I have now received all of the records that I requested in order to send to Dr Hill.
The last lot to arrive, was naturally the most important lot, which was everything from Royal Darwin Hospital. I've emailed the Doctor to tell him everything that I have been sent and so now I am just waiting for him to let me know how to proceed from here. I am thinking we will probably have to scan everything for him, as he prefers electronic copies.
Most of the Joshua stuff doesn't mean much to me. I'd have to do a lot of googling to decipher all of the abbreviations I think, and I am not sure that would be worth my time. (For instance, there is an "Investigation Flow Chart" which looks to me to be blood analysis type stuff, but I am not going to worry about googling each thing to find out what it is and whether or not the numbers they have written there were good, bad etc) It would take forever and probably is inconsequential to me.
It is good however to have written down exactly the issues that he had. I know they told me things at the time, because a lot of it is a memory refresher "Oh, that is what they were talking about". Most of what they said went in, but wasn't really processed by me at the time, and for some reason, I wasn't hardcore with the google while he was in hospital, and the googling that I did do was very non-specific and didn't turn up anything of value. It wasn't until a couple of months later that I really started to get a handle on finding more information.
So, now I know that Joshua's basic problems were:
- Respiratory Distress
- High Lactate
- Low Magnesium
- More Seizures
- Coagulopathy (According to Dr Google, this is a problem with blood clotting. This is the first I have heard of him having this)
- Low Calcium
- More Low Calcium
- More Seizures
I am surprised though, that the stuff that really effects me emotionally is reading about stuff that has been written about me. I can look at Joshua's records in a "clinical" way, but when I look at mine it gives me a lump in my throat and tears to my eyes.
I will start with mentioning the comment written by the doctor at RDH. She wrote that I was "reluctant to co-operate". This doesn't make me upset, it makes me annoyed, but actually kind of proud of myself at the same time. Because I am twisted like that. Somebody told me that that is a doctors way of writing "The patient required informed consent before agreeing" Hahaha. True. I did question everything, I also agreed to everything, except for placing a fetal scalp monitor. And I don't feel bad about that, it wouldn't have changed a thing, apart from putting a hole in his head. (and giving them more paper records to say he was doing poorly, which we didn't really need, we just needed him out!) Everything else however, they did get "consent" for. (I say consent like that, because it was more like "We can't do it unless you say Yes, and you don't have a choice so just say Yes"). Joshua's birthday is 2 weeks from today, and yes, I am still bitter about my birth experience. I know it was basically all necessary, for Joshua's sake, but I still struggle with the fact that I basically ended up in the very situation that I hoped to avoid by planning a homebirth. Many times, being in a hospital results in unnecessary intervention and ruins what could have been a beautiful birth. For us, the intervention WAS necessary and yet it doesn't make the pill any easier for me to swallow. For me, the birth was nothing less than traumatic and I think I'd have an easier time making peace with that, if it wasn't for that fact that worst was still to come and I now cannot separate my birth experience from everything that happened afterwards. I hate feeling angry and jealous towards those that do get the sort of birth I wanted, but I just can't help but feel how unfair it is, and how I got "ripped off". When I was pregnant, I participated in natural birth forums like the Australian one "Joyous Birth", and then after Joshua was born. I couldn't go back. I'm getting better though. I've recently been able to wander into the Natural Birth/Home Birthing group on Fertility Friend and be sort of ok. It is hard to feel like you can make a valid contribution to a conversation about "natural birth" though, when mine was far from natural. Anyway... getting rather off topic here...
Back to my records...
Some comments from the Nurses that made me teary:
"Karissa teary this shift as baby unwell in SCN" (stating the obvious really, but makes teary again anyway)
"Patient slept all night when checked. Patient left undisturbed in view of baby's condition" I still can't believe they thought I slept all night. I also can't believe that I managed to go all night without going to the toilet. That in itself is a miracle. The only reason I slept at ALL was just for being exhausted after being awake for 24 hours and having a baby, but it was very broken (by nurses shining torches at me while I was "sleeping") and by the fact that every time I woke up I would think about the injustice of laying there in a hospital bed while my baby was in intensive care and not with me, but never mind.
"Offered Boostrix to Karissa, declined at this stage as very emotional and stressed over baby's condition- will consider if she wants it at a later stage and go to community care if she does. Baby remains in SCN ventilated and on phenobarbitone for seizures. Karissa and partner Rod very upset after returning from SCN this morning" Well for a start, I declined the Whooping Cough vaccine because I didn't want it, not because I was stressed over my baby's condition. But I think that makes them feel better to think that. LOL Just like I declined the Hepatitis B at Birth for Joshua and they wrote in his discharge papers that I was going to get it done at the GP. Uh no.... But I may have just nodded in agreeance to get the frick out of that place. As for the rest, well yeah, who wouldn't be upset. I am still upset! LOL
Also interesting to see what my blood pressure readings were. They were pretty crappy actually. Which doesn't shock me one bit under the circumstances! Apparently they weren't worried about it though. I've taken it myself a few times since having him and its been super duper awesome. So awesome I have wanted to call everyone I know and update my facebook status about it.... But... I refrained.
Oh, I guess the last thing that I should mention in this super long blog post, is that amongst everything, they also sent me the results for the CT scan that was done when Joshua was 5 months old. The purpose of the scan was to rule out craniosynostosis, but they also had a look at his brain. This is what the results say:
There is a sizeable area of encephalomacia in the right parietal region as well as atrophy/hypoplasia in the frontoparietal regions of both cerebral hemispheres. Small foci of calcification, some with linear appearances are noted near the grey-white junctions of both cerebral hemispheres. The extra-axial CSF spaces are slightly prominent generally which is consistent with reduced brain growth in the setting of a small head. The findings are most likely the result of perinatal intracranial infection. Ventricular calibre and position are normal for age. The posterior fossa structures appear normal. There is no evidence of craniosynostosis.
The biggest "what the" here for me was the mention of infection. This could just be a generalisation though, as when you look up microcephaly, it often mentions infection being a likely cause. However, a little disturbing to me was the fact that googling "perinatal intracranial infection" turned up a bunch of articles saying that it is often mistaken for Hypoxic Ischaemic Encephalopathy. Not exactly reassuring.
Otherwise, these results basically say that he has "softness or degeneration" of brain tissue. That the front of his head is wasting away or underdeveloped (I am thinking this is why his forehead is so tiny..) And what I would basically describe as scar tissue in the brain.
It is not exactly a glowing report is it. No wonder the Doctor said that he is doing so well for having a head so small!
There has been some discussion recently among my "HIE circles" about the value of follow up brain imaging. Mainly in reference to MRI, but I think CT can come under this as well. Apparently in some cases it might be necessary, though I am still not really clear how or why. In the majority of cases though, I don't think it is. I mean for example, the above results have only served the purpose of saying again how totally F-ed up his brain is. I am at a place now where I am not bothered by it. If I would have read this when he was 5 months old though, it would have stressed me out immensely. I know now however, that looking at Joshua and the way he is, is far more telling than any MRI or CT scan. If we get offered a follow up MRI, I will decline. (yep, I know, that is my style.... love to decline stuff!) It serves no purpose. To do an MRI, he would have to be sedated which I am not really down with, and we already know his brain is damaged. A follow up MRI would not change his current course of treatment, so to me, it is not necessary. I recall them mentioning (after he was born) a follow up MRI at 12 months of age. They haven't mentioned it again since, but if they do, you know what I will say :)
Oh, that reminds me, I got a letter the other day with details of Joshua's next hospital appointment. It is on the 8th July and it is with Peter Morris. I was a bit disappointed about this as I actually liked the other doctor better. But Peter Morris was his Doctor after he was born and who he was supposed to be seeing all this time if it wasn't for him going on sabbatical to the United States. Well, I guess we will see what he is like this time...