Immunity | Minding Thomas

Yip the title sums up the past week with a new, most unpleasant milestone achieved.

Thomas’ first official cold. 9 months old. Not bad really.

I have to say that I fully jinxed it too. I was literally having a conversation with Joe a few days before it all started saying how we are fortunate that Thomas hasn’t had a cold yet considering that he has immuno-suppression in all. Bugger!

I think that the last few posts Thomas hasn’t had a great time with his eczema and constipation so it’s just been an add on with the addition of the cold.

I don’t know what it’s like to have a typical developing, healthy child with a cold but I’m sure it’s not quite the same experience. I’m sure that it’s the same in the sense that it can make any bubba upset (including parents!) and most especially clingy needing lots of comfort like cuddles. Thomas has certainly been wanting more cuddles.

A plain old cold is a dangerous threat for Thomas due to his immuno-suppression. He’s been put on antibiotics as a safety precaution even though he doesn’t have a fever. It’s really scary because if it develops into a fever we have to take him straight to hospital. For the first time ever, Joe and I kept Thomas in our bed so that we could keep a close eye on him. Just for one night. I didn’t sleep. Thomas was twitching in his sleep and kicking me non-stop! Another scary side effect of Thomas being sick is that his tightenings have come back. Thomas had these tightenings when he was having his infantile spasms. They look like exaggerated startle reflexes although Thomas cannot control when they come on and they are frightening to observe. Thomas also gets distressed when they come on. His whole body stiffens while his legs and arms extend outwards. When he stiffens it can be for 1 – 3 seconds and during this time he holds his breath. We were able to see his pediatrician and she was able to observe this. We believe that it is more likely a movement disorder. He has another EEG coming up soon in October to check for infantile spasms. Because Thomas is not feeling so good, his eczema and constipation have flared up and the tightenings have been waking him or stopping him from drifting to sleep. His whole body tone has really fluctuated this week between really floppy to stiff.

As I write the above I am aware of how it may all sound but for me the purpose is in tracking and recording how Thomas is developing along his journey. Some of it good, some of it not so good.

His pediatrician is referring Thomas to a dermatologist just to see if there is anything more we can do for his skin. The skin test showed no food allergies. He has also been referred to have another xray sooner than planned. He is supposed to be having 6 monthly hip/pelvis xrays for subluxation. He isn’t due to have another till next year sometime but the pediatrician is concerned about his right hip. His legs both point one direction and lately they have not been straight. Sometimes his legs do scissor and boy are they tight. Makes for very difficult nappy changes!

Now, something positive!

Thomas is able to hold onto the shakers and sometimes he gets them to his mouth. It is the most amazing thing ever! At Conductive Education, his teacher gave him two shakers to hold. Of course I thought he’d drop them straight away like he normally does. But no! Joe and I looked at each other in utter surprise but also glee. Thomas held onto them for quite some time. So at 9 months, Thomas can hold onto a shaker and sometimes bring it to his mouth. We went and bought some nice bright coloured shakers and I have been getting Thomas to play with them every day. He is now quite content to play with his shakers. For me, the most awesome part of all this is the cognitive development that is happening. It is most magical to see how many steps it takes to achieve something such as this. Such as; Thomas is aware of the shakers being there in his hands, he knows to hold onto them which requires a tight grasp, he knows to move them in a specific direction to his mouth, he knows that his mouth will make contact with the shakers and where his mouth is. It blows my mind! I’m so proud of Thomas. I know that he’s been so determined to independently get something or anything to his mouth for oral stimulation. And of course, some pics of his awesome achievement.

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.