When Josh first returned home after his bowel surgery I noticed a real change in his demeanor. He was so happy, content and easy-going. He wasn't exactly miserable before the bowel resection but in retrospect he was definitely more irritable and cranky. I remember one of his PICU nurses had told me that she felt Josh would be a very content baby once his health issues were addressed. She was bang on - he is such a sweet, calm boy, but he is very shy around new people and he's very cautious. His physio and occupational therapy sessions can be a bit of a challenge because it takes him at least half the session to warm up to his therapist.
Life was pretty busy for the first 2 1/2 months or so following his discharge for a few reasons:
Reason #1 Follow-up appointments. It wasn't uncommon for us to be at CHEO 1-2 times per week for an appointment of some sort. By December it had settled down a bit to one visit every 2 weeks.
Reason #2 Josh was breastfeeding constantly. Once Josh's bowel obstruction was dealt with and the initial discomfort of surgery had subsided, Josh was feeling 'normal' for the first time since he was born. And he was hungry! He was breastfeeding every two hours, at least. Sometimes he wouldn't even make it two hours before wanting to eat again, and thanks to the frequent feeds he was finally starting to pack on the pounds. Josh had gained more than 4.5 lbs in the first month out of hospital. And forgive me for my candor but my breasts paid the price for that amazing weight gain :) The constant feeding took its toll on my poor nipples which were soooo sore. After every breastfeed I swore that I was done [with breastfeeding] and that I couldn't do it any longer. Of course I kept with it though - I couldn't stand the thought of giving up breastfeeding after working so hard to maintain it with pumping during his hospitalizations. At any rate, he ended up refusing me when he was about 5 months old and so that was the end of breastfeeding. I was sad that chapter of our relationship was over but the fact that it was his decision and not mine made it easier to deal with.
Reason #3 It was the holiday season. The holiday season is always a little busier what with holiday baking, Christmas shopping, and so on and so forth. But then adding a 3-4 month old baby into the mix with everything else that was going on it was hectic, but I was loving every moment of it!
This is something we made for Dr. Maharajh and his surgical team as well as the PICU team as a 'thank-you' for all that they did for us. We delivered it to them just before Christmas. It reads:
It was your love and compassion that guided our family through a difficult time.
It was your dedication and diligence that gave us the strength to look towards an uncertain future with optimism.
And it was your skill and expertise that mended our son's heart and gave him the chance to live the life that he was meant to.
We thank you from the bottom of our hearts for all that you are and for all that you do.
We will be forever grateful.
Since Josh's first discharge from hospital he had been followed by Dr. Halton in the thrombosis clinic for the treatment of the clot in his right femoral vein as well as the clot in his brain. The clots were being treated with enoxaparin injections twice a day and Dr. Halton would see Josh weekly initially and then bi-weekly once the dosing was stable in the therapeutic range.
While under Dr. Halton's care Josh received blood work to investigate if he had a clotting disorder responsible for causing the clots. The tests all came back normal - no clotting disorder.
In mid-December Dr. Halton arranged for a follow-up MRI through neurology to check on the status of the clot in Josh's brain and she also ordered an ultrasound of his groin. The ultrasound was done first and it showed that the clot had dissolved but the location of the vein where the clot had been was narrowed and collateral circulation had developed to bypass the area. No big deal really, Dr. Halton just said that we have to watch that his right leg doesn't get too much bigger [in girth] than his left. I guess blood flow back to the heart is slower in his right leg due to the collateral circulation.
Next was the MRI. Since Josh had to be perfectly still while the MRI was done he had to be intubated and sedated for the scan. Once the scan was over and Josh was awake, we had to stay for about an hour for observation but then we got to head back home.
The MRI showed that the clot had dissolved which was excellent news. It meant that we could stop the injections of enoxaparin and since Josh didn't have a clotting disorder, he no longer needed to be on a blood thinner and then therefore no longer had to be followed by the thrombosis clinic.
Even though neurology hadn't planned on doing an MRI, of course they took a look at the scan to see how his brain looked. They had wanted to do an MRI post-op after Josh's heart surgery as being on the heart and lung machine can cause brain damage and since Josh already had brain damage he was at a greater risk of sustaining more damage. Josh recovered so quickly after the surgery that they never got a chance to do another scan.
Anyway, Josh had his first follow-up with neurology in January so Dr. Macmillan went over the images with me. In terms of brain damage the top of Josh's brain and the bottom of his brain look good - no damage. But all the middle layers have varying degrees of damage - mostly at the back of the brain (occipital lobe) and to a lesser extent along the sides of the brain (parietal/temporal lobes). The left side of his brain sustained more damage than the right side. In terms of mild, moderate or severe, Josh has a moderate amount of brain damage.
I was told that MRI images are more accurate when a child is at least one year old because the neurons are coated with myelin and the images are clearer. At least I think that's the reason - I don't quite recall. But at any rate the images taken in December (at almost 4 months old) were still able to give us some information.
The MRI images showed that the right side of Josh's brain actually looks quite good. There's a little bit of scar tissue at the back, but otherwise no obvious abnormalities. The left side didn't look as good. There is quite a bit of scar tissue and one area at the back was so damaged that the brain tissue has actually atrophied (shrunk). I really didn't like to see his brain shriveled up like that. I found it quite disturbing. I tried not to focus too much on the MRI images as Josh seemed to be doing so well, but the image was hard to shake. Based on the areas damaged possible deficits include: problems with vision, difficulty with movement, difficulty learning and he is at high risk for developing epilepsy.
The rest of the neurology appointment went well. Josh had shown no signs of seizure activity since his first week in the PICU so Dr. Macmillan decided to start weaning Joshua off of the phenobarb. That was an absolutely awful experience! It turns out that Josh was really sensitive to the weaning process and it was just a horrible experience. Josh was already a bad sleeper -waking several times at night- but now he was waking every hour! It was a really bad month - I was exhausted.
About one week after his last dose of phenobarb Josh was back to his normal self, thank goodness! Josh has been off the phenobarb for 9 months now and so far no seizures. He is at high risk for the seizures to return (he would then be considered epileptic) because of the brain damage, but if he makes it to 6 years old without any seizure activity then the chance of developing seizures drops significantly. Fingers crossed!
By the end of the appointment Dr. Macmillan had noticed that Josh's right hand had been clenched shut during the entire appointment and he was a little concerned since Josh was at an increased risk for developing a movement disorder. He ordered a physiotherapy consult, an occupational therapy consult and he referred Josh to an infant development specialist - all through the Ottawa Children's Treatment Centre (OCTC).
Once the neurology appointment was done we had a three month break from appointments, which was great. Josh still went to see his pediatrician for regularly scheduled check-ups/immunizations, but we were no longer running to CHEO on a weekly or bi-weekly basis.
Things picked up again in April when those consults and referrals began to materialize. The infant development specialist (Dr. Ponesse) performed an assessment and concurred with the need for physio and occupational therapy and he also ordered a hearing test through audiology [at CHEO] as well as an ophthamology consult. He also referred Josh to the infant development program at the OCTC.
Physio and occupational therapy both started in May. The physio assessment revealed that Josh was quite delayed in terms of gross motor movement - he was way below the 5th percentile for his age group. He had strong legs, strong torso and good head control, but his arms were weak and he would not bear weight on his arms at all. So he could sit independently and he could stand with support, but tummy time - forget it. He hated being on his tummy and whenever I tried to encourage tummy time he would just put his arms and legs up in the air and cry.
Josh went to physio once a week from the beginning of May until the beginning of July. Every week Josh would make small gains and slowly began to build strength in his arms. By mid-June he was finally able to push himself up on his hands [while on his tummy] and support himself - an achievement usually made by a 4 month old. By the beginning of July, Josh was on the verge of crawling. His therapist decided to give him a three week break from physio to see if he could get himself crawling. He did! After teasing me for weeks Josh finally started crawling one week before turning 11 months old. And he hasn't stopped moving since!
Josh still goes to physio once every 4 to 6 weeks just to make sure that he's still progressing as expected. He is currently in the 25th percentile for gross motor movement for his age group and he has been following that percentile curve since July. If Josh continues to follow that curve, he'll probably start walking around 16 months. However, Josh is a very cautious boy so he may take a little longer. It doesn't matter to me really. Josh will walk when he's ready! He will likely be discharged from physio once he starts walking.
The occupational therapy assessment that was performed in May revealed that Josh was within his age range for fine motor movement however, he had trouble performing tasks that required the use of two hands at the same time (using both sides of the brain at the same time) and he was using his right hand for fine motor movement and his left hand for gross motor movement. Shortly after this assessment his therapist accepted a new position at the OCTC so Josh had to go back on the waiting list for a new therapist.
He finally got a new therapist in September and since it had been 4 months since his last appointment she decided to do another assessment to see if the same issues were still present. Josh is still within his age range and he doesn't seem to have as much trouble using both hands at the same time. He definitely prefers to use his right hand to perform tasks, but will use his left hand if encouraged. His OT decided that she will continue to follow him every 6 weeks or so just to make sure that no issues develop as he is at high risk for a movement disorder.
I don't really have any concerns with Josh's movement, but I find I do often struggle with what's 'normal'. Like when is it 'normal' for a child to start clapping their hands or pointing at objects? Josh does clap his hands now, but it was something that I had to work on with him for quite a while before he was able to do it. He still doesn't point at objects. I know he'll do everything in his own good time, but I sometimes worry that I'm trying too hard to teach him things that he's not ready to learn, or on the other hand, not trying hard enough to teach him things that he should already be able to do. Does that make sense? I know Josh will learn things at his own rate but sometimes I stress myself wondering if I should be doing more to aide in his development. At any rate, Josh is doing awesome! I'm so proud of him.
In May Josh had a hearing test done in the audiology clinic at CHEO. He passed with flying colours :) He also had a vision test done with an ophthamologist at CHEO. A vision test on a baby is no easy feat. I have no idea how they do it, but the doctor was able to determine that Josh is mildly nearsighted. He will need glasses eventually but since he really has no need to see at far distances yet, glasses are not yet needed. He has another appointment in December so we'll see what happens at that one.
I'll mention once again that the nearsightedness has nothing to do with Josh's brain damage. It's something that he would have had regardless of his health problems. There is still a chance that the brain damage does affect his vision in some way - how the brain interprets the visual stimuli may be dysfunctional in some way, shape or form but there's no way to test for that. We just have to wait until Josh can talk so he can tell us what he can see (blurred images, double vision, etc).
Just by observing his behaviour I'd say it's safe to rule out the possibility that he can only see light or shadows (as this was a possibility). I would even go as far to say that [except for the nearsightedness] his vision is near perfect. He can see the smallest little objects and pick them up with no problem. He has even seen and grabbed a single strand of hair that was hanging in front of my face. Amazing!
The only thing that I have noticed lately is sometimes his depth perception seems off. For example, if he's trying to stack some blocks, he'll go to place a block on top of another and miss the block either partially or completely. After a few attempts he'll eventually succeed (if he hasn't already given up in frustration). Again, classic example: is this a part of 'normal development' or is it a sign of a neural deficit. Don't get me wrong, I don't drive myself crazy trying to figure out what's 'normal' but these are just some of the things I deal with.
From a cardiac standpoint Josh is doing fabulous! He had a cardiology follow-up in November and then again in June. A cardiology follow-up includes an echo, an ECG, vitals and a height and weight check, and then a visit with his cardiologist. Both appointments went really well and his cardiologist, Dr. Gow, is really pleased with his heart function. He said that Josh has had a really good surgical repair and the long term outlook is good. The last echo in June showed that there is a little bit of increased pressure in the pulmonary artery and some mild leaking at the valve, but no real cause for concern at this point. Developing a complication is always a possibility at some point down the road. Fingers crossed that that's a path we'll never have to cross but it's certainly something that always in the back of my mind - as it is with all heart moms, I'm sure.
Amazingly Josh is currently medication free, sort of. We learned in May that Josh has asthma but only develops symptoms when he has a cold. So whenever he starts to develop a cold I start him on his Flovent puffer twice a day and then he has Ventolin for immediate relief as needed. Otherwise Josh is a happy, healthy little boy and except for the faded scars on his chest and his lower abdomen you would never know that his life has been full of so many challenges. He truly is an inspiration - my little miracle boy!
Thank you for taking the time to read Joshua's story. I hope you enjoyed reading it as much as I enjoyed writing it.
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