Here's the link to the whole blog that Bernard and I wrote back in 2009:
There are 37 posts in the original blog so this is a very brief summary! I've covered the first posts in more detail and just summarised the themes from the rest.
Wednesday, July 8, 2009
The Day Before
All of Harrison pre-op checks (blood test, ECG, ECHO, X-ray, general obs, surgeon consent, anaesthetist visit) happened in quick succession. All the medical staff who have come to talk to us today have also checked whether Harrison has had any questions. He signed his consent form and said he was feeling confident about tomorrow! We feel more reassured having spoken to one of the surgical team although I can't say that I'm feeling confident! So, what are they planning to do? The plan is to replace the current pulmonary conduit (donated artery fitted over top of Harrison's heart which by-passes his own pulmonary artery) with an aortic artery. The reason being, that should they need to replace the valve in the new conduit, it is now possible to do this by cardiac catheter (through the femeral artery in the groin) which means that Harrison's chest shouldn't need to be opened again. They are also going to cut out part of the remaining pulmonary artery above the conduit where it joins into the left and right lung arteries. This has always been a problem for Harrison as it is a narrowed area which has stents (metal cages) in it, to keep it open. They are going to replace the dissected part with a patch which will increase the size of the artery. At the same time, they will take out the stents as they will no longer be needed. The operation should take around 8 hours in total with Harrison being first on the list at 8am. In true Harrison style, he doesn't want to give the surgeon an easy time, so his current conduit is lying extremely close to where they need to open him up. As a result, they may need to put him on femeral bypass before they even attempt to open his chest. Bernard and I were quite relieved to hear how they were going to tackle this slight technical hitch. We feel a bit better about the procedure now. As I write, Harrison is just off for a chlorahexidine wash. This is a new procedure where he has to shower using a special orange lotion to specifically clean his torso, arm pits, arms, groin and neck. He then has to repeat this cleaning regime in the morning at 6am. (Note Harrison and Bob's matching outfits!)
Thursday, July 9, 2009
Bit Rocky but Good News!
Harrison was anaesthetised at 8:20am this morning so now we are wandering around like spare parts. We had a brief visit from Harrison's surgeon this morning just wanting to ensure that we'd been informed about the probability of Harrison going on to femoral bypass and therefore returning with another wound. The surgeon seemed very relaxed and did say that they would be reviewing Harrison's MRI scan again before making any incisions.
When we arrived at PICU at 6pm, there was an empty bay where Harrison should have been. He'd been delayed in theatre. It was 8pm before we finally got to see him. He had certainly been making his presence known to all the PICU staff. When he arrived in PICU he dramatically dropped his blood pressure and then started to flip in and out of heart rhythms. He had developed a problem with the top chambers of his heart. The electrical pathway wasn't triggering them to contract so he was losing 30% of his blood pressure as a result. There was a lot of tweaking of medication, two bags of platelets and three bags of plasma infused very quickly; clearly evident by the empty blood bags abandoned around Harrison’s bedspace. He settled for a bit but then started to flip his rhythms quite regularly. They were also having to cool him internally so there were ice packs all around him. As he was quite unstable, they called the surgeon back in from home, his assistant, the paediatric electrophysiologist, consultant intensivist, cardiologist and several other doctors. Harrison was certainly keeping everybody busy! They were considering putting in atrial pacing wires but fortunately he finally settled on a particular drug. We left his side around 12:15am this morning as he seemed more settled. Since then, he has been much better and when his blood pressure dropped after that, he was able to recover it quite quickly himself. Since returning from theatre, they had paralysed him to keep him very deeply asleep. As he had improved overnight they stopped the paralysis at 6am so that when I arrived at 8am he was beginning to wake. Now it was my turn to be busy! Every time he woke a bit, Harrison went straight for his 3 chest drains and the ventilator. It was a bit like trying to catch an octopuses arms at times. Considering he was only semi-conscious he was doing a good job of out witting me! As he became more awake, the ventilator was distressing him more and more. He was doing so well at trying to breathe for himself that they extubated him at 9:30am. He now just has minimal support from oxygen through nasal cannulae. What a difference a few hours can make! To say we are relieved is an understatement. I am expecting him to still be quite tired today but hopefully now he will make steady improvements. They think that he's over the worst of the rhythm problems but they still need to keep a close eye. Because of last night’s dramas, we had the opportunity to speak to Harrison's surgeon at length. He wasn't able to patch the pulmonary stenosis because when he looked at the narrowing inside the chest, it went right down into the lung, so just widening part of the artery wouldn't have sorted the problem. Harrison is left with the stenosis but the surgeon is going to ask the cardiologist whether he might be able to dilate the artery a bit more by cardiac catheter. As for the donated artery; he replaced the calcified one and everything looked great on the ECHO. Apparently before the operation, Harrison's ventricles were struggling to contract properly because the conduit / homograft was so stenosed. The new one immediately enabled the ventricles to contract properly but it showed that the valve inside the new artery was already leaking. The surgeon wasn't happy with this as it would have meant a valve replacement operation in about six months’ time, so he removed that conduit (basically repeated the whole operation) and put in another. This one is working perfectly with no regurgitation (back flow of blood). That was one of the reasons why the surgery took longer. The other was Harrison having his first rhythm problem. So all in all, Harrison is doing brilliantly now.
Friday, July 10, 2009
When I got back to Harrison he was being put onto a 'NIPPY' BiPAP machine. The oxygen through the nasal cannulae wasn't giving him enough support with his breathing so this machine is part way between a ventilator and the nasal cannulae. It is set to push air into his lungs and to give him extra help when he breaths for himself. It is administered with a face mask held in position with straps. As you can imagine, Harrison was not impressed by this and got a bit stroppy! Once he got used to it though, he tolerated it quite well. He was allowed a little break from the NIPPY around lunchtime as they needed to scan his diaphragm. The base of Harrison's lungs were silent on examination so the intensivist wanted to check whether his diaphragm was moving downward to allow his lungs to inflate. The scan confirmed that it was moving - just, so he needs to stay on the mask for the time being. As we removed the mask for the scan, Harrison was quite agitated and clearly upset about something. We were all concerned that he was in pain but he managed to say why he was upset - 'Grand Prix'!! He was worried that he'd missed Sunday's German Grand Prix!! The only other event to note this afternoon was another rhythm episode. He went into nodal rhythm for quite a while but managed to maintain his blood pressure this time. The reason for this episode was Harrison's chilled out position with his arm above his head which occluded the neck line where the drug (Isoprenaline) was infusing to stop the episodes. He also had some vomiting around this time and told us that his heart hurt just before the episode started. He will be remaining on NIPPY overnight so fingers crossed he should stay quite settled.
Saturday, July 11, 2009
Apologies for the late post but our boy has been keeping us rather occupied! We left him last night on the NIPPY machine with his usual melatonin medication sending him to sleep. Our plan was to have a good rest and return to him early in the morning. Harrison had other ideas! He awoke at 12:30am asking for us. We both went back to the ward and stayed with him until 3am. He had hold of both my hands and every time I so much as twitched a finger, his eyes would open and he would hold my hands even tighter. He was also asking me what time it was every few minutes. It must be very distressing and disorientating to be in a room full of strangers, dosed up on medication and feel so rough. (Despite antiemetics, he was still vomiting everything that went into his stomach, which is currently only sips of water and medicines). The doctors finally decided that the only way any of us would get any rest would be by sedating him. Fortunately, this did the trick for a few hours and he didn't wake until 8am when he asked for us again. He had been on Nippy all night (which apart from assisting his breathing was a great way of keeping his nasal gastric tube away from stray little fingers!) but despite this, he was still working really hard to breathe. A chest x-ray was done before we arrived this morning and it showed that there was a lot of consolidation at the bottom of both lungs. Basically the alveoli were closed up and air was not able to enter his lungs. The decision was made for lots of physiotherapy and if that didn't work then the doctors were considering re-intubation as to look at, Harrison was absolutely exhausted.
Bernard and I were quite happy with this decision as we were concerned at the amount of effort he had to make to breathe. The physiotherapist was just about to start working on him, when Harrison had a dramatic tachycardia (192 bpm) complained of chest pain and went out of rhythm again. It took a while to settle but he is OK now.
After the ward round, the surgeon asked for two of Harrison's three chest drains to be removed. The first drain caused Harrison a lot of distress when it was pulled out and he asked to be put to sleep for the next one. He had a bolus of morphine to help instead. During the second procedure, the nurse inadvertently cut the stitch which pulls the skin together once the drain is out. This meant that the surgeon had to come and put in another stitch. He was certain that the drains had been labelled up incorrectly (he was the person who had inserted them initially) and that the one which they were removing should have been the one that stayed! As this one was no longer draining, he decided to take them all out. Since their removal, Harrison has been better with his breathing, but still needs a careful eye as there are signs that he's still working hard. The past 18 hours has been so hard for Harrison but he is being so brave. He is making everyone laugh by the way he gets stroppy and orders the intensivist and daddy out of the room!
A summary of the rest:
Harrison added apnoea to his bag of tricks! Every so often he would stop making any respiratory effort for what seemed like several minutes, but in reality is probably only a couple. Still, that's more than enough when you're watching it happen!!
Harrison has probably always suffered from sleep apnea. Whilst he was dependent on oxygen 24 hours a day that alleviated the situation. Following his third surgery though (where he was finally weaned from the continuous oxygen) the apnoeas became increasingly more apparent.
At that point, we were advised that it was safe for Harrison's oxygen levels to drop to 90% before we should be alerted. Previous to this his oxygen levels hovered around the high 70s to mid 80s and that was normal for him. We'd been allocated an oxygen saturation monitor from when he was a very tiny baby and we secure this to his foot at night so that we can be alerted to any drops in his oxygen saturations. We continue to monitor his levels to this day. It's one indication that he's starting to become unwell so we're able to take preventative action at the earliest opportunity. We were becoming increasingly alerted by the oxygen saturation monitor to a fall in Harrison's oxygen levels overnight. Sometimes it would be up to five times a night. We would immediately jump out of bed and go into his room. We'd initially observe the equipment to see whether it would resolve on its own. Invariably, we'd have to give Harrison a shake to make him start breathing again. It was a welcome relief when he started to display the apnoeas post-surgery and the doctors realised that he needed a bipap machine overnight to support his breathing. Looking back now for the 12 years that we've had the machine, Harrison definitely wakes up more refreshed then he ever has done and I can honestly say that the machine has made a huge difference to him. I also think that by not being as tired his immune system is more robust, so he's actually caught less chest infections since too.
It took several overnight sleep studies during this fourth post surgery period to get the appropriate settings for the BiPAP machine partly due to complications following the surgery - a collapsed lung, partially paralysed diaphragm and a dose of Swine Flu! You can read the daily dramas of these in the full blog -
As for previous surgeries, the other main issue post surgery was Harrison's inability to eat. This time he lost around 4kg in weight and couldn't be tempted by any tasty treats. He was prescribed Calogen (which does exactly what its name suggests - gives you far too many calories in a tiny quantity), multivitamins and vouchers for the restaurant so that he didn't need to eat his evening meal so early. He was also allowed extra items from the menus on the ward. Harrison put his jeans on for the first time in two weeks and they really illustrated how much weight he'd lost; you could virtually fit two of him in them!
Finally everything was under control and Harrison was safe to be discharged with an appointment to return in 4 - 6 weeks for a respiratory review.
The gap between Harrison's third and fourth surgeries highlighted the advances in PICU care. I was amazed how some children were now coming back from surgery extubated and barely spending a few hours in PICU before being transferred back to the ward. As usual, Harrison lagged behind, making himself at home in his PICU bed!
Glossary:
BiPAP - Bilevel positive airway pressure (BiPAP) ventilation is a noninvasive technique used to provide ventilatory support to a spontaneously, but insufficiently, breathing patient using a facemask or nasal mask.
Sleep study - The most common kind of sleep study is called a "screening study". It makes overnight recordings of:
- oxygen levels (by attaching a small clip to the patient's finger)
- breathing (by taping a small sensor between the patient's nose and upper lip)
- chest and abdomen movements (velcro straps are used to hold small sensors in place)
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