Saturday, March 14, 2009

We should be home but the rollercoaster continues

Well last Update we were home and hosed, infact we did have Sarah home, all for one day.

We then returned to hospital for a Simple Surgery, well I guess with Sarah you can never really say anything has been simple thus far.

This time Sarah actually went down to theatre and atleast wasnt operated on at the bedside, watching her go through the doors to theatre and being left holding her bunny rug was really hard, through this whole journey Ive been able to hold her hand so that she knows mummy is right here, but this time I couldn't and my child's life was literally in someone else's hands, reminded me of the day she was born, it was totally out of my control and up to the surgeons and Sarah herself.

So Surgery started at 830am and I was told it would take 1.5-2 hours, 930 came and went, so did 10am and then 10.30am. I was expecting to see the surgeon any minute, but then it was 11am and no news. Finally at 11.30 I got the news that all went well and she was on her way back to NICU.

I followed her up there and once back on NICU, a wave of emotion hit me, it didn't even look like Sarah, I had left her all wide eyed and now she was ventilated and sedated on painkillers. It was a pretty emotional day all round but she had made it through yet another surgery and her little body was getting some well deserved rest.

A friend at the hospital who's little boy is also in NICU kept me company most of the day, she came in to see Sarah later that night and commented on how "good" she looked, so I took that as a good sign as she herself has seen her little boy through a few surgeries.

Wednesday and Thursday were probably the toughest days - the tried quiet a few times throughout the day to take her off the ventilator but she wasnt able to breath on her own, so I continued just sitting there and watching. On Thursday they started turning down her Morphine infusion and she started waking a little, it was so good to see her eyes open again!

Friday morning I called early to see how she had gone overnight and was relieved when they said they had extubated (taken her off the ventilator) at 6am, I was so relieved - she was breathing all on her own again!!!

I spent the day with her not leaving her side much that day. Michael stays at the hospital on weekends to give me a break and so I can spend a few days with the other kids at home, and I was emotionally drained, in a week Id gone from having her home to seeing her back on a ventilator and a machine breathing for her.

When I left on Friday night I had spoken to the consultant on the ward. We were heading for home and Sarah had been waiting for about 2 weeks for a repeat echo, a previous echo had shown that her PDA in her heart was still open and I didnt want that causing any delays in getting home. The consultant assured me that while yes her PDA is still open it is not causing her any issues and was "insignificant and not an issue"

She also passed a bowel motion on Friday afternoon and I was so excited, after 98 days I had finally changed her very first dirty nappy.

Overnight Friday night and Saturday morning her tummy began to distend, this was our one fear, she had xray after xray and alot of bloods taken. Friday night when the distention was not looking good they started treating her for NEC and I was thinking "here we go again", she was started on 3 Anti-biotics and they were aspirating her stomach contents every hour, this was helping, along with her Antibiotics to bring down the distention. The surgeons were called to review her and were not convinced that she did indeed have NEC but the consultant were not convinced she didnt have NEC so she was to remain Nil By Mouth for another 7 days and Anti-biotics to continue.

By Saturday night she was quite unsettled and very very hungry and the nurse gave her a dose of Morphine and she slept the whole night.

The next week was to go so slowly, sitting there watching her suck the life off that dummy and by Wednesday she had almost given up ever getting fed and it was again an emotional week to go through.

On the Tuesday however I arrived at the hospital around 8am to find her surrounded by heart surgeons, she had some episodes of Bradycardia - the same as she did following her first surgery. The consultant that had come on Tuesday was of the opinion that the PDA was the cause and called the cardiologists in view of doing surgery. I spoke with the cardiac team and they advised that due to her size the PDA could not be done as closed heart surgery.

Everything had happened too quickly, Friday night her PDA was "insignificant and not an issue" and almost overnight without her "clinical state" deteriorating we were talking about open heart surgery. To say the least my head was spinning. While all this was happening the surgeons had come in to say yes lets start feeds, only for the Neonates consultant come in saying - No feeds, Sarah has NEC.

I was so confused with different Dr's saying different things and bu 1030am that day I was a ball of tears.

Already having one child with a heart condition I guess I know more than the average bear, if Sarah's PDA was an issue she would be having regular desats, she would be lethargic and having probs with weight gain, but she had none of these signs, infact she was sating at 99% most of the weekend. Sarah has had that PDA since she was born, there had been plenty of opportunity to act on it.

So I asked to speak with the care manager, I felt as if everyone was being reactive instead of proactive and I was not prepared for Sarah to undergo another surgery so soon, certainly not a surgery that is no medically indicated and a life or death situation. So I said well you can send the heart surgeons down here all you like but I will not be signing any consent forms.

I had a chat with the social worker and then finally at 630 that night the Neonates consultant came to speak with me. After an hours of discussion it was agreed that the PDA closer was not something that needed to be done urgently and we would re-assess in 3 months, if it is still open then I will consider the operation, but she will be bigger and stronger and able to have it done as closed heart surgery.

I was eager for Friday's ward round, Friday was scheduled feed day!!!!! There was also change of consultant so I wanted to make sure I was there and there was no more change of plans. I was so relieved when he said lets start back on EBM with creon and start as 2 hourly feeds. They were to start at such a small rate - only 3ml/2 hourly, but it was a start, or so I thought so.

Dietican then came and said Sarah cant have EBM she cant digest it, I explained that for the last 15 weeks she has been having EBM with creon supplements to aid digestion and she has thrived, I mean obviousiy she has grown from 735 grams. She said she would talk to her boss and get back to us. Well at 430 she still hadnt come back to us. The afternoon ward round was on by this stage and the consultant said lets just do what they want over the weekend, we were then told we couldnt get the formula until monday, I was furious - how could this be happening, Sarah has been on no feeds for 10 days, surely this could have been sorted in that time so when the go ahead to feed was given she could start feeding immediately. The consultant then said I dont care where you get it from just get it and get it now!

So Last night I came home for the weekend and Michael has gone in. What a week it has been.

Feeds are going well. She is now on 9mls every 2 hours and hopefully once she shows she is tolerating they will increase the feeds at a much quicker rate than 3mls every 12 hours.

We are aiming for home next weekend, what a day that will be.

I am meeting with her consultant on Tuesday and will be making it clear that I would like her home next weekend and hopfully he will work with me to ensure that happens.

Well I shall sign off here, I really should update this more often so its not so long to read in one hit!

Karina and Family

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