Goodbye NG! Welcome G!

It’s been a month since my last blog update about Thomas and a lot has happened!

Thomas had his first surgery on the 2nd of September. We received the call less than 2 weeks prior and I made a post on Facebook the day before we went in for the Gastrostomy surgery. I thought that maybe it might be cancelled or something. I think I needed that time to get my head around it. I had been waiting for 7 months for that call and I finally got it. I felt nervous, and a little worried because it was actually going to happen. I knew it was the right thing for Thomas but I still felt horrible that he would be scared, confused and in pain.

We had both decided against getting the Nissen Fundoplication procedure as it was never originally recommended by his Pediatrician and his reflux was mangaged well by his medication. He does not have problems with gagging or retching either. The surgeon recommended not to proceed if there were doubts and if the medicine was helping. It is a procedure that can happen later on if we feel he needs it.

http://www.feedingtubeawareness.com/different-types-of-feeding-tubes.html

 

In recovery room, just out of surgery.

 
The surgery went really well. Thomas was discharged the next day in the afternoon. Usually it is about a 3 day stay but Thomas was back to his chirpy self the next day and I had fed him through the G tube and picked it up straight away. Thomas does not cope well when out of routine or his own environment so returning home so early was a great relief. We were so happy to have my mother come to stay for a week to help out. I was really expecting Thomas to have more pronounced dystonic episodes due to the pain but he only had issues following the surgery and that first night. After that, I managed his pain relief and slowly tapered it off.

Mr Chirpy.

Thomas has not been back at therapy yet but he is able to sit in his pram, feeding chair and playing in the sensory room or in bed. We have definitely noticed that he seems a lot happier in general. He is dribbling less too. He is eating the same volume of food topped up through the G tube and maybe a little bit more orally. Thomas has regressed a little with his oral feeding of chunkier foods. He seems to cope fine with soft little bits of pasta or rice but not peas, carrots or corn. These he will sometimes struggle with or will eat less due to tiredness from chewing.

We do not need to check the positioning of the tube like we used to with the NG so that saves time. The site needs to be changed and cleaned everyday. We can still give him his medicines through the tube. The tricky part we are finding is keeping his hands away from the area. Thomas’s range of movement is limited and often repetitive. It is not always controlled either. He has a very strong grip due to his increased muscle tone so we have to keep a watchful eye on his arms and hands. The Safe T Sleep wrap has been an absolute treasure. While he plays in the sensory room he has a smaller blanket around the area. I have recently purchased some G Tube pads from TubieLove. We’re not using them yet while he heals. They are super adorable.

 
It has been a big relief for us all I feel. I can see that Thomas is not as uncomfortable. He seems free. I really think the NG caused him a bit of grief. The plasters were really damaging his cheeks. It has made feeding a bit easier. My big focus now is to get the G Tube healed!

 

Funny boy!

  
 

Lots of updates…

It’s been pretty busy in our household lately. There are so many different focuses at the moment for Thomas.

Everyday is fairly routine but within that day there are lots of different things we need to work on. So many in fact that not everything gets seen to and I feel the pressure often due to this. I know that I cannot achieve everything I set out to achieve everyday but I like to feel that I’d like to try. If you catch me after a bad night with Thomas, those are especially harder days. 

You see, most children develop and achieve certain milestones and move onto something else. With Thomas, I’ve learnt pretty abruptly to leave all those expectations behind. I stopped the plunket visits early on and reading typical child development books because none of that could apply to our situation anymore. I was living with no expectations except to just see how things develop. For the most part of a year, it was extremely tough watching Thomas having seizures, develop dystonia, struggle with feeding, reflux, eczema, and the crying. I’m seen a lot of that so much so that I’m de sensitised to it. I don’t freak out about seizures, unusual spasms or aggressive crying because it has become a norm for us. Don’t get me wrong, seeing all of that does upset me and make me feel powerless to help. But I have learnt that freaking out does not help the situation at the time. It is best to focus on comforting Thomas. 

I get by most days by prioritising what needs to be done and what can wait another day. Like washing, that can definitely wait!

What I try to focus on with Thomas has often been the same for many months because Thomas needs more time to work on certain things. I’ll list those below with how each is going.

• We have been working on using his new cause and effect switches from the Speech Language Therapist. He seems to have clicked onto this idea pretty quickly. He will press it and either listen for it or respond.
• His sensory room that gives him independent playtime. He enjoys this but does not spend much time in it like he used to. He seems to be getting bored being on his back.
• He has his standing frame to practice bearing weight on his legs and hips. Thomas is still a little weary and unsure during this. There is a lot of crying and fussing as he gets used to new things. He does seem to want to push on his legs and lift his head more which is pleasing.
• A big focus is on feeding and keeping a track of how many mls water, formula, and solids and ensuring they are given timely. Thoma has been eating chunkier solids for about a week now which is an amazing development for him. He used to gag on chunkier foods but is now starting to chew a little first before swallowing. His cough reflex is strong so if food gets stuck, he seems to be able to clear it independently.
• Working on cup feeding to encourage more taken from the cup instead of through the tube. He seems to tolerate more when he is thirsty and more alert. Usually he can tolerate anywhere from 20 – 60mls. He prefers water and nothing else. We have tried a few different liquids but he always enjoys the water. So refreshing!
• I try to get Thomas on his tummy often during the day. He is enjoying being off his back and able to get his mouth to his hands easier this way.
• Assisted rolling, side lying, sitting with bearing weight on arms and hands, and bringing hands midline continue to be a therapy focus. Depending on how Thomas is feeling, we can get varying results however in general I believe that Thomas is developing an awareness of what he should be doing and is trying to attempt certain physical maneuvers independently like trying to roll and swing his hips over. His head control is improving. He wants to lift his head and hold it up for longer periods and at times look around the room. He seems to be opening his hands more. His right side in general is tighter, therefore weaker than the left side. 
• Vision therapy such as assisted play with me. We use certain IPad apps, playing with light up toys or bright coloured toys. I have noticed him using his peripherals a lot to try and look out of the left side at people, or things. He is starting to show that he can hold his focus for maybe 2 seconds or follow an item but this fluctuates depending on how alert he is.
• I have posted photos of Thomas on his Facebook page where he is often getting stuck in uncomfortable positions in his cot. To address this we have been using the Safe T Sleep to strap him safely in the middle of the cot. He transitioned straight away with no issues. The only problem now is that we only have 1 because they are not cheap and he’s been out of it for a day or so while it dries from a wash. Bit of a hassle but not the end of the world!
• Thomas is still attending regular twice weekly Conductive Education sessions. These are going really well. He is still receiving individual sessions as these best address his needs. 
• No news on the Gastromy surgery. We are still waiting! Patiently…
• Another focus that I am trying to be consistent with but sometimes let it slip is working on communication with Thomas. Things such as Objects of Reference that are small physical items or words I use repeatedly for certain situations so to help him learn associations and be prepared for certain things. At the moment it is letting him touch a nappy before a nappy change, touching a spoon before eating, or applying gentle pressure to his thighs when he is on his back to let him know he will be picked up or putting my hands under his arms and saying “up, up, up.” This way he knows he’ll be picked up. It seems to me that he is learning to remember these prompts because he will still and wait or when getting up out of a chair he will try to push himself out a little. He is also very cued in to his auditory environment. It’s not that he has super hearing. He’s just very tuned in and knows what certain sounds mean.
• Orally, Thomas continues to chat and babble away. He sometimes says words clear as and other times it is a bit harder to decipher. Words that he will say include hello, more, no more, mum, muma, love you, hello mum, no, and bang. He does not always say words functionally but he sure likes to practice them. Words he uses functionally are love you, mum, hello and more.

Thomas babbling and chatting.

http://youtu.be/ozArPSSh_jE

Thomas using the switch for the first time.

Hope you enjoyed the videos. Any questions, feel free to ask because maybe I left something out?!?!

Today in Auckland it’s raining so best to keep in doors. ☔️ 

Have a lovely day 😀

Life with Thomas

I am thankful to everyone who reads my blog that has offered kind thoughts, love and support. I know that the blog is an important tool for keeping family and friends informed and to connect with people from around the world who are either years ahead in the unique experience of raising a child with complex needs or maybe only recently introduced to it. I am no expert on every child, only my own son.

I really wasn’t sure whether to write about such a sad, and sensitive, and private part of our journey re: the Advance Care Plan post, but I feel it is important to share so to educate and make people aware of all facets of our journey. I wrote the post so to share my feelings on the matter.

Because Thomas has been unwell for the last month or more, and with winter coming up, it would be an appropriate time, the Pediatrician felt, for us to discuss an Advance Care Plan should Thomas’ health deteriorate. 

Currently Thomas is on the mend. He has recently started a new medication to treat his chronic constipation and consequently faecal impaction, with Movicol. He is on a week of increased dosage to flush everything out. He was very blocked up! To the point that the Pediatrician could feel it upon physical examination and when examined, Thomas’ dystonic episodes occurred which now tells us that his dystonia was fuelled by the pain and discomfort of the constipation. We are now on day 2 of 7 of the flush and it is definitely working!!!! Because of this Thomas has really bounced back to himself, mostly, which includes playing in his sensory room more often, sleeping more, eating without dystonic episodes and chattier and smilier. We are so relieved and happy to see him getting back to himself again. I understand now that he must have been in a great deal of pain for quite some time. 

Although Thomas is on the mend, we did have a little scare last night where we spent many hours in ED. All is well now. He had an NG feed and had a little vomit afterwards. He seemed to be choking a little bit. He had laboured breathing and seemed more limp than the usual. I was advised to take his NG tube out because I was not able to aspirate from his tummy and to take him to ED to have a new one put in as well as check his chest for aspirated fluids. He had an X-ray which came back fine. A new, much longer NG tube was put in and Thomas needed to be monitored for an NG feed. He seemed fine, although distressed by the other crying children and poking and prodding which infuriated his dystonia! We think the reason we were not able to aspirate fluid from his tummy, is because the tube must have been slightly dislodged from the vomiting. I was only drawing air out even though he’d just been fed. In theory I should have been able to draw out a little of what he just ate. 

Sorry if this is too much info! It is a bit yicky sounding but it is part of our feeding routine. The reason for drawing a little fluid from the tummy is to always check the NG tube is in the correct place in the tummy. Once fluid is drawn from a syringe from an opening of the tube, you then squirt a little onto a pH testing paper that tells you if it is okay to go ahead and feed or not. The photo where I am holding an end is the end that sits in the tummy. If you have any questions or want to learn more about it please feel free to ask. I am comfortable talking about it. The goal now is to teach other family members who are keen to learn how. 





Downhill, fast.

Things went downhill, and fast. Since my last blog post everything was ticking along quite smoothly. Thomas was enjoying his paddling pool, was getting pretty interactive and his therapy sessions were going really well. He had been having a tough time with 4 top teeth coming through but once they had broken through, he still seemed not quite himself. He began having the odd seizure and seemed more irritable throughout the day. We made contact with his neurologist who then doubled his seizure medication. The seizures seemed to ease off but Thomas did not settle within himself.

Thomas has always had involuntary muscle contractions but they seemed more pronounced and often. His involuntary movements include his neck repeatedly twisting to the right, his jaw clamps shut and his arms and legs stiffen and he sometimes holds his breath for 1-2 seconds during these episodes. He would do this during breastfeeding and it wasn’t that he was going through a biting phase, it was involuntary. He would be latched, suckling away and then, without warning, his body would tighten and yes, his jaw would clamp shut tightly. I persisted for a while through this and every time I breastfed, I was extremely nervous and kept my finger on the ready. In the end, it got to the point where he was not getting a decent feed because he kept clamping so much which led to our first hospital stay for dehydration.

Thomas miraculously took to the bottle that night in hospital so we were discharged the next day due to this. Now I realise that he was desperate and that bottle feeding long term was a difficult, tiring act for Thomas. He only lasted less than two days getting sufficient fluid from a bottle and became irritable again refusing solids, bottle, and cup. I knew we only had one option left. I really didn’t want it and I wasn’t ready either. But we had no choice in the end.

We were then admitted again a week later. This time for dehydration and a ‘plan’ to address the lack of options for getting fluid into Thomas. The plan was to have Thomas get an NG (nasal gastric) tube put in. This was purely for fluids if he refused cup or bottle. We were still feeding him puréed solids and the yummy tasting medicines orally. In order to be discharged from hospital I was required to observe x amount of feeds and be observed for x amount of feeds as well as give x amount of feeds independently with no supervision. Turns out it is quite easy to do. Changing the plaster on his face to hold the tube in place is not easy. The fear of him pulling it out by accident  will never go away. The NG tube is a short term plan until Thomas gets a G Tube which requires surgery. This will no doubt happen within the next 6 months. 

Since this discharge Thomas seems to have got worse. He has been having the odd seizure, and loads of dystonia episodes. For the last few weeks, it has been really rough. He has been crying or screaming most of the day. Hence why I haven’t written in a loonnnnggg time. I have been putting updates on his Facebook page but it has occurred to me that I haven’t on the blog. With all the crying and screaming, Thomas stopped showing interest in his sensory room or play in general, he was waking in the night stiffening and only wanted to be held. We grew desperate waiting to hear back from the Neurologist who is a very busy lady understandably, so, we went to the GP. She was fantastic! She got on the phone straight to the neurologist with the okay to start a new medicine. It is a strong muscle relaxant, Baclofen. He has been on it for over a week now and it does seem that he is having less dystonic episodes. However, he is still crying and screaming in pain. I believe it is constipation, with his low muscle tone, he struggles to move his bowels. He will spend a whole day pushing and nothing comes out. I really feel for him. I know he is in a great deal of discomfort and pain so I am giving him Pamol and Lactulose and lots of fluids. We are seeing his Pediatrician tomorrow to hopefully look at a stronger medicine to treat the chronic constipation.

I really hope that we are able to find out what it is for sure that is causing Thomas so much pain (even though I think I know, it is not confirmed!). I just want my boy to be comfortable and happy again.