But from the beginning.
Yesterday evening, Logan was asleep. He had been talking and groaning in his sleep, and although I was concerned, the nurses assured me that he was just dreaming... afterall... his BP, pulse and temp were fine. Though his pulse rate was lower than its usual 125bpm, that was not a bad thing.
Things changed at the speed of light when his regular blood sugar was taken and a glucose reading of 0.6 was discovered! He was not sleep talking... he was unconscious and slipping into a diabetic coma!
In my usual bossy way, I ordered the nurse to grab his glucagon injection, which was beside the bed, draw it up and stab him in the leg! She did this whilst the other nurse left the room, and unbeknownst to me, called a 'code'. This is done by dialling a phone number, which results in a million people landing on our doorstep simultaneously, bringing doctors, nurses, specialists and a crash cart!
I stayed at Logan's head the whole time, taking blood sugars, talking to him, gently slapping his face and basically doing anything I could to encourage him to speak with me. He later told me that he had no memory of this, and that when he did come around, it was slowly, as if from an anaesthetic. I was later told by a doctor, in ICU, that they thought I was a nurse until they saw me at his bedside down there. LOL. I'm obviously a fabulous actor. Evan was the sensible one and stepped to the back of the room to let them do their work... I've never been one to make good choices!
Eventually, much to everyone's delight, Logan started to answer my questions with some clarity. Which resulted in me yelling out "he's back!" like some idgit! Unfortunately, the levels did not remain stable and he required several bolus (you should know what that means by now), of sugar.
The irony of the situation is that once he was conscious and his bloods were acceptable (not ass-septible), they all walked out and left the three of us on our own... two of us shaky and slightly shell-shocked. Eventually the Ward Manager, Natalie, came and introduced herself and said that she felt it would be too much for her staff to care for Logan, at least in the short term, as he had more needs than she felt it was fair for them to manage, and said that their was a high likely-hood, of him being moved to PICU.
This was not too much of a shock, as the liver people had already suggested it might happen, but it was the conditions under which it was being implemented that made us a little shaky. So whilst they considered this, Evan and I took the smart option and prepared for the possibility, which was just as well, as they gave us no warning and just came to take him.
The room was left for us, with all our stuff in it, just missing us, the bed, and a small backpack of gear. Arriving at PICU was not as scary as I thought it would be. I have been to ICU and HDU in Waikato, and was picturing something along those lines, but had forgotten that we were talking about the children's ward. PICU (Paediatric Intensive Care Unit) contains the HDU (High Dependency Unit) as well, which is techincally where Logan was. But he had his own nurse (often three actually) and his own private room, so it felt more like ICU. The difference, I suppose, is that ICU patients are usually on breathing machines or unconscious.
Handover from our nurse to theirs was interesting to behold. They obviously have their way of doing things and Logan's poor nurse got it in the neck from an old girl who has little respect for pretty young oncology nurses (even intelligent ones). Logan had initially not been to fussed about going down, but that was to change. Life in PICU is far different to that on the ward. We may have had a 'private' nurse in our room, but the fun ended there. Lights on around the clock made it impossible for Logan to sleep (without willingly going back unconscious!). The nurses talked loud and long with each other and the doctor on the ward, in the room. They were unused to have patients that were awake and Logan was exhausted and becoming grumpy. To top it all off, his blood sugar level would not stabilise and they had to keep giving bags of sugar. The grumpy nurse (previously mentioned) suggested at one point that their blood gas machine reading were correct and that mine, from our little machine, were incorrect, when it came to reading his glucose level. By now I was skilled in recognising Logan with a low blood sugar and I challenged her to a test off with our manual machines. Turns out, hers reads one point high, and mine, one point low... their fancy blood gas machine was totally wrong and needed recalibrating. They nearly lost him to another hypo! In amongst all this, Logan was continuing to have all his meds, and two hourly ventolin via an oxygen mask over a five minute period... exhausting.
Eventually he drifted off to sleep despite their ministries and with that, Evan went back to the ward to get some shut eye. I managed to remain awake until 4am when my body could no longer keep its eyes open. I had been told earlier that I was allowed to sit with Logan, but if I got tired I was to leave the ward as sleeping parents were not allowed there. Just as I was arranging to swap with Evan, another nice nurse said not to worry and gave me a blanket. I slept through till 7.30am on a chair...
At 7.45, two of our ward nurses came down to see Logan. It was lovely to see them. They are really part of our family now. Strange to say that when we found it so hard to fit in here in the beginning. I suppose Auckland isn't so bad if you don't have to go outside and hang out with Aucklanders! LOL!
Sometime after this the doc came and said that they had stabilised him and that at some point that day we could return to the ward. She said, that in a nutshell, Logan had been in kidney failure, but had responded exceptionally well to the treatment, which was the reason we could go back upstairs.
At 9am, we were told we were allowed back on the ward. YIPPEE! But it took till 12noon to get there... and on arrival, we were greeted by staff and Aunty Sue... Charlotte arrive shortly after. Logan was too tired to socialise, but we talked quietly together.
One of his doctors arrived in the early afternoon and gave us the following information:
- Logan has lots of fluid on board - he has gained 4kg in 24 hrs
- He has lost 50% vision in his right eye. She thinks he may have a bleed there and is going to contact the eye people. She feels this will correct itself
- They are not able to use meds to make him pee, due to his potassium level, so they are not replacing the fluids that he expels (urine, poo and vomit)
- They are restarting his TPN (total parental nutrition) tonight. It will have a higher glucose concentrate and less quantity
- At this stage they are still giving platelets twice daily
- He is having a red cell transfusion today also
- Chest - fluid between the chest wall and the gut - if it gets harder for him to breathe, or his oxygen stats go down, then they will consult with a surgeon about the possibility of draining it
- Albium level in the blood is good, will give more though and hopefully it will draw the fluid away from the gut and the lungs
- Kidney and renal function now much better and heading toward getting back on track... not perfect though by a long shot
- Potassium level now stable, but will be easily messed up again if we give the wee meds
- No insulin at the moment, but when they start the TPN, may need to begin again
- Yesterday Logan crashed because they did not give enough sugar to counteract the insulin... which was needed to counteract the potassium.... (took lots to get that admission)
- Bilirubin stable, if high, and will continue with defibritide medication
- GVHD - not change - still severe diarrhea - continue meds on at present
- Have to seriously watch for dehydration as not replacing fluids now
- They are going to take out the IV that was put in up here yesterday, but blown out down there
- The meds that Logan is on have damaged his kidneys... this is going to take a long time to repair
- They are going to reduce the dose of cyclosporan, which is the drug they give to suppress his immune system, as it is damaging his kidneys!
Ok, am definitely exhausted now... not the young person I used to be, able to last on three hours sleep.
Lastly, just spoke to one of our nurses from last night who help bring Logan around. She was full of praise for Evan and I, for the way that we handled the crisis. I explained that he was pink and breathing and therefore we could cope. Anything more dramatic might challenge our abilities!
Thanks to all for your love and support and texts well into the night...
We have a pile of mail here, but have not opened it yet so will say thanks for that tomorrow.
and keep smiling
Tracy, Evan and family