Well it has been a while! Just figured it was time to sit down and reflect on the last 6 months. We have had a lot of ups and a few downs, but Harvey is still kicking ass every day!
When I last wrote a piece, it was about my struggles with Harvey’s feeding, the good news is he is officially OFF his tube feeds, and has been since November. It has been very hard, only a few weeks ago he was still the same weight he was back in December. He still can’t handle much foods that aren’t fully smooth, but yet he can demolish solid chocolate! (kids ‘eh?) He is finally gaining now but it has been such a struggle to get here, he is on a calorie additive in his food as well as a heap of dairy free butter to help him pile on the pounds, he also needs to take a daily vitamin to make sure that he is getting what he needs to nutritionally, and I am so proud to say he is up 200g just this last week!
It was looking so likely he would end up needing a G-Tube put in place (tube directly to the stomach rather than through the nose) but I really wanted to avoid that at all costs purely for the fact that I know how incredibly hard it can be to wean kids off a tube when they are dependent on it. I have to say, I worked my ass off to get to this point. I would have to weigh all his food, and work out the calories per gram, then weigh what (if any) was left to work out the calories consumed. I kept a very anal notebook of everything he ate and drank with the amount of calories consumed so I could make sure he was taking what he needed for weight gain, and if he was behind I could supplement by making the last meal of the day a higher calorie amount. He still doesn’t eat very large portions but he is healthy, happy, and finally climbing the growth chart. He is currently just at 8kg now so has just about tripled his birth weight.
Back in November we feared Harvey was due to have a very major surgery called a Chiari Decompression. Harvey has Arnold Chiari Malformation, another thing that is fairly common with people who have Spina Bifida. This is where the cerebellum at the back of the brain is pulled downwards and can become compressed, the surgery basically would have involved removing some of the top vertebrae to take the pressure off the back of the brain. Chiari can come with some horrible symptoms, some of which include pain, headaches, nausea, vomiting, dizziness, numbness in the hands, sleep apnea etc. to name but a few! Harvey’s when it was originally measure had a deviation of 19mm, and when he was last admitted it had progressed to 25mm which is fairly substantial for a child of his size. His is being pulled down to about C3 on the spine.
I brought Harvey in to see a neurosurgical registrar twice to explain my concerns, he wasn’t eating at all, he was gagging to the point of vomiting, he wasn’t sleeping, he was cranky and I had noticed the CSF was building in his back where his closure was done when he was born. Day 1-I was sent home. Two days later I brought him back and saw the same man, I insisted unless he would sign something stating he was 100% happy that nothing was wrong with Harvey’s shunt I wanted a CT scan done, less than an hour later I was already back from the CT. His shunt appeared to be working fine, he shrugged at me to say ‘I told you so’. I was still not satisfied. I came home, got on to one of the Spina Bifida nurses that looks after Harvey and the next day (Thursday) I was in to meet the consultant. He referred him for admission the following Monday for an MRI as it is easier to get an MRI done while admitted. He was admitted and after 3 failed attempts at an MRI under sedation they booked him in for one under general anesthetic and while he was under the GA they brought him to theatre to place an ICP (inter cranial pressure) monitor-this is placed through the skull but not inside the brain and it measures the amount of pressure in the brain to make sure he wasn’t getting high pressure spikes to fully rule out the possibility of a problem with the shunt. They left this in for 3 days and were satisfied he wasn’t having too high a pressure.
Once the shunt was ruled out they brought up the Chiari Decompression, this isn’t a surgery they do if it can be avoided. There were mixed opinions between the Neurosurgical consultants about if they should go ahead with the surgery. Chiari can cause problems with coordination and they felt, as well as a speech and language therapist felt, that this may be the cause of him not wanting to feed. The SALT thought his coordination was off when drinking from a bottle, he was sent for a videofluoroscopy to have a look at his swallowing. Thankfully his coordination was fine, but he has a delayed swallow and does better on thickened fluids so we use a thickener in all his drinks to help him. This scan was the deciding factor to NOT go ahead with the surgery and that day, after a nine day stay, we got home. He still may need the decompression at some point, but hopefully by then he will be bigger and stronger (but unfortunately, also more aware).
Another bit of not so good news we received came in the form of an orthopedic diagnosis. We knew from when Harvey was still in my belly, that he had Scoliosis. His Ortho consultant never mentioned it so we presumed it wasn’t too bad. He recently changed to a new consultant, and unfortunately we found out it is a lot worse than we knew. He will definitely need surgery but can’t have it until he is about 3-4 years old because before that he would be too small. In the mean time, his lungs are being crushed by his ribs. Our hope is that with correct seating (6 months of waiting and we are finally getting his high chair next week) as well as a DMO suit to help give extra support, we can slow the progression. His consultant said that unfortunately for Harvey it is a matter of life and death so if this doesn’t work we will have to try a Halo Gravity Traction. This is sort of like a metal halo around his head, which will essentially be attached to a hoist on his wheelchair to help keep him sitting up and not curving too badly. If that doesn’t work….It has to work….
It’s very upsetting, he is such a smiley, happy, funny, boy. To me, he deserves the world, I just hope that one day he will get a break. He doesn’t deserve this, none of our kids do. It is a kind of helpless feeling, it is literally out of my hands, Thankfully he is one incredibly strong little man, so I know he will come through all the hard times and end up just a stronger person because of it all.
Anyway, now on to the good stuff! Well the biggest development is Harvey can now officially sit independently, so that was sooner than expected! He still falls after a few seconds but you would too if you couldn’t feel below the waist, he is supporting himself entirely by using his arms so as soon as he sees something he wants to grab he falls, it’s very cute. He will learn after enough falls that he needs to keep one hand down for support (I hope!).
He also seems to be getting the hang of his little bumbo wheelchair we were kindly given by a fellow mother of a child with Spina Bifida! We literally cannot wait for him to be zipping around in it. It is so amazing to watch.
We see, and feel him getting stronger (and cheekier!) day by day. The boy they thought may never take his first breath, oh how wrong they were. I am back in to the Coombe to see the consultant who looked after my care when I was pregnant with Harvey so she can see how far he has come. Any excuse to show him off!
Another bit of news was this Mother’s Day he was featured in the Sunday World newspaper highlighting the work Temple Street do for kids like Harvey. We are all quick to point out the flaws in our hospitals, and yes I am not naive, they are flawed, but without Temple Street he may not be here today, and for that I am forever grateful.
Anyway, that’s just a bit of an update, sorry about my over use of punctuation, it is currently Late O’Clock and I am sleepy but daddy is out tonight so mammy is on duty and must remain awake!
They said he wouldn’t,
But he did.
They said he couldn’t,
But he can.
They said he won’t,
But he will.
harveysmammy 