A big happy birthday wish to Aunt K! We all love you, miss you and wish that you lived MUCH closer! Maybe one day A will be able to talk you into it! hahaha
So my little man is sick. The last two nights have been ROUGH to say the least. He has a pretty bad cold and today started with the fever. His cough is not sounding very nice either and he is just plain grumpy. I feel so helpless because there is nothing I can do to help make him better. It doesn’t help that he cannot have any meds to help with the stuffed nose, coughing and sneezing because he cannot have decongestants.
Yesterday we were at McMaster for his GI appointment. I had still never heard from the respirologist last week and yesterday I was hoping for a plan. Well actually that WAS the whole idea of seeing respirology and then GI. But as is no surprise the two had not even discussed A yet. Ugh.
So I had asked about possibly getting a g tube placed to try it out with A. Sure was the answer with the added “you are taking a risk….” Why is it that I always feel like I get stuck in a decision because no one wants to back me with it?! “Why do you want a g tube?” That was the next question. Well for starters, the gj tube was supposed to be temporary and it has been 20 months. Secondly the kid never feels hunger because he is fed 16 hours a day. He wouldn’t even know what hunger was if we were to stop feeding him. With a g tube I hope to get down to feeds every four hours or so and then work on oral feeds. It is kind of hard to get a kid to eat orally when he isn’t hungry. Maybe hunger is going to be the key to helping him do oral feeds. We all know that he was a good feeder before the tube so why not again?
Now I know that the gj tube was done because he was admitted into the PICU with life threatening events most likely due to reflux, BUT he has still has those spells with the gj. To me I feel that if we go to the g tube and he starts with the spells, then at least I can say that I tried and I will know that it isn’t possible. However without trying we will never know.
So now the plan is that the respirologist will call me in the next couple of weeks and we will see where to go from there. His GI told me to ask for the next available appointment to come back. LOL Well that wasn’t until March! I am not waiting until March to discuss things further.
On our way out we stopped at the NICU and got to see A’s primary nurse Danielle.
Last night was the first Leaf game so daddy and A cuddled and watched the game. Well some of it…
On a final note for today, I did hear from the doctor in London the other day about A’s MRI. A has mild PVL with a lot of white matter around the ventricles in his brain. English you ask? I’ll dedicate my next post to that!
Well the past couple of days have been pretty busy around here. Saturday of course was the picnic and then on Sunday A and I headed out for a birthday party. We went with grandma and grandpa out to my Aunt and Uncles house to celebrate my cousins 18th birthday! I can hardly believe that she is 18 years old! She absolutely adores A and is wonderful with him.
I took A swimming in their pool and it was SO nice! 90 degrees! Of course A had a great time, he loves the water and could stay in all day if you let him.
I was also putting him up on the side of the pool and then taking just his hands before pulling him in. He LOVED that and could have done that many more times than what he already did!
After getting out of the pool because he looked pretty purple he went and spent some more time with Nicole. She also has a working dog named Mr.G so she had him come out to meet A. I don’t think A really realized it was a different dog than the one that he has at home.
Hope you had a great birthday and I will be thinking of you tomorrow at your prom! You are going to look stunning in that dress!
Yesterday was our appointment with GI at Mac. We didn’t really get any further than where we have been. I went into the appointment willing to give in to trying the cisipride for his reflux. However, after seeing the saturation trend that A had done she said she was not comfortable putting him on this med. Ugh.
The fundo was brought up again however with that I have not changed my mind at all. I am just not comfortable with the idea and would feel awful if I gave in to doing one and the results were not good. I am also frustrated with the fundo because that should be the absolute last resort. Well there are still plenty of things that we have not tried with A. For the most part, we have never seen a pulminologist which blows my mind because he came home with a monitor and on oxygen. So she is giving me a referral to see a lady who deals with lungs/reflux and we will go from there. I know that I was told that his lungs are patchy, but I want that looked into before consenting to the surgery. IF his lungs were getting patchy from aspirations then obviously I will have to look outside the box at what is best for him in the long term. And like his GI said, if his lungs are okay then we can kind of settle down a bit about the whole reflux issue.
Today I also got a call from Toronto Sick Kids to see the pediatrician there. So I am excited for that appointment in hopes that maybe we will finally get somewhere with answers and help. It will also make things easier to get referrals to doctors there that I need/want to see. I will keep you all updated on how that goes.
Well today was the day that we went to Mac to see A’s GI doctor to try and figure out what to do about his reflux. With all of A’s issues it is difficult to figure out what is going on and when. I have looked back through my journal, and A had his tube changed on February 15th. On the 17th the vomiting of formula started. On the 21st of February he was admitted to hospital with vomiting, fever and a ton of movements with agitation. He had an x-ray at that point as I was concerned that something with the new tube wasn’t right. However things looked okay. I had asked for a contrast study but they do not do them in Guelph. Go figure.
Anyways, it seems that at that point all of the issues really started. So, his GI doctor said that she is going to put in a form to have a contrast study done to see what is going on with the tube and if it is in the correct place. I had told her my problems that I have had with a certain radiologist and she knew exactly who I was talking about. There is also the one nurse, and the same thing. She knew who I meant. I find this very sad that a doctor knows who I am speaking of. This obviously means that more people have had problems with them. I just wonder why nothing is ever done with people like this. So I should hear this week when the contrast study will be, she said hopefully next week. She also said that she wants to be there as well so I was happy to hear that.
Now, if the tube looks a bit off then she said they will change it and see how things go after the change. If things are fine then we will either have to try a motility drug called cisipride which I am not keen on. It is NOT available on the market and has to be special ordered. It was causing cardiac issues in babies/children who were taking it. So to get it, A will have to have an ekg and then the government has to approve the drug for him. I also would have to sign forms to get it. Then one month after starting the drug he would have another ekg.
If we don’t go that route, it looks like we may have to go the fundoplication route. This is also something that I do not want to do. But with the spell that he had on the 4th, it is very concerning and something needs to be done. So we will see what happens. I am not thrilled with either decision that I will have to make.
A has been much better today with the vomiting than he was all weekend. We were supposed to go for a playdate with Alina and Sophia before seeing GI but we kind of mixed up the dates. However I would not have ended up going as I was not feeling the greatest today. I think that A and I both have had some sort of stomach bug happening.
We stopped by the NICU to see if anyone was on, but no luck again today. I have been waiting for A’s first neo doc to come back (he goes away for months every year) but he had already gone home. When the front desk paged him, he called and wanted to talk to me. So we had a nice chat for about ten minutes. He is a wonderful doctor and we were SO lucky to have him overlooking A’s care for the first good while. I cannot wait to see him again as it has been about six months, if not more.
Some exciting news, A is getting TWO more teeth!! I have been wondering lately why he has not got any new ones in so long and sure enough I noticed the one last night. The other one you can feel. They are both on the bottom, so that will be a total of eight teeth!
Yesterday when A’s auditory verbal therapist was here to work with A, I was giving her the usual update and told her about A’s first word. I was a bit nervous but I told her and she was thrilled!! She is happy that he is making new sounds and like she said, he doesn’t know what it means so it is not a big deal. She actually said to even encourage it if we can. When he says it, we are supposed to show him a truck and say “yes, truck”. (He has not said it again anyways).
I told her about A’s spell and she did warn me that sick kids might not do the implant if he isn’t stable. So that was a bit of a bummer, but at the same time I understand their concern. Every time that he is put under is a risk already and with a major surgery it makes it more complicated. So we will just have to see how that all works out as well.
Anyhow, some pics from today….I got a ton of smiles today!! YAY!