surgery today .. what a rigmoral trying to get things sorted
if departments could communicate better with each other things would be so much easier!
i am so glad i am assertive .. i really don't think they way they usually do this standard procedure (hernia repair) would work for kutura at all .. more later .. just send love!! especially in the afternoon whilst in theatre .. oh my lil big guy i hope we find out what is going on (liver biopsy) and fix up your sore lil insides that keep squelching to the outsides!
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This week has been so fast and slow. The surgery went well, but lead up was stressful.
The surgery takes place at the children's hospital, and babies need to fast for 4 hours before being put under. The usual procedure is to wheel a hungry baby to the children's in a transit crib. I did not like the idea of my crying hungry scared baby being treated this way, so I asked if we could do the intubation and sedation here before going over for the GA. My consultant Dr D was off sick much of the week, and another consultant sent a message thru the nursing staff that my request was declined. I asked to meet the anestitist (spelling? let's say sleep doctor ) .. so he came over, coz that is standard procedure too, to meet me. He told me he would be happy to do the intubation and sedation here in the nursery, but that it is considered professionally rude, so he wouldn't jeopardise his working r'ship with the unit. wtf?? grrr .. i asked again to speak with da boyz acting consultant, who i still hadn't met, if he would do it, and he once again passed a message 'no'. I have heard about this particular Drs absence around parent communication and involvement in decision making, so I wasn't impressed. I was scared for my lil man and feeling emotional about it all.
That was Weds and Thurs. Friday came .. the big day and I was freaking out. If Kutura was to have the surgery he would have to have the canula put in by 9am, as that is when he was to begin fasting by, and I wanted the canula inserted whilst on the breast. It was 8.30am and I still didn't know shit. I starting talking as if the surgery wasn't happening. I had the unsigned consent form in my pocket, which a few staff members found amusing, and others didn't. Then in walks Dr D .. "I wouldn't miss this for the world' she says. She had been trying to will herself better and it must have worked! She told me she was happy with my plan, and that we needed to begin. The lovely Dr L (who was our retreival Dr on day 1) tried to get a canula (for fluids) into Kutura 3 times then handed over to Dr D. On the 5th attempt she was in. My poor lil pin cushion was having a flat-vein day, and it was so easy the last time Dr L put one in I stood up and held him in my arms as we walked around to intensive care.
I lay him down on the cot (an 'open care system', which basically means has a big heater over the top rather than use a humidity crib - better for surgery) .. and he looked mildly amused at his surroundings. Soon he was heavily sedated and ready to be intubated. My cue, as agreed with Dr D, to leave. I went back to parent craft room and cried! The phone rang soon after, I was told the canula had tissued and the first attempt at intubation had failed. I hurried there, sang to him, calmed him in his groggy haze of confusion and pain as a needle was placed in his little body for the 8th time that morning. The tissued arm was swollen with morphene and we couldn't tell how much was actually in his system, so he had his full dose once again thru the new canula. Now he was truly out. I left and Dr D had no trouble intubating that time. He is such a fighter .. I am thankful they actually managed to get the tube into his throat!
I returned soon after and had flashbacks of when Moss n Kutura were ventilated for weeks in those sterile rooms. The smells brought back memories of the early days. I was overwhelmed with emotion as I looked around me at the machines and listened to the noisy monitors. I went back to special care, my boys now 15-20 metres apart from each other, and gave Moss a breastfeed, and leaving him safely in the arms of Heather.
The trip to the children's was fast. Not too many dorries trying to peek in the crib this time; I hate that. Kutura's nurse handed over to the surgery nurse. I explained that Kutura was in a cloth nappy, and gave her a fresh one for after the surgery and a wetbag for the old one. As Bluqi was dressed as a ****bug it seemed right that he return to us with his ****bug nappy on, with raw silk liner post op. I was so stong, until he was wheeled away, and I burst into tears.
The hernia was repaired, the hydroseal was drained. A piece of Kutura's liver was taken. We made it back to the nursery. I lay my body over his. I watch the monitor and listen for secretions on his chest. He is suctioned often. That is a good thing .. his body is strong enough to fight the ventilator. The suctions increase, I stay with him overnight, except to breastfeed Moss. Does Moss know why we aren't there? He seems happy. He actually seems well rested without his brother waking him up all the time!
Kutura was extubated at 4am. I sing to him. I don't know how I managed to keep my voice so steady. I massaged his chest and face as the tape is removed and tell him I love him as the tube is pulled from his throat. He coughs and cringes and cries a raspy cry. My instinct is to gently lift him to my chest, I tell the nurses I am picking him up, I kinda ask 'is that ok' tho I am doing so. They are watching him and the monitors. It is hard to tell if he is desaturating due to the movement of handling him. This is unfamiliar territory for the staff and I can feel that. I ask them to help me to the recliner and they do. We try to settle in, and it appears Kutura's sats aren't good, I ask for a few minuted to settle. The Dr on duty looks at us 5 minutes later. 'Sats of 100' he says, 'Perfect, he can stay there' he says to the nurses. We slept from 4am until 8am when I was woken to a tap on the shoulder to say we could return to special care. That was the first time an extubated baby has recovered on mother's chest in this unit. He rested well and recovered quickly.
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So here we are almost a week post-op .. still no liver biopsy results .. more soon .. babes awake xXXxx
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we are heading home! yeeeeeeeeeeeeeeeeeeeewwww................!!
this last week i have felt like a bird in a cage. we have had the boys in parentcraft room by day, but as Kutura has had very low sugars overnight medical staff wanted him back in room 7 fair enough indeed .. but going nuts here!
the boys don't settle properly in their big hospy crib anymore. they can sense when we go, hate sleepin on their backs every sleep, are woken by the noises of the place and the bright lights are just horrid. our room has had a well-used admission spot the last week. I couldn't help but sit and cry, my heart aching as a 15 minute old baby gets a vitamin k shot under bright lights in a humidity crib and cry out for mum, who can't hear coz she is up one floor. another admission gets wired up to a monitor, heel-pricked a few times, settled into bed the has the vernix gently wiped off by nurse in preparation for dad coming to visit. i understand more why they do these things now with sick babies; but the WAY i would have such done and the way it happens in these institutions is world's apart. i don't hide my truth from the nurses as i cry and send the babies love. i think the reminder is healthy .. and so do some of my favourite nurses
back in parentcraft Moss slept after a big feed at 8.30pm, and Kutura was clustering as usual. nurse came in to say go back to room 7, we agreed that once Moss awoke we would. at midnite another nurse came back - Moss is a good sleeper
so off we went to special care. i spent the next 2+ hours settling the boys into bed. i vented my frustration to the lovely team leader as i went back to my room. I told her how we were sleeping, and now we are unsettled in bright lights, and that Kutura is due to feed again in 30 minutes, and that this is bullshit, and also no, i won't let strangers bottle my babies while i sleep'. she looked at me tenderly. i really love some of the women that work here.
the next day when we collected da boyz we knew we would not be going back to room 7. mgr A came around and talked to us about managing sugars and doing the BSLs ourselves (blood sugar levels; lil prick of blood) on his feet and to report in. i have my phone alarm to make sure he doesn't go 2 hours without a feed. we finally had our first night all together .. matt n blu stayed late, then heather and i did the all night feeds. sometimes we even slept. last night we started K on poly-joule .. just a sprinkle in EBM at 11pm and again in the early hours to keep his carbs up and his sugars safe. it worked and he went 2.5hrs between feeds. will be trying for 3 hours tonight.
as for his liver.. it can be dealt with as an out patient. he has immature bile ducts, which will hopefully grow. there is more to it that that, but no need for a lesson here he had another liver function test (LFT bloods) taken yesterday and those results will determine how soon we return to clinic at the children's hospy.
learning about Moss' oxygen .. am damb good at changing his prongs just right now. matt has oxygen at home and ready for us.
da boyz and i are going by ambulance to nambour hospital monday with a view to home on wednesday, matt, bluqi n heather will meet us there. medical handover is important for it is where we go if there is an emergency and i want them to know who we are and what we about should anything happen; that's for sure.
we have been here about 130 days or so now .. whoa .. homeward bound at last!
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on da way home today from nambour .. yeeeeeeeeeeeeeeeww!!!
lovely friend is in my house making it beautiful today and putting food in my fridge
(it must be a mess after all this time .. matty n blu coming and going just dumping stuff, collecting other stuff and coming back to hospy again) .. wow .. home with my boys
may the day be lovely!!
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