wakes up bawling again..this happens over and over again until he is given paracetamol or clonadene :-\ So this evening the nurse said she thinks he has silent reflux which is very common in babies with laryngomalacia. He is already on ranitidene to help with reflux even though he hadn't shown signs of it up to now so she will ask the doctors to up his dosage of that tomorrow. Poor little pet  :-\

    I finally went for my 6 week post natal check up with Dr M today. With everything going on with J I couldn't go two weeks ago when I was actually 6 weeks after delivery. Anyhow I spoke to Dr M about the postpartum cardiomyopathy episode I suffered (She was aware of it already because my local hospital had phoned her when I was an in-patient there). She advised I should keep my next appointment with the private cardiologist which is scheduled for 27th Sept. She checked my c-section scar and said it has healed up nicely. She also advised that even though we had needed IVF for Js pregnancy, myself and DH should use condoms when doing the deed if we are finished our family ???

    I must admit I had a slight pang of wanting to be pregnant again when I was sitting in Dr Ms waiting room as I have so many happy memories of being there while pregnant with P, R and J but with everything misfortunate that has happened to myself and J in the last few months I know that we are definitely finished our family and when we get through this current tribulation I just want to concentrate on having a normal happy family life with DH and the 3 children we are so lucky to have.

    Offline Shamrock.

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    « Reply #46 on: 12/09/18, 23:27 »
    Wednesday 12th Sept 2018

    J is 8 Weeks 2 Days Old
    Day 24 of Js hospital stay

    Today was a big day for me and J  ???

    The respiratory team consultant SJ came to see J this morning and while she was there J was asleep and his breathing was quite laboured which it often is when he's in a deep sleep. He had a noticeable tug indent in his chest and at his neck with every breath and you could hear his stridor.

    The consultant examined J and said that she knows by looking at him, without having to do another sleep study on him, that he needs to be on a cpap machine when he is asleep at night  :-\

    She said they would organise for J to start on the cpap tonight and that I need to learn how to use the machine and mask because he will have to wear it at night when we go home  :-\
    She said that they will do a sleep study 6 to 8 weeks after he starts on cpap.

    She also said that I need to be trained in how to do an ng tube feed, how to ensure the tube is in his tummy before the feed and how to insert the tube into his tiny nose down into his tummy  ???

    She said the speech and language therapist will continue to work with me while J is in hospital to try to get J back drinking bottles orally but that I need to know how to do the ng feeds encase he still needs them when we are discharged.

    About an hour later a woman arrived at Js room with a cpap machine and mask. She adjusted the mask to fit Js tiny head and  explained to me how the machine works, what we need to do with it every night and about cleaning it etc

    During the day I started the ng feeding training...whenever J was getting his 3 hourly feeds the nurse showed me what to do so I now know how to check the ph in his tube to make sure it is in his tummy before the feed and I know how to give the feed. All of that is easy enough..it's learning how to insert the tube down into his tummy through his nose that I'm not looking forward to  ???

    Tonight when he was settled after his 9pm feed the nurse put Js cpap mask on and turned on the machine. J was unsettled for just a minute or two then he fell asleep. Fingers crossed he does well with it tonight and doesn't need additional support from oxygen  ^pray^


    Offline Shamrock.

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    « Reply #47 on: 16/09/18, 07:37 »
    Sunday 16th September 2018

    J is 8 Weeks 6 Days Old (2 Mths Old Today)
    Day 28 of Js hospital stay

    J has really turned a corner in his recovery since I last posted  :)

    He started on the cpap on Wednesday night and it went really well....He tolerated it fine and he didn't require extra oxygen support.

    During the day on Thursday he was still having some desaturations while he was asleep especially when he was in a deep sleep so the consultant said that if we think he is going to have a long daytime nap we are to put the cpap on him.

    So J has been on cpap at night and for some daytime naps since then and he is getting on well with it.

    We have also made good progress with getting back to feeding him orally. Since Thursday we have started to give him some of his feed orally in a bottle and then put the remainder through the ng tube.

    The speech and language therapist said we have to take it slowly with him so we are giving him about 40 or 50mls in his bottle and then putting the rest of the feed through the tube. He is on 7 feeds a day now and he is on 115mls at each feed. We have to take it slowly with him because their is a risk that milk could go down the wrong way into his airways and his lungs and he could develop a chest infection or pneumonia. Thankfully he has been tolerating the bottle feeds...There is some coughing at each feed but he is doing well.

    I actually inserted Js ng tube myself today while being instructed by the nurse  :o  I was dreading doing it but it went fine even though poor little J was bawling. The tube goes up through his tiny nose down his throat and all the way down into his tummy  ??? I  have to be able to insert it 3 times under nurse supervision before J will be allowed to go home. DH is also learning how to do it and he will have to do it 3 times also.

    J was weighed today and he is now 4.95kg (10lbs 15oz) so he is growing really well  :)

    This weekend we had the best family weekend we have had since J went into hospital. On Friday I found out that we had been allocated a place in the Ronald McDonald house which is a purpose built house in the grounds of the hospital for the parents of sick children. You are allowed to bring your other children (not in hospital) to stay overnight with you in the house so that you can all be together as a family at the hospital. So DH brought P and R up with him on Friday evening and we were all finally together again sleeping under one roof with baby J only 5 minutes walk away in the hospital. The weather was really nice this weekend and we were able to bring P and R out to the beach for a couple of hours both on Saturday and today while the nurses looked after J. It really made a huge difference to my mental wellbeing to be able to be with all 3 of the kids. I had been starting to feel really down in the dumps about missing P and R and being torn between wanting/needing to be at home with them and wanting/needing to be with J.

    I have been at the hospital since Friday last week - so 9 days in a row here - and this evening I am going home with P and R and DH is going to stay with J until Wednesday when I will come back to the hospital to swop over with him again. I will have 3 days of bringing P and R to/from school and DH is going to attempt to work from the hospital on his laptop and phone inbetween Js feeds and nappy changes  ???

    We are hoping we will be allowed to go home towards the end of this week. J will be wearing a cpap mask at night and during long daytime naps and some of his feed will probably be still going through the ng tube but at least we will all be finally at home together again.

    Offline Shamrock.

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    « Reply #48 on: 19/09/18, 22:55 »
     Wednesday 19th Sept 2018

    J is 9 Weeks 2 Days Old
    Day 31 of Js hospital stay

    I'm back at the hospital with J now after spending 3 nights at home with P and R. I came back this evening and swopped over with DH again. I had a lovely few days at home bringing P and R to and from school each day.

    A lot of parents probably dislike the school runs but I relished every minute of them this week. After spending so long in the hospital it was so good to be able to do normal family stuff like listen to the kids stories of what they did in school, who they played with or sat beside etc etc, make school lunches and do Ps homework with her.

    R is in preschool from 9am to 12pm and P is in junior infants in primary school from 9:20am to 2pm so it's all go. Each day I was up early to get us all breakfast and dressed.  We left the house at 8:45am I dropped R to the front door of his pre-school first then drove the 10 minutes out the countryside to Ps school. I walked her to the school yard and waited with her until her 2 new best friends came along and she held hands with them and skipped away to play until the bell would go for assembly. It was so cute to see her holding hands with them. I got home from Ps school about 9:30am and I had until 11:50am to myself to do housework until I had to go to collect R. Myself and R had from 12pm to 1:40pm to ourselves until we had to go to collect P.

    Our childminder T is only able to work full days for us now on Thursdays and Fridays but she is willing to help out at other times if it fits in with her new venture. She minded P and R for me this evening while I drove to Dublin to swop over with DH.

    Since coming back to the hospital I have inserted Js ng tube for the 2nd time under nurse supervision. It is quite difficult and stressful to do. Firstly you have to measure the required length of the tube by holding the tube from Js nostril to his ear and down to his chest bone then the middle of his tummy. At the moment he has a size 8 tube and it is measuring 27cm from his nose to his tummy. So you have to swaddle him tightly and stick the tube up into his nose and keep feeding it in until 27cms of tube has gone in. Then you have to hold the tube in place with one hand and aspirate it with a plastic syringe with the other hand to check the ph of the contents to see if it is acidic or not. If the litmus paper shows it's acidic then you know the tube is in his stomach and you then have to secure it to his face with sticky tape stuff so he can't pull it out of his nose  :o All the time you are doing this J is very upset and your own stomach is heaving but you know you just have to do it  :-\  Tonight I had to stick the tube in 4 times before I got it to pass in freely because I kept meeting resistance inside. It's the worst thing I've had to do to any of my children  :-\

    J was weighed today and he is now 5.08kg (11lbs 3oz)

    Offline Shamrock.

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    « Reply #49 on: 22/09/18, 10:01 »
    Saturday 22nd September 2018

    J is 9 Weeks 5 Days Old

    After spending 32 nights in hospital J was finally discharged yesterday  :)  :)  :)

    I inserted Js ng tube for the 3rd time on Thursday (It went fine) so I got signed off by the nurses as being competent to do it.

    On Friday before being discharged both myself and DH were given basic life-support training by the ward manager Liz. Using a dummy child she showed us what to do if an infant stops breathing and what to do if an infant is choking. It was good to learn about it...please God we will never have to use it  ^pray^

    Before leaving we were also trained on how to use Js cpap machine and an engineer will call out to our house in the next few days to make sure we have it set up properly at home and to show us how to download the sd card from it onto a laptop to email to the respiratory team at the hospital.

    The nurses have also arranged for our local public health nurse to call to see us early next week. She will weigh J regularly and hopefully provide support if we need it.