Well let me start off two weeks ago today. I got a call from A’s chest team saying that they believe that he just might have cystic fibrosis even though his sweat test that we did in March came back negative. WHY? Well because of the pseudomonas. And if he comes back negative for cystic fibrosis then they want to look into primary cilliary dyskenesia. So a lot of people have been saying “well at least they are doing what they should be now.” Yes, very true, BUT they are only looking into things now because of the pseudomonas. That’s it. I have been telling them for YEARS that they need to look closer at his lungs. In my mind it is the ONLY thing that they have not ruled out 100%.
Last Monday we headed to Sick Kids. We were told to not be late for our appointment as they would rebook us and that would be it. We have been waiting for this genetics appointment now for over a year. Anyhow we were there on time and placed into a room. A nurse had come in and took a little bit of information down about A and left telling us they would be right back. This was at about 1pm. At 2:30pm I went out and asked the man at the desk if we were forgot about. I mean for real, one and a half hours sitting in a room with a child that usually is napping at this time?? He told me the doctors were probably in the back room talking about A. Hmmmm well they didn’t know much yet, how could they be talking that in depth about him? That so wasn’t the case.
Guess what time we finally saw the doctor? 4:30pm!!!!! No apology, nothing! I was not too impressed and can’t believe that a doctors office can get THAT behind. Just not right at all for families to wait this long.
Anyways, we talked about A. He had read his files. Well some of them. He would need a year to read everything. He feels that something else is going on with Ashton but again just has no idea what or where to begin. One of the things that he was really hoping for was a new MRI. Unfortunately this is not going to happen as A has his cochlear implant and cannot have an MRI. The only way this would be possible would be to remove the implant, do the MRI and then replace the implant. And there is not a chance that I would do this to him!
So we left the appointment to head down to get a bunch of bloodwork done for this genetics doctor as well as the gentic bloodwork for the cystic fibrosis. When we go back to this doctor in 6-12months we will discuss the results as well as talk about doing biopsies and a spinal tap to check for neurotransmitters. Nothing like moving slow eh?
In other news. We had H’s service here on Sunday, Mothers Day. It was perfect for us and I feel much more at ease with everything. I definitely needed to do it to help me heal. To ease the pain. To put him to rest. We did a balloon release for him at the end of the service which was really awesome. I had pictures laminated of him and we attached one to the balloons before they were sent off. I also mailed out a ton for people that wanted to be a part of this for him. I have had six different people email their pictures already of the release that they did and WOW how touching. I cry every time I look at them. It means so much to me that people care enough to want to do this for us.
I will post the pictures we took soon…I have no space left on this blog so I am trying to figure that out!
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!
A HUGE happy birthday to Alina and Sophia today! They are now 2 years old and both have made amazing progress since being born at 26 weeks gestation weighing 810 grams and 790 grams respectively.
I can’t wait to see you guys again and big hugs and kisses from A and I!
So Thursday was our BIG day in London with the movement disorder doctors and the neurologist. I had been worried sick about this appointment but at the same time I was eager to find out what his MRI showed from McMaster and then the new one that he had this past May at Toronto Sick Kids.
I had left here at 2pm for the 4pm appointment. Of course there had to be a huge accident so I didn’t get there until 4:20pm. I get into the room and all of the docs come in. They said “well we have some bad news…” and I said “let me guess, you don’t have the MRIs?” Yep. No MRIs to look at. Toronto didn’t do the MRI they were supposed to and McMaster wouldn’t send his one over. Didn’t do it?! A can NEVER have another MRI now because of the magnet in his skull. They better have something! I was so FLIPPIN mad!!!!! I drive all the way there alone with A to find out NOTHING! I don’t understand how all of this bullshit happens with A. Why do we have SO many issues with hospitals and doctors!?! I just don’t understand. So out of the 20 minute appointment that we DID have I was told that A has dystonic cerebral palsy. hahaha are you kidding me?! Thanks for the information that I already knew!
So the last appointment we had with the docs in London they told me that they could guarantee that As would have PVL or something happening with the basil ganglia. I had asked “what if nothing shows up…then what?” And I was told then that A would be a mystery. WELL this time they told me that they would try and get the one that A had done for his implant and if I didn’t hear from them in three months to call them. Three months?! They then went on to say that even if the MRI was fine it didn’t change that he had CP. What about the mystery? Well it doesn’t matter they said. The damage could be in the nerves and cells. Hmmmm sounds strange to me. I am not giving up on my fight and one day I WILL succeed!
After leaving London VERY upset I drove to C-town. Grandma and grandpa were taking A for the weekend so that I could go on my much needed girls weekend near Grand Bend. Tina came to pick me up and we headed out about 8pm.
I had an AWESOME time. It was so great to know that A was being taken care of and that I had NOTHING to worry about for once. It was so strange just doing nothing and hanging out. Sleeping was strange too! It was SO quiet and dark and that is NOT something that I am used to here at home. We all went and spent the day at the beach on Saturday and had great weather. There was eight of us girls and I can’t wait to do it again next year! I wish I had taken more pictures but here is what I have….
Sunday A and I left C-town at 2:30pm and I was home at 4:30pm. I could hardly believe that it only took two hours but we usually stop so it was very quick just doing it straight!
A didn’t sleep the whole ride home and wasn’t very happy either. I had to stop twice because he was vomiting so much that he was choking. NOT a fun ride to do alone that is for sure!
Finally after getting him in the door and changed he went to sleep. That was at about 5pm. He slept until 8:30pm!
After his bath and brushing his teeth he pretty much wanted to go back to bed. Daddy spent a bit of time out on the balcony with him watching the stars and that was it…he was just exhausted. And this morning at 8am….
Well it was a crazy couple of days down in Toronto at Sick Kids. A, daddy and I went down on Wednesday night to save us the drive Thursday morning as A had to be at the hospital for 7am. We got down there about 8:30pm and went and checked in our room and then headed out to get a bite to eat. WOW, I cannot believe how many sketchy people are around down there!
After having dinner at the Golden Griddle we went back to our room to try and get some sleep before having to be up at 5:30am. A didn’t go to sleep until about midnight and I didn’t sleep very well anyways. Strange to be right beside him sleeping!
Thursday morning we headed out at 6am to walk over to Sick Kids. We weren’t sure how far it was exactly, but it only ended up being about ten minutes which was nice. I was very frustrated from the beginning of our stay with Sick Kids. We had taken him down to MRI and then they decided that they needed to do an x-ray to make sure that there was no suture inside his stomach from his tube. I told them that there wasn’t one and they had to be 100% sure just in case as metal cannot go into MRI. This was something that should have been checked before the day of the MRI. Anyhow it all worked out well and he was then hooked up and put to sleep. We were then asked to leave the room so that they could get the IV in and just in case they had to put a tube in.
J and I headed back to the hotel to check out and then grabbed some breakfast before heading back to the hospital. At 11am we were called in and went back to see him in recovery. He looked pretty good considering he had just woken up from an anesthetic. (I was pretty emotional waiting for him to come out of the MRI thinking that the next time we will be there will be for the surgery. I can’t even describe how I feel about it but I know that the day we are there for that there are going to be a lot of tears!)
They had him on six litres of oxygen but it came down to about a litre within an hour. He was then moved up to the constant care room on the fifth floor. The nurses and ENT resident were very concerned about how A drops his oxygen sats and how low he goes. It is starting to really bother me as I know that it isn’t normal and something should be done to figure it out. On the “okay” side of this, the ENT resident did say that because A has always been like this with his sats that they look at him as “chronic” and therefore that is probably why no one is very concerned about looking into it.
Grandma and grandpa came down for a bit to see how things went and to visit with A. J and I went back to the car parked at the hotel to grab A’s bag and stroller.
I decided that because A was in the constant care room that I would go home for the night to get a good sleep. Just before we left A decided to pull out his IV and there was blood EVERYWHERE! I got him cleaned up and then we headed out. My gut was telling me not to go home but I did. When I got home I was pretty upset and felt like such a bad mom.
Yesterday morning, grandpa came to pick me up to head back to Sick Kids to pick A up. We got there at 9:30am and I thought that he would be discharged soon after getting there. However that was a whole other story once we got there. The nurse came over and told us that his feeds were stopped during the night because “it was pouring out of his stoma site”. I said I didn’t believe that as he has had the tube for so long and never once have I seen that happen. She said that the night nurse told her that the bed was soaked from it so they had ordered a GI study to see what was happening. They were just about to start an IV and I said no, that I was starting his feeds up. The doctor came over and said that we could do that and see what happened once it was running. This was 10:30am.
At about 12pm there was no leaking and told my dad that we could leave. On the other hand I was worried now that IF there was a leak we would get home and then have to go to Mac to get it looked after. So I figured since the study was already ordered we might as well wait for it.
At 2:30pm they called us down to radiology. We sat there until 4pm!! Anyhow we went in and the doctor put some dye into his tube and said that it was fine. Then he looked a bit closer and said that there was a tiny leak in the middle of the tube that was in his stomach. He showed me but I told him that I wasn’t worried about it because this was the first tube that A has had that has NOT caused a lot of vomiting issues. Before I could say anything he took the scissors and cut the tube right off! He said he was going to just put a new one in. I was NOT happy! A was very upset as the doctor was not being gentle at all. He was satting in the 40s and they weren’t even worried about giving him a break to settle down. He was screaming at the top of his lungs and I was trying hard not to cry myself. It is VERY hard to watch things like this happen.
When we got out of there and back to the nurse that had come downstairs with us I started crying when she asked how it went. I told her I should have just gone home and not bothered waiting for the study. The other nurse told me that she would get the doctor for me to talk to but I said no, that I just wanted to leave.
We got back upstairs and I calmed down. A was tired and went back to sleep. He was satting between 88-90 which was bothering me. I placed the oxygen in front of his fact and he would go up to 98. Take it away and he would go back down. I think that he needs to go back on oxygen because it is obvious that it is helping him. When he was sleeping earlier in the day ON oxygen he didn’t go below 97. So I will calling a few doctors next week to see what they think we should do.
Anyhow, we didn’t end up getting out of Sick Kids until 6:30pm. We are VERY happy to be home for sure!
So now we just wait to hear from the cochlear implant team about whether or not A is a candidate and hopefully get the date for the surgery!!!! I am sooooo excited that my little man will be hearing my voice!
My little man this morning when I went to get him was at the bottom of his bed…
Well I thought I would do a post before we head out for Toronto! A is getting his MRI and CT scans done tomorrow. The MRI is for the cochlear implant (the last step before we find out whether or not he is a candidate!) The CT scan is for his doctors in London. We arranged for them to be done together so that he wouldn’t have to be put under twice.
Today A’s early interventionist was here. It has been a LONG time since we have seen her as she was off sick. She is absolutely amazing with him and you really know that her heart is in her job! She comes to play with him and help him with different toys and such. Well today she helped him draw a picture!!! I once again had a moment where I could feel the tears well up in my eyes. Amazing how such small things mean so much!
Grandma was here too today and A had some fun with her today!
Anyhow, I am off and can feel the butterflies in my stomach already about tomorrow!
So it has been a few days since I have posted, but I am happy to say that A if fine now and back to his old smiley self! Actually maybe even a bit happier than his old self!
Thursday went okay, he was still a bit fussy off and on but it was definitely better than Wednesday or the rest of the week. He actually slept all night on Thursday which was a bonus because it is VERY unusual for him to do this. Of course his sleep was interrupted early as I had to wake him up at 6am to get him ready to head to Toronto Sick Kids for 9:15am. Grandma and grandpa were here to pick us up at 7am and it took two hours to get there! I cannot stand the early appointments because we get stuck in the traffic all of the time and it is just insane!
So the appointment was for his pre-op for his MRI and CT scan. He will be put under a general for this and they decided that they want him to stay overnight after he gets it done. I am a bit frustrated with this because he has had a general before and just had to wait a couple of hours before leaving. I think with his history and cyanotic episodes that he has on a daily basis they are just being safe.
When they hooked him up to the sat monitor, he was only at 87. The nurse waited and waited and he pretty much stayed around there. She said that he can’t do that all the time and I said yes he does. She asked if the docs are investigating it and I said no with a little laugh. After a bit he came up to 95 so she used that number for the form. I would say that his average sat is 92.
Anyhow, he was in a great mood the whole entire day at sick kids! When we left he fell asleep in the truck and we drove around a bit so my parents could reminisce about the past since they grew up in Toronto. We drove by my grandparents old house, wow that was strange! Haven’t been there in almost twenty years. We then went for lunch at Swiss Chalet before heading home.
Last night after daddy got home we went and bought bikes! Now we just need to find a bike trailer for A. I actually found a place that builds them and they are right here in Guelph. I think I will take A in one day this week and see how I like them. The one at Sport Check he sat in fine, but this other place builds them for special needs. And I think once he gets bigger he will need the extra support for his head/neck/trunk.
Today was a good day as well with A…..I need to get to bed though as my eyes are trying not to close! Oh, and I don’t know who left the comment the other day about A’s soother being in upside down but that is the way that he likes it. I know how it really goes but he cannot hold it in by himself that way. I think with his bottom lip over the top edge it helps him. Oh well, your comment gave me a laugh! 🙂
A and mommy the other day playing around with the camera!