Well it has been a very tough couple of days for me. A was taken off of the vent on Sunday and did okay until about 5pm. He then started with his morphine withdrawals AND blue spells. I was just beside myself.
Anyhow, the one stitch has come out of the right side of the trach. This is of course the side that is a bit wider open than the other. We had to change his trach tie Monday night and he did NOT like it. He was crying his eyes out and was very very off colour. I don’t even want to see this kid when we have to do trach changes!
There is a chart at his bedside where the nurses are to record all blue spells/desats so the doctors can try and figure out WHY he is still having them with the trach.
Monday I probably cried for three hours straight. I just am SO tired and just want things to be fixed and go home. There have been alot of tears shed this week!
On a positive note, he is sleeping BEAUTIFUL. I don’t want to jinx things, but so far so good in that area. The only exception was last night which he was up from about 12am until 6am. I was finally able to see his sleep study that he had done almost two years ago while we spent 88 days in Sick Kids. He had a total of 58 obstructive episodes which came down to one every five or six minutes. Those are obviously gone now with the trach.
Why on Earth I was told by his team at Sick Kids that his sleep study was not that bad is beyond me. His RT here said that his sleep study was “scary.” To me this is something that should have been dealt with almost two years ago.
He is breathing better in the day and does not have the nasal flaring that he has always had and the hard work of breathing.
We had a team meeting Tuesday and the issue now is his feeds. He is aspirating (we got formula out of his trach Monday-not 100% sure but pretty sure it was) and we are trying to figure out what to do. I was told by the docs that I am NOT allowed to have any say in feeds right now and they are trying to work them out. This is VERY hard for me as I am a 24/7 hands on mom. So they want to feed him straight peptamen 1.5 at a rate of 20mls/hour from 8am-10pm. Today he is up to 40mls/hour for the same amount of time. This makes me ANGRY. He has to sit in his chair this whole time. I know it is only temporary, but I am stressed out after watching him in his chair for ten minutes with the trach.
The doctors said that I am probably emotionally, mentally and physically exhausted and therefore they are taking some “burden” off of me. However I did say that I am the one sitting there all day with him, not the dietician. I am the one watching him reflux. I am the one dealing with him being upset because he is NOT comfortable in his chair.
Yesterday and today from about 12pm until 2pm he is just CONSTANTLY turning blue and just not happy. I really don’t know what to think of it but I just hope that this stops.
Just another day…..I really need to start seeing a light because I am already stressed to the max! Here is a picture I took last night myself of my little man and I.
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!
Wow it has been a long time since I have blogged!!! A is back to himself and has been for about a week now. He came off the oxygen last weekend and by Monday of last week he was smiling and his happy self. Not too sure what the issue was with him, but I am not complaining!
So things have been interesting with him yet again. We went to Sick Kids last week to see his complex care team and his chest team. More or less just a follow up of his stay that he had there in March. Anyhow, as you probably all remember, he tested positive for pseudomonas while he was intubated. Once we were out of ICU and onto the floor the chest team had come and told me that they did not believe that he really had pseudomonas. They believed that it was a contaminate of some sort. So they wanted to do a swab of his throat to see and the main doctor said “I can guarantee you that it will be negative.” He was VERY sure of himself. I had to trust him as he has been doing this for many, many years.
Well we found out that A’s swab was POSITIVE. His complex team and the chest team have NEVER seen a positive pseudomonas swab of the throat. It is just mind boggling to me how A ALWAYS and I mean ALWAYS is different. So while we were there they did another swab.
I just got word yesterday that this swab was also positive. YES, I can’t believe it. I don’t understand it. And I hate how we NEVER EVER seem to have ANY answers for everything that happens in A’s life and my own for that matter. The chest team called today and they are going to start him on tobramycin. I was so upset on the phone I was in tears. When they first found the pseumdomonas in the ICU, they had started him on two different antibiotics to treat it. But after only two days they took him off those and decided NOT to treat as they believed it was not a real positive. WHY couldn’t they have just finished the course of antibiotics?!? UGH it makes me so angry.
Anyhow, besides that there is not much new with A. We are patiently waiting for his metabolics/genetics appointment which is next Monday. We have been waiting for this day since last March!!! I have started a list of things I want to talk to them about so that I do not forget anything. The complex care team also told me to make sure that I mention our recent loss of H as maybe they will wonder what is happening too.
Speaking of H, I just got my tattoo on Saturday for him. I absolutely LOVE it and I am so happy that I did it. It is hard for me at times because it is like I can NEVER not think of him as I see my arm all of the time. I am getting used to it though and love the fact that I can see him whenever I want. It is just beautiful.
I can’t believe that it has already been almost five weeks since we lost him. Time just goes so fast and it really makes me stop and think about how I have to slow down and enjoy things in life because there is no turning back.
I went on Monday to see high risk to discuss my loss of H. We are starting with some smaller ideas to see if anything shows up and then we will discuss the results. I had bloodwork taken to check my thyroid as well, she is wanting to test me for diabetes. There are some swabs she wants to do as well but we are going to wait for a few weeks for when I go in for another procedure. They are going to insert water into my uterus to see if there is anything wrong with the structure of it. Any of things would be okay because they are FIXABLE. But over 50% of women never have answers that are that easy so I am not getting too hopeful about it. Wouldn’t it be nice though if just once things went in my favor?!
On another note, this little girl needs all the prayers she can get. Every time I read her blog I am in tears. She had went into hospital for a g tube placement and a fundoplication and is now brain dead. Just so horrible that I don’t even know what to say.
Well my little man is sick again. It started last weekend with him not sleeping very well and having a lot of desats. Sunday night we started him on oxygen which seemed to help so I figured he was just needing some extra support. It wasn’t really until Wednesday that he started with the coughing, going off colour a lot more and just not being himself. When he got up that morning he was not looking well at all. Daddy cuddled with him on the couch and when I happened to come in the room after about fifteen minutes and look over at A he just looked BAD. I went upstairs to get his monitor and he had very low sats that would not come above 60. I got the nasal prongs out and put him on oxygen and that really helped him. I called his doctor here in town but they could not see him until yesterday.
Grandma and I took him in for 1pm and A did not want to be there. He was also tired as I had just woke him up before we left. He was going off colour and the doctor did not like what he was seeing. I have to add that this doctor has seen A go off colour MANY times and never ONCE has he been concerned like he was yesterday. I really think that he received a letter from Sick Kids about how we were treated the last time that we were in Guelph emergency.
Anyways, he told me that he wanted me to take A to Toronto or to Hamilton emerg and have him seen there. I started crying of course because I absolutely HATE hospitals and it just was the last thing that I wanted to deal with. It breaks my heart every time that we go there and they have to poke and poke him for IVs. He suffers SO much and there are times where I really just can’t do it to him.
Anyways, we ended up leaving the doctors with a note that I was to give to the emerg doctor telling him about what he saw while we were there. I was very upset because it is always the same old thing when we go. People rush around like mad when they see A’s oxygen sats but as soon as they hear that he has a history of them it is like they don’t give a crap. Very frustrating as a mom but I cannot lie to them as all of these hospitals have record of A.
We came home and I called his team at Toronto Sick Kids. The NP that I deal with did not feel that A was at the point of needing admitting. We had put on his Wonder Pets for him and he was only on half a litre satting 100. He was smiling and just not seeming sick enough for me to want to deal with emerg doctors on a long weekend. After speaking to her I decided that I was just going to keep him home.
We had a nurse on last night and she said that A had a pretty good night. He was restless between 3-6am but other than that he was satting well and sleeping well.
I have had to do some suctioning and for once in my life I am actually getting things up and out of there! Makes it much easier for me to do it knowing that I am helping him.
Today he woke up not so happy and I thought we would be heading into emerg today but once I got him dressed and settled he was fine. We went for a nice long walk and he went down for a nap at 3pm and is still sleeping soundly now at 5:30pm. I have the compressor on with a mask near his face and he has not dipped below 90 once.
I just hope and pray that things get better for him before they get worse. I don’t know why on Earth he keeps getting sick so much this year. It is the crappiest year of my life EVER! He has only been home now for just over three weeks from his last ordeal and I really don’t know if I can handle being in there again so soon. I keep wondering when we are going to catch a break around here and have good things happen?
In other A news, we started speech therapy on Tuesday. He will go every Tuesday for eight weeks to start off. It was interesting but I really do wonder how speech therapy works with a child that is non verbal and very stubborn?! We’ll just have to see how it goes.
These were taken March 25th…I had been feeding him and his extension came undone so the food went everywhere!
Look at what he did with physio last week!!!!! First time EVER!!!!!!!!!
Is he not just amazing?!?!?!?!?!
I have been getting a lot of emails from people all over the Internet asking how I am doing since losing H. It was two weeks ago tonight that I went into labor with him. I can hardly believe that fourteen days have gone by. There are times when I am so heartbroken and just cry and cry. And then there are other times that I just feel like everything wasn’t even real. I just wish I knew WHY it happened.
I have been doing pretty well though I think this past week. I have started a blog for Hunter, more of a diary for me to write my thoughts and feelings. I have always been a big person for writing a journal and I think this has really helped me already in dealing with my grief. It helps to get it out. It is a private blog that only I can get into right now but in time I may open it up to some of you that would really like to read it. Let me know if you are interested.
I have also contacted my social worker that I have dealt with on and off since A came home from the NICU. She will be coming next week to talk. She is a wonderful lady and it really helps me to talk to her. I have not seen her since before our wedding so there are a lot of things to talk about.
I also wanted to say thanks to those moms in my Internet world that have been there for me and talked very openly with me about losing their babies. It always helps to talk to others that have been through it. Makes you understand that you are not the only one. That you are not to blame. You guys know who you are!!!! Huge hugs to all of you!!!
Another thing. People seem to be so afraid of asking me how I am when they see me. Afraid of saying anything really. Do NOT be afraid. I want to talk about H. I want to remember him. When people “ignore” asking me anything I feel like he didn’t matter. I know that is not what people intend at all but it hurts me more to hear nothing than to hear something else.
I don’t want to hear that God wanted it this way. I don’t want to hear that it wasn’t meant to be. I don’t want to hear that God doesn’t give me more than I can handle. I don’t want to hear that he is in a better place. I don’t want to hear that I am young and still have lots of time to have babies. I don’t want to hear that I can always adopt. I don’t want to hear that we are supposed to have an angel. These are all things I have heard yes. And honestly it drives me mad.
Actually, this makes me think of a poem I read on the Internet. Here it is:
Don’t Tell Me
Please don’t tell me you know how I feel, unless you have lost your child too,
Please don’t tell me my broken heart will heal, because that is just not true,
Please don’t tell me my son is in a better place, though it is true, I want him here with me,
Please don’t tell me someday I’ll see his face, beyond today I cannot see,
Please don’t tell me it is time to move on, because I will never be there same,
Please don’t tell me to face the fact he is gone, because denial is something I cannot stop,
Please don’t tell me to be thankful for the time I even had, because I wanted more,
Please don’t tell me when I am my old self you will be glad, I’ll never be as I was before,
What you can tell me is you will be here for me, that you will listen when I talk of my child,
You can share with me my thoughts, you can even cry with me for a while,
And please don’t hesitate to say his name, because it is something I long to hear everyday,
Friend please realize that I will never be the same, but if you stand by me, you may like the new person I become someday.
Just a quick update as I am on my way out. Yesterday grandma and I took A to emergency here in town. Long story short, he was in respiratory failure and was taken by helicopter to our childrens hospital in Toronto. They had to intubated him before leaving.
When we got there last night he was needing a lot of meds to keep him calm/sedated. Heartrate was 220 which is what they were concerned about at that point.
I will update as I can!!
Sixteen years ago today I lost someone who I loved very much. My grandma C. I really can’t believe that it has been that long. WOW, how time flies. There is hardly a day that goes by where I don’t think about her and how much I miss her. How much I wish she was around me. How much I wish that she could be a great grandma to A. How much I wish I could see her hug him, talk to him, just love him. How much I just wish she was still here, period.
I have yet to understand why we seem to lose the great ones that we love too soon. It just really doesn’t seem fair. And it just totally plain sucks because she was so loving, so caring and such a wonderful grandma. I have SO many great memories about her which I am thankful for.
I really truly believe that even though I cannot see her she is here with us. A definitely has his “friends” that make him smile and giggle and I am sure that she is one of them.
I love you grandma.
It was three years ago today that A came home from McMaster after his ICU stay.
It was two years ago today that he came home from hospital after being admitted for high fever, congestion, vomiting and all that fun stuff.
It was a year ago today that he was still inpatient at Sick Kids dealing with an NPT tube.
And today, well he is recovering from pneumonia!
Hmmmm something about him and the number 23. January 23rds and February 23rds. This explains why 23 is one of my lottery numbers. Not that it has been lucky, but I figure it is significant so I might as well!
Well not much happening here in the S household. I have a million things on my mind and what I need/want to get done here before summer! We really need to finish painting and we would also like to finish our basement. I got the ball rolling today and had my friends husband come and take some measurements and look at what exactly I want done down there. So hopefully within a short time we will have a ton more room and a place for all of A’s toys!
I have still been feeling pretty crappy most days but I really have to say that it makes me feel a bit more confident with the pregnancy because I never had this with A. As well I have been told that it means that overall the baby is doing better. This is a great thing and I expect this baby to stay in my belly until at least August…due date being the 25th! I have found this week as well that I just really have no energy at times and could stay in bed all day if I was able but of course that just can’t happen! The only really concerning thing to me is that I have been having chest pains for a couple of weeks now. Very off and on but sometimes it comes on so strong that I have to stop what I am doing. Yesterday it was pretty much an all day thing which had me kinda freaked out but today has been a bit better. It is something I will definitely have to bring up with the high risk team when I see them a week tomorrow!
Of course I think the other issue is that I know too much. I can’t be oblivious to things that happen in pregnancy as most mothers can. I know all too well the horrible things that can go wrong and it scares me half to death. I am trying to stay positive though with this one and have warned “her” (haha) that I expect her to wait until the right time to make an appearance and to not be like her brother.
J and I find ourselves talking a lot about the “what ifs” and how we both feel. I think this has helped us cope a bit better with the whole idea of another baby. The preemie thing is definitely not something that we ever ever want to experience again so I just hope that things go smoothly!
I find myself wondering a lot how A will be with the baby and how the baby will be with A. It is the one thing that I am really looking forward to. I just hope that this baby is a great brother or sister to A! I think it is going to be very good for him to have someone else to grow up with and to play with. ALL of the moms I have met that have children after their special needs child have told me that it was the best thing that they ever did for them. So we will just have to wait and see!!!!
A has been good as well. I can’t believe that so many people seem to be getting sick lately but he has been overall pretty healthy! *knock on wood* He had some funky rashes happening late last week but I have no idea what they were and out of nowhere they just stopped happening.
His auditory therapist has been starting with switch toys (he does use them with EI already) and she asked if she could try it using his head to control. I said sure but didn’t really think he would catch on but sure enough he was pushing his cheek over to make the toy go. What a smart little man eh?!
On Thursday, A’s cochlear implant decided that it wasn’t going to work anymore and I tried everything but still wasn’t working. I then called United Hearing (where I order all of his pieces from) and the first thing the lady said to me was “are you sure that you are trying to turn it on with the right button?” Ummmm HELLO he has had the thing for a year and a half, there is only three buttons on it, I can do it with my eyes closed…yes I am using the right button! So she tells me that if I have replaced all of the other pieces that it is most likely the actual processor which is the only part of the implant that I don’t have a spare of (you cannot have spares of these). So she tells me to call Cochlear USA and talk to them. So I call there Thursday afternoon. Talk to the lady and tell her what is happening. She tells me that she will have to call his audiologist at Toronto Sick Kids to get his mapping program from them to put in on a new processor and then send it out. So I asked how long this will take. She says she will call Sick Kids on MONDAY and then it takes usually two days to get in the mail. Hmmmm so he has to go almost a week without hearing?! Call Sick Kids on Friday!!!!!!!!!!!!!! I was upset and angry. I called Sick Kids on Friday and had them send them his mapping program to them right away. UGH people just don’t get it. Poor guy probably wonders what is going on.
And tonight I get a night out! Andrea (soon to be bride of my brother) and all of the girls from the wedding party are going to see Bride Wars. WOO HOO should be good!
Well January 23rd is sure a day that will always be in my thoughts. January 23rd 2005 was the day that I found out that I was pregnant with A.
January 23rd 2006 was the day that A finally came home after 227 days in the NICU. Although it was only a short visit home it was still a day that we never ever thought would ever happen!
January 23rd 2007 was the day that we found out that A was legally blind. We had always known that he would have issues with his vision but never in a million years did we think that we would have to deal with the whole “legally blind” thing.
January 23rd 2008 A was in Toronto Sick Kids undergoing many tests to try and get to the bottom of his blue spells. It was the day that we found out that his lungs were 40% lipids and that I had no choice but to go with the fundoplication.
Thankfully January 2009 has nothing that will always be tied with it!!!! haha Well maybe…the day that we FINALLY got in the New Bug Seat that I have been asking for to trial for almost a year!!!!!!!!!!!!!!!
Well it was one year ago today that grandma, A and I headed to Toronto Sick Kids for his sleep study and ended up admitted. I can’t believe how fast time goes and that it has already been a full year! It feels like yesterday that we were there.
In great news, A’s dietitian was here yesterday and he has gained TWO pounds in just under a month!!!!!!! He has not gained ANY weight in 13months so this is awesome. Nothing has changed except for the type of formula that he is on (we recently switched to Peptamen Jr) hoping that it would help with his emptying and possibly help him with sleeping. Peptamen is much more broken down than the Nutren Jr he has been on. So we are thinking that his body his metabolizing this new stuff MUCH better and letting him gain weight. We will have another weigh in, in three weeks time to see what it is like then.
A’s sleep has been improved this week which I shouldn’t mention because I always seem to jinx myself, but I am hoping that this will continue. I’ll tell you, ever since November it has been a nightmare and can’t be healthy for him nor for I!
This week we have also noticed a LOT more gagging with him. I am not too sure what this is from, but yesterday it was pretty constant and frustrating. Last night at 6:30pm he also had one of his new big spells that he has not had since my birthday on December 12th. They are so scary and I just wish that someone would figure out what on earth is going on with him when he does these.
As for some better news, A continues with his constant babbling. It is SO cute and daddy and I just laugh all the time at him because it is like he really thinks that he is talking. There are definitely new sounds that we are hearing and this is so exciting. Last night it sounded like he was saying “I could”. We are also hearing “b”, “d” and “n” sounds. And actually today is his 18month hearing age so we are hoping for more from him down the road. Like mama!
Understanding. It is really starting to show. Last night he was laying on the floor and daddy was on the couch. I would say “where is daddy?” and he would turn to look and smile. Then I would say “where is hockey?” and he would look at the TV. I kept going and he was just turning back and forth constantly!
As well when someone comes into the house he immediately starts babbling on and on and gets very excited. Yesterday he was doing some OT with his therapist (sitting) and grandma walked in. Well he immediately started babbling and smiling. I really think he is starting to recognize WHO people are.
This kid LOVES hockey. It doesn’t even matter what team is playing, if he sees it on the TV then he wants to watch it. If you are changing the channels and you put it on a hockey game and then change it again, he will complain until you put it back. It is very cute. Well most of the time! haha Gets a bit frustrating when you want to watch a show but he does NOT want to. Seems that he is getting his way VERY much lately! Who wouldn’t give this adorable guy his own way though????
In my last bit of exciting news!!!
Yes, we are pregnant again! This came as a HUGE shock to both of us but we are thrilled now that things have settled in. As you all know, I had a miscarriage on November 18th at about 5.5weeks. Well around Christmas I started to wonder why I had not gotten a period yet. Thought nothing much of it though but it was in the back of my mind. Pregnancy by the way was the LAST thing I was thinking! haha Aunt K had even asked me on Boxing Day if I could be pregnant and I said “no way!” Well December 30th I did a pregnancy test just for the heck of it and sure enough it was positive. Had NO IDEA how far along or anything. Especially since we had decided we were going to wait until after my brother and his fiance get married in May.
So I go to my doctor yesterday. He tells me that it is probably very unlikely that I am pregnant and that the positive result could be meaning that I had some tissue left over from the miscarriage. He said that you usually do not get pregnant IMMEDIATELY after a miscarriage. Well I told him that if I wasn’t then something was wrong because I have been very nauseous this week. So he sends me downstairs for blood work to check my HCG levels and tells me he will call me Monday.
Well I get a call this morning from him. My levels are 56,000!!! He said that puts me about six weeks. So I go for an ultrasound today at 2pm. Well I am 7 weeks and 3 days! We got to see the little peanut and its heart rate was 148. Very cool! So my due date is August 25th….lets pray that this baby waits until August!!!!
Oh where to begin!!! Well let me think back to my last post. Things have been pretty good around the S house this month (minus the nights! LOL).
December 8th I went to see my high risk doctor for my pre-pregnancy appointment. I absolutely LOVE this lady (she delivered A) and I felt very comfortable meeting with her and talking. I of course had to take A with me and well you can imagine how much fun that was. This kid does not like to sit still in his wheelchair and let us all know how upset he was about it!
Anyhow, things went well and she agreed that she would take me on for sure once I have a “viable” pregnancy after eight weeks. The plan will be to see her at least every two weeks for cervix ultrasounds to make sure that all is good there. We do not know why I had A early so she said that putting a stitch in the cervix would not be her first choice for me as that can cause issues on its own. IF for any reason my cervix started to thin out or open early then this would be something that we would definitely have to consider.
As well she would like to start progesterone suppositories around week 16. New studies are showing that it can help prevent pre term labor so this could be a great thing. Sounds like we will be getting to see the little baby a lot with all of the ultrasounds that I will have to get!
I told her about my miscarriage that I had a few weeks before seeing her but she was not concerned about it at all. Kind of put my mind at ease because I was a bit panicked about having one. However she said that it is VERY common and they would only become concerned if I was to continue getting pregnant and having miscarriages.
We also discussed the bloodwork/tests that is done in week sixteen for downs, spina bifida etc. I have been very adamant that I do not want these tests done. They are not 100% and there is no way that I would EVER have an amnio done so doing the initial testing is pointless. I don’t think I know ONE preemie mom that would have an amnio done. Besides, if I am meant to have a child with anything they are testing for then that is what will happen.
There was a bit of drama going on here in my Internet world as well this month. I have (should say WAS) a part of a group of moms that talk on a forum. I was in this group for three years, was a very active member and even donated money to support this group. I met MANY wonderful moms there that I felt like I “knew” and talked about some of them to my family and friends. Anyone in a group like this knows the closeness that you can feel.
Anyhow, I went to sign in one morning and it said that I was banned! I was a bit confused thinking to myself “how and why??” so I emailed the lady who developed the board to ask. The only explanation that I received was that “after some investigation, my story of A does not add up and what I say he does is not physiologically possible.” So I emailed her back saying that everything I say A does is VERY really and that obviously she has a lot to learn about medicine if she is saying that this is not possible. I wanted a better explanation. But to no avail. That is all I got.
Needless to say I was very angry, hurt and upset that this was happening. I think more so because of the friendships that I had formed there.
Well a couple of days later I get told to go and look at the forum. Now normally when someone is banned it is kept private. If anyone was to ask about me they would be sent a message PRIVATELY about what happened. Well this lady took it upon herself to post a not so nice message to the entire group about me. Basically it said that after some investigation they had to ban me as what I say is not real. That some moms make their children sick. That sometimes moms find information about others and use it as their own. I literally felt my heart go to my feet and thought that I was going to vomit.
The worst was yet to come. MANY MANY (think over a hundred) people replied to this post saying things like “oh my god I had no idea”, “I hope she gets the mental help she needs”, “I hope and pray A is safe”, “doesn’t surprise me” ….you get the picture. These were women that I have talked to and shared things with. Women who I thought were “friends”. It was so very sad that all of these women were believing ONE person. ONE person who never even followed Ashton’s story. ONE person who runs everything and can get rid of you just like that.
Over time though I have come to realize that I don’t care what they think. I know that I am a great mom, I know that what A deals with is very real. I know that my “real” friends support me. And I also know that ANYONE who believes this “lady” has no idea either.
Next came our visit to Sick Kids. We had a meeting with A’s team because of all of the issues he has been having since the beginning of November. From his being up at night way too many times, to his screaming fits, to his slow motility, to my thoughts of him having reflux again, to his new episodes where he is not breathing. I have to say that this meeting actually went better than any other one that we have had. I think that his main doctor has changed his tune and realizes that I am not going to stop bugging or go away!
Grandma and grandpa C came with us to the appointment. Upon entering the office A went into one of his new spells. However by the time I found the nurse and she came in A was breathing once again.
We discussed many things. I told them that I wanted an upper GI done to check his fundo. We also discussed possibly placing his on cisipride for his motility, but of course it is banned in Canada so there is a process that we have to go through to get this medication. The first step being an ecg of his heart.
The suggestion came up as well to try him on a different formula and see if that was to help at all. Since the appointment I have done so but do not notice any change in his sleep or his motility.
I was also told to up his prevacid to 90mg/day from the 60mg/day that he is on. However I was very adamant that I am not doing this because I don’t believe that I need to have him on such a high dose.
I also told them that I had not yet heard from the sleep lab for another sleep study or from cardiology for an echo. I also asked if they could arrange another 24 EEG seeing that our last one was done in October 2006. These are being arranged.
December also brought my 30th birthday. I have to say that it has been the ONLY birthday that kinda brought me down a little bit. I had a wonderful surprise from my brother and his fiance. Since my birthday was on a Friday it worked out perfectly and they had taken J and I to Toronto to see Dirty Dancing! It was really good and I have always loved that movie. What girl doesn’t? I have to tell you though that the guy that played Swayze was FAR from good looking which was kind of a bummer when he is the MAIN interest of the movie! hahaha
Grandma and grandpa S came down on the Saturday (13th). We had a really great visit and we went out for dinner for our birthdays. Daddy was unsure about going out for dinner because A usually does not like to sit still but he was SO well behaved!!! And as a bonus we got to keep the dinner that grandma had brought down for the next night! haha
Daddy also turned 31 in December. A and I had baked him a cake and we celebrated his turning another year older with just the three of us.
December 23rd grandma and grandpa C were here early in the morning to pick A and I up to head to Sick Kids for Ashton’s ECG and upper GI. We left here about 6:30am for the 9am appointment and ended up getting there about an hour early. Worked out well though as we were able to have a coffee and sit a bit. It is always nice to get there and not feel so rushed. A had some bloodwork done first and did really well. I can never get over how well the people that work in the clinic there do with the kids.
9am we were upstairs for his ECG. He was a little worked up at first but I think that is normal seeing that normally he is being poked and prodded and probably is worrying about that. After the ECG we headed to radiology to have his upper GI. Upon entering the room A started to get very upset. This is the same room that he had ph probes placed and I know that he remembers that. As soon as I laid him on the table he was so upset crying and going off colour. The doctor placed 60mls of fluid into his g tube and we waited. We could see his tummy full and I was just waiting for the reflux to show. We would go from his back to his side for about five minutes and nothing. The doctor then said that he was going to put in another 60mls. I was a bit hesitant as I only feed A 50mls every twenty minutes during the day for his feeds but he said he wanted to push him a little. So he did so. STILL NO REFLUX!!!! We waited about ten minutes and NOTHING. A was still very upset but mommy was SO happy! I was just about jumping up and down and the doctor said “these tests are only a moment in time and you have to remember that.” Yes, I know but trust me, I know my kid. He was so worked up, gagging, crying and laying down and NO reflux. If he was going to reflux it would have been THEN. See, it pays off to do research and demand a certain surgeon do the fundoplication, because he obviously did it PERFECT!!!!
A however was not emptying AT ALL while we were in the test so the doctor asked up to come back in an hour to have a picture down to see how things were moving. I’ll tell you, I was a bit nervous with it being the 23rd thinking that possibly he would be admitted for obstruction!
We all went to eat lunch and walk around while waiting for the hour to pass. Upon having the x-ray done all was good and we could head home.
Christmas Eve A was in bed at 11pm and daddy and I shortly followed. Daddy is still a big kid at Christmas time and was up about five times throughout the night until 7am when he finally got out of bed! haha I was up soon after and A was up at 8am.
It was pretty cool this Christmas because A was SO into the presents and had lots of fun. Last year I taped the entire morning here and he kinda just sat there. Well this year all he did was talk and talk and talk!!!! He would get so excited for a present no matter who was opening it. Really neat to see. Maybe next year he will understand the whole Santa thing? I can’t wait! He does know what “Christmas Tree” is and even if I say it now he smiles like crazy. Such an amazing little man! Cujo and his new bone Santa brought for him…
We headed over to grandma and grandpa C’s at about 11am. Uncle S, Aunty A and Aunt Shorty were also there. We all got spoiled and had a great time. Aunty A made me this amazing gift this year and I wish I had a picture of it to show you but I don’t. It is the word “Miracle” cut out in wood letters and she put pictures and decorated them. It of course made me cry and I can’t wait to get it up!!!
Boxing day we headed down to Chatham to visit with grandma and grandpa S and Aunt K. Great grandma and grandpa came over to visit as well when we got there. A decided to nap later in the day so poor daddy had to wait to do gifts! haha
Once again we were all spoiled!!! A got the new Elmo which is pretty neat because when I would take him in stores that had it I would always play it. In the store it only says one line so now he KNOWS when that line is coming and starts smiling like crazy.
A in his cool new pajamas from grandma and grandpa S…
Saturday night grandma took over for A so daddy and I could go out to the bar and have a night out. It was lots of fun and A had a pretty good night for grandma which is always great!
We came home Monday evening and I took down our Christmas tree within the hour of being home. I know that old wives tales say it is bad luck to take the tree down before the New Year, however last year I left it up and we didn’t have the greatest of years so I thought I would try this! haha
New Years Eve we didn’t do anything. A was in bed at 11pm and daddy and I watched the New Years special. The minute after the ball dropped I was in bed! I have been SO tired lately and just have no energy at times to do anything.
Here is to 2009 and hopefully a GREAT year!!!!!
Sorry I have not updated since last week. Well Tuesday morning daddy and I got to the hospital at 8am. A was sitting up in his wheelchair watching TV. He looked good but then I noticed he didn’t have an IV!!!! The nurse told me it had come out during the night. UGH I was SOOOO mad!
His ped came in about 8:30am and told me that he refused to poke A for the 18th time. I asked him to look at the xray from in emerg so he did so. Told me he did NOT see pneumonia. WHAT!? My little man got 17 pokes for nothing??? So he took me to show me all of his xrays. I of course cannot tell pneumonia but it was interesting. So I then asked what the radiologist said. He said “possible” pneumonia. Okay so I have one saying yes, definite pneumonia, one saying no and one saying possible. Am I the only one that is confused on how this happens???
Anyways I was a bit frustrated that he put A on oral meds and said we could go home. So he told us to wait the day then and see how he was around 5pm when he would call. Okay fine. Grandma came up and daddy and left for a while.
At 3:30pm I returned and my mom said he had a pretty good day. He was acting tired so we figured we would try him down for a nap since we still had a while to wait for the doctor. Well that is when he started his blue episodes. It was about 20 minutes with sats below 60. The nurse on went and called the doctor. He told her that he was not doing any further investigations. UGH!!!! You could tell something was wrong because everytime that A got upset his heartrate would fly up. The doc told her that if he did it again before 5pm then he couldn’t go home. I was just so frustrated and pissed off that I packed him up and we headed home.
Monday night A is sitting with daddy on the couch. He starts to get upset and goes off colour. Well all of a sudden he cries like something REALLY hurts, goes straight stiff and boom he isn’t breathing. When he finally did take a big breath he passed out. J laid him on the floor about ten minutes later and he didn’t move. ANYONE that knows A knows that for one he doesn’t go to sleep on you like that and two if you move him he wakes up.
Well at 11pm I went to give him his med and he woke up. So we took him up to bed. What does he do?? The same thing!!!!! Except this time when he started breathing he didn’t pass out, he just continued to fuss and cry.
Tuesday morning I was livid to say the least. I immediately emailed his team at Sick Kids about what went on and called his doctor here. I was bawling my eyes out when I called the doctor and told the secretary what went on. She said she would call me back. When she did she said that he wanted to see A the next day to discuss home oxygen. WHAT!?!? That is NOT the answer. And we already have home oxygen!!!!
The nurse practitioner called me from Sick Kids. Said that she talked to his doctor and he wanted to see A in clinic next Tuesday. HUH? I am telling you my child stopped breathing TWICE last night and you want to see him next week??? I told her that wasn’t good enough. That I wanted something done NOW. She said she would go talk to him and call me back. When she did, she said that is the best they could do. She also told me that if things were that bad last night I would have called 911. Really?! For what?! To go through the same drama and have nothing come out of it?? I called 911 when he wasn’t breathing and it was like I was on a soap opera and we were sent home that SAME day with NO answers and NOTHING fixed.
By this point I am really really angry. I decided with the support and advice of a group of moms that I talk to, to take things further. I talk to A LOT of moms that have kids with all kinds of issues and all agreed and cannot believe that nothing is done. One mom even told me that if her son had sats as low as A she would expect a helicopter to land at her house.
I had another mom tell me that she thinks that the doctors don’t do anything because A is disabled and it doesn’t matter. (The low oxygen levels). Sadly I agree. If A was not disabled and he was doing what he was doing the doctors would not let it go on without investigating WHY it was happening.
I sat here Monday night after all this and wondered if I was just a crazy mom who wanted too much from doctors. If I was taking things too far and really they weren’t that serious. But I realized that NO I am not any of these. What A does is NOT okay and I have absolute reason to be worried.
So I took it upon myself to email about four news stations and about eight doctors/hospitals within the United States. I have heard from Global News so we will see where that goes….hopefully somewhere.
I have thought of this for a long time but I was so worried that it might make things here “difficult” or “worse” for A but I realize now that it cannot get any worse for him. No one does anything. These doctors and hospitals are supposed to take care of him. And the care he is receiving is disgusting to say the least and they need to be held accountable for this.
Anyways, that was Wednesday. I heard from Global Friday. A has continued with his blue episodes, however none as bad as Monday night but still not right. I just hope that ONE DAY SOON I find the right person who wants to help my little man. How could you not want to help him???
Sorry that it has been so long but things have been very busy around here (what else is new?!) and I have gone over my limit of pictures on my blog so I had to erase some older ones and will be buying some new space for more!
So whats new? Well A is still being A. I am on my way working back into the blended diet as I do not think that any of the foods were causing his issues. He still continues to have episodes of going off colour in the day and being fussy at night. Not sure what is going on at all. I have been chatting with the team at sick kids and I finally got an answer from them YESTERDAY of what the teams thoughts were on the video I had sent. Well she said that they feel it is the same thing he was doing inpatient only with teeth grinding and that mixed with breath holding makes things like this happen.
Well I emailed them back saying that what he is doing is NOTHING like what he was doing before at all. I also told her that I did not want to hear the saying “breath holding EVER again”. What A is doing is NOT breath holding and never has been. The doctors know my feelings on this. She also said they wanted to do botox again in his saliva glands. I am not for that at all either because it did not do anything the first go around. So anyways that is that….
I cannot wait to get this kid a new bed!!! I am getting so frustrated with how he moves so much at night and gets his legs and arms caught in the crib. Half of the reason I think he wakes up at night is because of this so in a month this little man is going to have a big boy bed!!
And now for some tear jerking exciting news! The other day his EI worker was here to play/work with him. At the end of every session she colours a picture with him. She gets the paper ready and then will hold up two markers and make him choose what one he wants. Then she will put it in his hand and hold his wrist while he moves it around. Normally he isn’t even paying attention to the colouring at all and is trying to pull the marker back to put it in his mouth. Well this time he coloured ALL BY HIMSELF! She wasn’t even holding his hand AT ALL! I grabbed my camera and snapped some pictures and then I grabbed the video camera and taped him. He is SO amazing!
Well a year ago today was when A heard for the first time!!!! I cannot believe that a year has gone by already because it feels like yesterday that we were all really excited about getting him “turned on”. The cochlear implant is the best thing that has been done for him yet. I am so amazed at how well he has done and how he hears EVERYTHING!!!! I am still getting him to work on saying mama but it hasn’t happened yet! LOL
Some more exciting news about A. He got his first haircut two days ago!!! Mommy finally gave in and cut it off. Daddy and I did it together and I have to say that I am VERY happy with the results!!! He looks so much older and more like a little man.
That is about all of the exciting news around here. A continues with his episodes at night and continues with turning blue during the day. I happy to say that FINALLY the team at Sick Kids replied to my email that I sent two weeks ago Friday. They are concerned and want to see him in clinic. I emailed them back asking what their thoughts were and what the plan was because I wasn’t going to waste my time going to Toronto so that we could sit there and look at each other. As well I told her that I wanted the date for his next sleep study, ENT followup and genetics.
Now, just needing all you guys to pray again. Auntie A (my brothers fiance) is in ICU right now and is very sick. She was diagnosed about 8-10 weeks ago with cardiomyopathy with a heart function of 20. Well she is now at 17 and is having a tough time. I’ll tell you though, her spirit is AMAZING!!!! She is only 25 years old and needs all the prayers she can get right now. Thanks everyone.
Well I have said it. I was wrong for once! LOL We went to Toronto Sick Kids on A’s birthday for an eye check. He had not seen anyone since January 2007 when he first got his glasses. Anyhow, the eye doctor at sick kids isn’t the friendliest of people and sure has no manners or people skills. I guess not unusual considering the amount of kids that she sees everyday. She FINALLY checked his eyes just after 11am (our appointment was at 9am)and said that he was a -6 in each eye but wrote out a prescription for -4 because I had said how he is always taking them off. She said that maybe he would tolerate the -4. That was it.
Yesterday we were off to see Dr.Wiggins in Waterloo. I have been waiting for almost a year to take A to see him and was very excited! I have heard only great things about him and I can tell you, this man is AMAZING! Never in my life have I been so impressed with a doctor. It takes a lot for me to say this, but pretty much the minute I SAW him I knew he was great.
Well, my mommy instinct was very wrong in thinking that A didn’t need glasses. A is legally blind. His vision is 20/200. His glasses that he has are perfect for him. He NEEDS them. I was also able to see the world from A’s eyes. It was at this moment that I realized just how bad his eyes are and how much the world around me sucks seeing things that way. I felt guilt. Guilt because I have been the one thinking he doesn’t need them, therefore he doesn’t wear them. Well he will be wearing them EVERY waking moment in the day from now on!
Another interesting thing he did was to take a picture of A. He then passed it to me and told me that when I looked at it he wanted to know what I noticed right away. I wasn’t sure what to think and I took the picture. Right away I noticed that A is looking at the camera with his left eye but not his right! I couldn’t believe it!!!!! He has a lazy right eye and Dr. Wiggins says that he definitely favors his left eye and doesn’t always use his right. I have MILLIONS of pictures of this kid and I have NEVER EVER noticed this. But it does explain why A does better with toys on his left. When they are on his right he arches so that he is able to see them with his left eye.
A’s therapist from CNIB was there for the appointment and I had to apologize to her after for the way I have been so adamant that A didn’t need glasses. I will definitely take things that she says from now on to heart! Dr. Wiggins told me that it is VERY normal for parents to think the way that I did. Many times he said parents don’t find out how bad their children’s eyes are until they are in school! Kids compensate and don’t know any different than what they see. I guess it was the same as not finding out about him being deaf until he was 15 months old.
This doctor spent over an hour with me and A. I was a little emotional and he was great in helping me deal with how I felt and how much it totally sucks having a child that is deaf/blind. Still, A amazes me. He even amazed the three that were in there, including Dr.Wiggins. They did the part of the exam where they hold up cards and there is a little hole in the middle that they look through to see where A looks first. One side of the card has black/white lines and the other has nothing so they want the child to look at the black/white. Well after a couple of times, A was actually so focused on that little hole he wouldn’t look anywhere else. He knew that someone was behind there!
Dr.Wiggins must have asked me twenty times if I had anymore questions. He will be following up with A in six months so it will be great to see him again. I can’t even say enough about this man!
Now for some new pictures of my little man! With glasses!
Well I can’t believe it already, but my little man is three today!!! We had a birthday party on Sunday for him and thanks to all the kids he slept great that night!!
A hanging out with Leeann and her mom, Anne. I met Leeann at Toronto Sick Kids during our recent stay and we instantly connected. Her daughter was Ally who passed away in March. I was so happy that they came to A’s birthday, it meant a lot!
Well I need to get to bed. I just had to post his birthday post before going to bed because we are off to Sick Kids at 6:30am for an eye appointment. Nice start to your third birthday eh?!
Well we have entered June. A crazy month in this household for sure! SO much happening and SO much to look forward to! In 8 short days my little boy will be turning three years old! I can hardly believe it!
I have my FIRST dress fitting next week along with a trip to Toronto Sick Kids for A’s eyes and a trip to Waterloo to finally see Dr.Wiggins who we have been waiting almost a year to see!
We went to grandma and grandpa’s yesterday for a barbecue to celebrate grandpas birthday which is actually today. A was a show off and rolled over for everyone there to see it!
So my first birthday wish is to grandpa C, my dad, my friend, my hero.
He is an absolutely incredible man and one that I wouldn’t trade for the world. He has been there for me through SO much and I am so lucky to be able to call him My Dad. I can’t stop thinking about my wedding and having him walk me down the aisle. It is something I have dreamt of since I was a little girl and it is going to be so great to finally have this one dream come true! I can pretty much guarantee that it is going to be ONE of the hardest things in my life to get through without tears. Well actually I am pretty sure I won’t get through it without tears. LOL
So happy birthday Grandpa! We all love you!
And some pictures from yesterday…
Mady and her friend Sadie…
My sister and her new man…
My dad trying to read his birthday cards…
My brother and soon to be sister in law….congrats guys!
And the next birthday wish is for grandpa S who celebrates his day tomorrow! He is also an incredible man, who very shortly is going to be my father-in-law! And honestly, I don’t think I could have a better father-in-law than the one he IS! And I have to say that I am looking very forward to his speech that he has written for his favorite daughter in law! LOL We all love you!
Well our follow up was yesterday with complex care. I have to say that I didn’t find it very helpful but I kind of expected that. Bascially I told him how frustrated I have been with how A is doing. I took my notes and showed him how much he has been vomiting. He seemed a bit concerned about that so we are doing continuous feeds throughout the night and three small feeds during the day to see if that helps. If not then we will do an upper GI to see if he is refluxing past his fundo (which I think it not functioning) and then switch out to a gj tube again.
Last night was our first night of continuous and we had a nurse here which was nice. He did okay until about 6am and she said he was gagging and definitely refluxing. That continuous ended at 8am and then at 11am he got his first of three small feeds for the day. He gagged through the whole thing turning off colour constantly. After the feed was done he threw up three times.
Sunday night when I put him to bed he went down to 14 and I was ready to freak right out. I can’t even tell you how stressful this has been since he has come home. I feel like I have aged at least ten years. Anyhow, I was so fed up with his shitty sats at night sleeping (88) that I put oxygen on him. Guess what? He satted 98 ALL night and slept great. So Monday night I did the same and it worked. Right now he is napping on the couch satting 82. So I have the oxygen in front of his face and he is 96.
I told the doctor about this as well and he seemed okay with it. Of course I don’t think it is my job to find out what works best for A. Especially when you are talking feeds and needing oxygen. He is only getting .5L so the doctor is okay with it. If he sats 100 I just turn him down as I don’t want him sitting at 100 because of his hypoxic drive.
After that appointment we went and he had some bloodwork done after his feed for genetics along with a urine sample. He did very well and I can never get over how awesome these people are there that take blood!!!!
I also just found out that the approval for his DNA to go to the States just went through so we have at least a three month wait for that.
Tonight is exciting for all of us. In January I was contacted by a gentleman who wanted to grant A a wish. Because of being in hospital we were not able to do anything. He is finally coming tonight to meet A to see what he wants to wish for! He also told me that he has a large sum of money for J and I to catch up on things since spending so much time in hospital. How awesome is this!? I still have NO idea what to wish for….maybe he will have some great ideas!
Well our journey at the hospital has ended. We brought A home yesterday after 88 long days. I can hardly believe it. I told the docs on Thursday that I wanted to take him home and that I had enough. I just couldn’t do it anymore. Every time I tried to talk to someone I would cry. It didn’t even matter if it was about him.
He had a pretty big episode Saturday around 4pm and then again yesterday afternoon around 1pm. However I knew staying isn’t going to help and I need to try it here at home. If he needs to go back I will know. I have to say too that the discharge papers have many things in there that are not correct and things that I didn’t even know yet. Interesting. Lucky I didn’t have to sign it because there is no way that I would have.
Anyways, long story short we are home with no answers. Home hopefully for a while. A was very happy to be home last night and ended up falling asleep in his chair around 6pm. When he woke up at 7:30pm he had a pretty long episode that was pretty scary to me. I am sure hoping this isn’t going to continue. We had our nurse last night so I was able to get a good sleep.
Thanks everyone for all your thoughts throughout this ordeal. It means a lot to know so many people care.
In the car for the first time in a while on our day pass…
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I can hardly believe that we have been here for 13 weeks. I was worried about being admitted in the beginning for a couple never imagining what was to lie ahead.
Sorry that it has been so long since I have posted but I have been pretty down lately. A had his botox done on Tuesday March 26th…9 days ago. I have to say that I very disappointed since then. There is absolutely NO change in his saliva production. Well in a good way. He has more. And ever since having the botox he has this nasty cough and a TON of chest congestion. To the point where we have needed to suction him at night so he isn’t satting in the 70s while sleeping. The doctor who did the botox said it could take up to 12days but I can’t imagine that in three days there is going to be a miraculous outcome.
His episodes also started to happen again on Sunday during his nap. Yesterday was an hour long. The doctor was in here the whole time it was going on and I thought that I was going to lose it. I am so emotionally drained. I cried so much yesterday that I still have a headache today. I was so mad and frustrated. I laid him on his bed and just yelled that I can’t do this anymore. The nurse came over and hugged me very tight and told me that it wasn’t my fault. That I was doing what I need to do. And most of all, she told me that yes, it wasn’t fair. She is awesome. I just don’t understand why everything that we do just seems to complicate things. This was not supposed to happen after botox but once again A has other plans. This wasn’t even one of the risks or rare side effects!!!
At the end of his episode yesterday I told the doctor that I wanted to leave. I just want to go home. She told me that we could go by the end of the week because she is going off service so it would work well for her. So after some thinking I have decided that I might just wait to meet this new doctor on Monday. New eyes never hurt. And I figure I have been here so long already, that what the heck will another week hurt?
Then the patient rep that embarrassed me in the team meeting way back had the nerve to come in here yesterday. I was emotional the entire day even talking and he started to get all nice with me. Telling me that he can’t believe we are still here. How he can’t imagine how hard this is on me. Then the wrong line he said….I know how you feel. Really? You have a child that has been in hospital for 13 weeks with no answers? A child that goes blue too many times a day? I don’t think so. Of course I didn’t say this to him, but I did tell him that he didn’t know how it felt. That he goes home at the end of the day and can forget about what goes on here. It felt good.
On an up note, grandma and grandpa S came down on Saturday and stayed until Monday afternoon. J and his dad went to a Leaf game so his mom and I went and saw the show We Will Rock You. We had dinner first and then met up at the Hard Rock afterwards. It was so nice to get out and have fun. Plus I got to sleep in a real bed for three nights in a row at the hotel! Social work got Jeff and I one for the Friday night and then we stayed with his parents the next two nights.
So it looks like we will be home soon. The saddest part of this for me is that we are leaving without any much needed and wanted answers. Unless of course this next doctor is Dr. House?!
As you can tell I am excited about Christmas with counting sleeps. It is kind of a joke around here because J absolutely LOVES Christmas morning and is still a big kid at heart about it! Every Christmas that we have spent together he is up at about 5am, makes coffee and waits impatiently for me to get up. It is actually pretty cute! This will be our first Christmas here at home with A so we are pretty excited about the whole thing. I just wish that A understood what it all meant but hopefully next year! I cannot wait for him to believe in Santa and look forward to the big morning as much as his daddy!
Other than counting down days for Christmas things around here are pretty much the usual. A is still being horrible at night when we put him to bed and I really don’t know what to think about it. I know people tell me that it is a phase and such but it is so difficult to understand what is going on when he is not really himself during the day either.
Sunday night he almost went into one of his big spells and scared the crap out of daddy and I. Monday he had physio with Monique and he was NOT happy. About five minutes into it he was fussing/crying and AGAIN almost went into a spell. Which got me to thinking that I should have told the new neuro this that we saw a couple of weeks ago. You cannot “almost” go into a seizure. You either do or you don’t. So this makes me remember even more how I don’t believe that they are seizures. There are many times that he almost goes into one but then doesn’t. He looks like the beginning of them and at the end he looks the same, only thing is he skips the whole middle of them.
Monday I got my call back from the sleep clinic at Sick Kids and they have arranged for the ph probe along with the sleep study. They had no idea what an impedance probe is which just blows my mind considering they are one of the top children’s hospitals. Oh well guess I have to be happy with the ph probe. I was however very frustrated because I have two appointments on one day in January there anyways and this was the day that the lady said for the sleep study. I said for sure that would be great because then I would get two appointments over with and the sleep study that night. Much better than driving there two times! Well she had to call back and then decided that GI will not put in the probe BEFORE we see ENT because it could impede on their exam. I told her that I would be VERY surprised if they would do an exam that day as it has to do with blue spells. She then said that you don’t see ENT about blue spells. What?! Anyways I got it worked out for the same day except we will have to see ENT first which means an extra long day as they could only squeeze us in in the morning.
Now for some pictures! Yesterday grandma was here and thought A was ready for a nap. She had turned off his implant and changed the channel on the TV. Well that was it! He is so nosey during nap time that I have to shut off the TV or he’ll just watch it instead!
Well yesterday was the day that we went to meet the new neurologist that I have been waiting to see since October of 2006! I obviously had high hopes after such a long wait and with it being a new neurologist that we have never dealt with.
Before heading out…
Grandma and grandpa picked A and I up at 11am and we headed to Toronto. Our meeting was at 1pm and I spoke with his resident for about 45minutes before she left to go chat with the actual doctor I was wanting to see. We had talked about everything from pregnancy to the birth to his NICU stay and beyond.
Well long story short the doctor wasn’t very helpful at all. He came in and introduced himself and then went right into asking me to describe these “spells” that A has. Immediately he told me that he believed that they were seizures. I was so upset! Less than an hour earlier when I was describing them to his resident she agreed that if they had gotten better after the gj placement then they most likely were not seizures. And NOW I had this doctor telling me otherwise. I just don’t see how doctors can make a decision like this without ANY form of evidence. (I had meant to bring my video with me but of course I forgot it so I wasn’t able to show him.)
I told him that I was not willing to put A on meds for seizures if this wasn’t what was happening FOR SURE. Before I would even consider these to be seizures (which I highly doubt I ever will) I need everything else ruled out first. Cardiology is out so now we have ENT and his reflux issues left. And of course these two things have always been my thoughts as to what is happening.
We have a sleep study coming up which should be interesting. A will be attached to an eeg, a heart monitor, a sat monitor (with CO2 levels as well) along with probes on his arms and legs for movement. Throughout the night he will be observed for sleep disturbances (they don’t know what they are in for! LOL), oxygen desats and anything else happening. I am also trying to get an impedance probe organized as well to see what reflux issues are occurring at night. I am anticipating that this will show severe sleep apnea along with reflux. So we will just have to wait and see.
Besides yesterday things have been going well. A is the smiley guy I am used to and has actually been doing pretty well with sleeping the past four nights! (Knock on wood!) He does however have a new thing at night where he has this totally make you feel guilty cry if you leave his room. You have to be in his room or else! So I usually just hang out in there cleaning up, hanging his clothes…whatever to make him happy. The minute you walk out the tears come (which as all of you know NEVER happens with A) and he is pouting. So last night I was crawling out of his room so that he wouldn’t see me leave!!!
He also now is starting to understand “kiss” and thinks it is just hilarious!
Well things around here are slowly getting back to the norm. A is still on oxygen and we will hopefully be able to get rid of it after seeing the ped on Thursday. I currently have him between a quarter of a litre and half litre. I do wonder though if it is helping his with sleep because everyday for the past three days he is napping for three hours! Normally his naps are only maybe an hour if I’m lucky. He actually went down today at 1:30pm and he is still asleep and it is 4:50pm.
Now for my news of the day! This morning I got a call from cardiology at Mac. They were calling to inform me that they have an opening in the OR for A to have his long awaited echo next week. I was really thrown off with this as his pre-op was in March. Seems kinda funny to me that so much crap has been going on in the past week and they call with this appointment. Anyhow, I was a bit iffy on whether or not I wanted to say “yes” because I really wanted him to be seen at Sick Kids for this. I also don’t like that I was not able to talk to anyone about my concerns of A being put under a general anesthetic. I then told the lady I was speaking to about Sick Kids having a referral waiting for A but the files from Mac have not yet been sent over. It has been about three months since the first day I tried to get them transferred. She told me that she had not been approached with regards to sending all his cardiology reports over to Sick Kids. I however know different as I have spoken to them about four times and the secretary from Sick Kids has also called them twice. Anyways she then informed me that she had no problem sending all the reports over. What?! I wonder about all this….I have decided that I will take A to have his echo done for the main reason that it is going to be a different cardiologist than we have dealt with. I also said that I expect to talk to the doctor afterwards and I want answers.
Anyways next part of my good luck day. I called to speak to the nurse for the pulmonolgist that we saw in October. I wanted to know about the referrals that he said he was doing. She was absolutely wonderful and very helpful. The pulm had talked in length with Dr.Jacobson who was the ped that we saw at Sick Kids a while back. He was very concerned about A and what is happening but since he didn’t believe that it was related to his lungs there wasn’t much more he could do. So Dr. Jacobson took over for the referrals. His nurse however talked to me in length about what has been going on lately and was very caring and sympathetic. Not too often that you find someone like this. (Well for me anyways.) I asked her as well about the RSV shot for A but she did warn me that the pulm would probably be against it as at A’s weight it would be three needles which just isn’t nice. She said he is also getting past the point where they say that RSV would be helpful to him.
After talking to her I phoned the ped that we saw at Sick Kids to find out what was going on with the referral for ENT and the feeding study. Once again I talked to someone that was VERY helpful and caring. The ped wasn’t in but her secretary told me that she would be sure to get her to follow up with me tomorrow. I had also mentioned that I would like to see Dr.Papsin (ENT) as he was the one that did A’s cochlear implant and I really liked him. He also saw what A does when he is having a spell as he was very unstable in the OR during surgery. He had come out afterwards and told me what happened, that there was a team of them in there that were worried and lastly that it would be figured out. Well it never was figured out. When I asked the pulm about doing a specific referral to a certain ENT he said it couldn’t really be done. Well the lady today said that she will see to it that we get in with Dr.Papsin.
SO, maybe just maybe we will finally be getting somewhere!!!!!! I am not getting my hopes up quite yet BUT I am a little more optimistic.