ACC | Minding Thomas

So after a year we finally heard back from the external advisors through ACC who have decided that our claim has not been approved because the treatment for both Thomas and I was appropriate and did not cause the injury that he sustained. It was a very detailed report and was quite informative regarding suggested causes for Thomas’ brain injury.

They have suggested that Thomas had an unexpected (and very uncommon) cerebral sino-venous thrombosis. It says that the incidence of sino venous thrombosis is rare but variable with an estimated incidence of 0.67 / 100, 000 children per year. It then further lists a few risk factors leading to the last one in the list, which is of course maternal pre-eclamptic toxaemia. And there it is!

I am no mathematician so I had to consult my calculator, I mean, my husband. So I am really gobsmacked! It works out to be 67 out of 10 million. That’s less than 1 per million. He really is the definition of less than a one in a million baby. You know I always read statistics and think that it’ll never be me. Well so it is…

And moving on to the topic of ACC. This means that we will face some struggles with equipment and funding in the future. Especially, where therapy is concerned. We decided to go down the private therapy road for physical therapy because we just felt that we had to do more for our boy. It’s so hard to find a balance between vision and physical therapy. Where vision therapy is concerned, I am very happy with the support through BLENNZ and the resources they provide. This is going really well. Thomas has days where you can see him quickly glance at something for 1 – 2 seconds which is a big improvement for him. Up until 5 months old, he didn’t look around at anything.

Where physical therapy is concerned, as his main caregiver at home, I felt I needed to be doing more with him. Thomas does have a VNT through the hospital but she has had to work really hard on sourcing equipment and this meant that physical therapy got put to the side sometimes (not all the time). Also, the VNT cannot come all the time, they have restricted funding allocations too. So we approached Glowkids and it was the right decision.

We are very fortunate to have a conductor who is a sensory specialist teacher at Glowkids. Thomas requires private sessions and these are not funded. It is not cheap. We only want the best for Thomas and to give him the best quality of life. For the new year I would love for Thomas to attend twice weekly however we cannot afford this. So, I have sat on the Givealittle page idea for a good while. I have finally decided to set it up in the hopes that we can access more therapy for Thomas.

Here is what Thomas’ therapy looks like.

Please help us by heading over to our Givealittle page either on the Facebook page or listed on the right hand side of this blog or below. It would mean so much to us to be able to give Thomas these opportunities. Please share with anyone you think will be interested in supporting us.

Thank you 💕

http://givealittle.co.nz/cause/mindingthomas

Yip, you read that right. It’s only Wednesday!

So far this week has been a bit (just a bit!) of a downer really. We had a great session on Monday with Conductive Education and we were able to meet and work with two lovely therapists but to be honest it’s all very overwhelming. They have given me two detailed lesson plans of all the therapy work that I am to maintain at home. I think it’s wonderful that we have lots of new ideas for physical therapy to support Thomas but it is a lot of work to juggle and expensive (as in not funded) for the weekly individual sessions. A lot of it falls on me as Joe is working long hours, coming home late at night. What I have learned very quickly with cerebral palsy is that Thomas’ muscle tone fluctuates often during the week. Some days he is often very floppy or quite stiff. It can be really difficult on days where he is floppy and I don’t often achieve much with him those days and that’s fine. I go by his lead some days, especially when he’s had an unsettled night which is pretty much why this week is a bit of a downer.

Thomas has been unsettled every night for the past week. Joe and I have been up a few times each night tending to him. Some nights were more straight forward like a poo nappy but others I have no idea! Thomas’ pediatrician wanted him to have a night of Oximetry readings to check on his heart rate and saturation levels (oxygen) while he sleeps. Because Thomas has been in and out of hospitals several times this year, we became quite confident with using one of these machines. It really made me realise that bringing equipment like this into our home blurs the lines a bit when it comes to wanting to have a healthy distance from anything hospital related within the home environment. We will also be using the machine again while Thomas trials his sleeping system which is meant to arrive tomorrow. The machine records everything for the night and then I’m thinking that we’ll be contacted if there was something not quite right. Thomas’ saturation levels do drop a bit low sometimes but only for a brief period. His heart rate is usually fairly consistent unless he’s having a seizure of course!

The connection probe on top.

In action. Ob’s looking good!

Due to Thomas’ low immunity at the moment his eczema has not been healing as well as it normally would. I’m diligent with the creams and bathing but the eczema just seems to be taking longer to heal. It’s a real pain in the butt because Thomas doesn’t like to be touched much and putting creams on him is quite traumatic for him and of course me for feeling bad for upsetting him. I have resorted to putting calming music on and cuddles part way through the creaming process. Thomas absolutely loves his cuddles. He loves to snuggle his head right into my neck and it’s a lovely feeling knowing that this gives him comfort.

This week I’ve also made the decision to cut Plunket visits because our last visit from the new nurse went so poorly. She came late, she had no idea about Thomas’ history, and referred to him as a she multiple times even though corrected. We have had at least 11 medical appointments this month alone, not including playgroup so I’ve decided that Plunket can’t offer what we or Thomas needs. I am going to have Thomas get his checks done with his GP who is a really wonderful GP. I tried to ask Plunket for advice but they seem out their depth with offering advice appropriate to Thomas’ needs. I also made a dreaded call to Parent2Parent too. I made contact with them in May looking for support. They couldn’t find anyone in Auckland so did a national match and told me someone (a support parent) would be in contact. No one ever called. 😦 Anyway, I finally got around to calling them with feedback and it turns out that the person who made the match had left the company and the support parent who was intended to ring me had a car crash! The lady I spoke with was very lovely and apologised because someone still should have let me known otherwise. Being a parent of a child with multiple special needs is lonely but more so lonely when Parent2Parent can’t find someone on their national database to support you!!

We received a letter from ACC. Before I even open up these letters I can feel my stomach turning. They are still working through Thomas’ injury claim and are seeking external advice regarding my care while in hospital. I have been through my own medical notes and it’s apparent that my blood pressure checks were not as closely monitored as they should have been. My blood pressure got ridiculously high while in hospital hence the emergency c-section but it’ll be up to the external parties investigating this as to whether or not my care was appropriate and satisfactory. His claim has been open since birth, nearly 9 months! I think there’s a bit more waiting to be had.

I’ll end on a positive note because despite the challenges, there are some lovely moments – a lovely colleague from Joe’s work gifted us some Christmas lights which we have used to ‘kit out’ Thomas crib. The idea is to put the lights on for a little while for him while he is in a playful mood. In the last month, Thomas has conveyed a definite awareness of seeing bright lights so this is why the Christmas lights are an ideal so that we can stimulate his vision.