Well today has been a much better day around here. I have still been sleeping out on the couch with A at night but think that tonight he may be okay to go back into his bed and me into mine! He is still very congested sounding and I have him on a half litre of oxygen, sometimes bumping it up to 1litre.
Okay, I have to say thank you to all of the moms that have watched my video and given me their opinions. I have to say that it really varies from person to person! I have four moms saying that it looks like a seizure, I had two say it looked reflux related and a few others that said no to a seizure.
Here is why I do NOT think they are seizures. He spent 227 in the NICU before coming home on oxygen, g tube feeds and an apnea monitor on Jan23’06. The day after coming home he had one of these “spells”. (He had probably five in the NICU) Within the next four days he had a total of 7. He was readmitted and ended up in the PICU on a vent. He continued with these spells even on the vent. At one point they even called a code blue because he was going so low in oxygen sats and heart rate.
***These spells that occur, he drops his sats to the 20s along with his heart rate. He goes completely off colour, there is no chest movement and he goes stiff. There is no way to get air into him…when they would bag him it would just pop off.***
They diagnosed him with ALTES-apparent life threatening events due to reflux. They then changed his g tube to a gj tube. On Feb23’06 he came home again. He went all the way until July’06 and had two spells in one day. We just happened to be doing an oxygen trend and his sats were 23 and heart rate of 42. Took him to emergency but they didn’t do anything.
He went all the way until April 4’07 when he had another one. Then June 13th’07 another one. This one was at a hospital that has a wonderful reputation. Once again, nothing was done. Now this past Wednesday he had another one. This one was just over three minutes long. I called 911 he was taken in and the doc is saying seizures. I have a VERY hard time with this b/c my gut says it isn’t a seizure. I mean I have had about ten doctors see him do these spells and when I would say “seizure” they said NO.
SO, I guess my questions are these. If it IS seizure then why have SO many doctors said no? If it is seizures then why did the spells stop after the gj placement for so long? If it is seizures how come nothing has shown on the two eegs that he has had? If it is seizures then why does his oxygen go so low? I have heard that it is not common to go off colour with seizures, let alone down to the 20s. I also had one mom tell me that her son was blue but was still satting in the 90s.
My gut tells me that it is something to do with his reflux and/or airway. His last bronchoscopy was in February of 2006. I have been asking and asking for another but never got anywhere. This was until last month when I met a new doctor. He told me that he would be arranging a bronch, a sleep study and a feeding study. Well it has been six weeks and I haven’t heard a thing.
We will also be seeing a new neurologist in the beginning of December so maybe they will have some thoughts about what could be happening. Two neurologists that I have seen have both said no to seizures as well. I am just so frustrated with all of this and I wonder WHY doctors are so nonchalant about what is happening…
Now to leave with some new great pictures…
If ANYONE has any ideas on what could be happening PLEASE send me a message. At this point I am willing to look at everything!!!!!! And also, is a bronch enough to tell if it IS airway related or is there something else I should be asking for as well? I might as well try and get all the things done at once….
First some pictures of yesterday when A was playing with Dawn…
So today was the big day where A FINALLY got to see a lung specialist! I still cannot believe that he has never had to see one considering that he came home on oxygen and has had so much trouble with his breathing and blue spells.
Waiting for the doctor sitting in a gold seat from Maple Leaf Gardens!
Anyhow the doctor was very great. He had read over A’s file so he knew some of his history to speak with me. One of his biggest concerns is the ALTES that A has had in the past. Again, FINALLY someone that cares about my little man not breathing besides me!
After listening to A and speaking to me for a good while, asking questions and talking things over he has decided on a few things. He does not believe that A has allergies or asthma. This is a very good thing. He also believes that a lot of A’s issues stem from his upper airway and the fact that it doesn’t have muscle to help control swallowing and maintaining an open airway. This would explain his blue spells that he has and the big events as well. When you add reflux to the issue it can make things worse which is obviously what is happening.
When talking about A’s sleeping it is obvious that he may have some issues with sleep apnea. He is going to be ordering a sleep study so that we can see what exactly is going on and whether or not it is obstructive. He warned me that A is at risk for this either now or later because of his past history so it wouldn’t surprise me if that is what is happening now. I am actually kind of excited about the sleep study because I am sure that it can show US what is happening at night.
Second A will be having a feeding study. He wants to know if A is aspirating into his lungs which can cause a ton more lung problems for him. I was supposed to have a feeding study done at Sick Kids before this appointment but they decided to call me last week and tell me that I could go to Mac for that and they were not going to do one. He told me that he will put in the request again.
Third, A will be having a bronchoscopy. The last time that he had one of these was in February of 2006 while in PICU. However this being said it was done by an ENT that has totally messed up with A’s files. I found out today that the report he did after the surgery in December of 2005 while in NICU that he in fact says he never did a laser surgery. WHAT?! I remember EVERYTHING about that day and the week after. It was December 16th 2005 and he came out on a vent. His airway and tongue were SO swollen that he ended up on the vent much longer than anticipated. Anyways I am just blown away that a surgeon doesn’t know what he did or if he did it. Obviously the ENT that we will be seeing is NOT this guy and hopefully the one that did A’s cochlear implant surgery! It would be great to have him as well because he saw what A does while in surgery and in recovery. He told me on June 11th of this year right after surgery that he was worried and he would get to the bottom of it. NOTHING was done. Ashton even had one of his ALTES in the hospital yet nothing was done. Oh sorry, they suctioned him.
Now to the scary part. I will be speaking to a surgeon after all tests are completed about a possible tracheostomy. Hmmm I’ll tell you I could feel the tears well up in my eyes. I can’t imagine WHY my little man has to go through one thing after the other. A trach was actually brought up in the PICU back in February of 2006 but because the spells stopped after the gj they decided against it. I had blocked it from my mind and never looked back.
Well gj tube is still in 20 months later and yet A has still had ALTES. Yes they are WAY less frequent but the happenings are scary enough. It is like the doctor said, we are very lucky that A has recovered on his own each and every time that he has had one, but what if he didn’t?
I think he liked this doctor too!
After that appointment we did some of the usual shopping at the hospital and grabbed something to eat. At 1pm we met with his audiologist for some fine tuning on his implant. He did wonderful in the sound booth turning to sounds at even 20db!!! Everyday I am more amazed with this implant and what it has done for him!
Back at home wearing his new shirt that grandma bought him. My little future NHL star!
One day at a time….
Yesterday I took A over to Alina and Sophia’s for a long overdue playdate. The girls birthday was on August 13th and I still had not given them their presents! It was a really nice day so we spent it outside. A was not the happiest boy though so things didn’t go as nicely as I had wished. But hey, that’s what happens sometimes with kids.
Sophia and A on the swings…he wasn’t sure what to think at first as you can tell but he then changed his tune…
There are the smiles!
Sophia giving kisses…
Alina woke up for some playtime however A wanted to sleep…
Haha way too cute…
Sophia opening her present…
Alina and her thumb!
Alina opening her present…
After leaving there we headed over to Mac for his appointment with a respirologist. I should add his FIRST appointment with one which is VERY odd to me considering that he was on oxygen until 18months of age.
Anyhow, I was not going to go because I am seeing a pulmonologist next month at Sick Kids but I did go. I am very happy that I did as well. She was a very good doctor and totally listened to everything that I had to say. She didn’t rush me and was very interested in A. I was basically sent to see her because of the whole fundo idea. However I am happy to say that she agrees with me that the fundo is not the route to go! WOO HOO someone on my side!
The first five minutes she spent just looking at him and watching him. Then she turned to me and said “you take very good care of him.” I didn’t really know what to say as I have not heard that from a doctor that I don’t know at all. I said thanks and she said “really, I can tell just by sitting here that you do. And even his shoes match his shirt.” LOL Yep that is me! He is a stylin boy, I can give myself that much.
She thinks that A’s reflux is basically all upper airway which means that a fundo would not help him at all. Hmmmm what I have been saying for months? Basically it is like he is pooling all of his saliva in his upper airway and then he will gag and it comes up. I have been saying for about a year now that I don’t think what he is vomiting is coming from his stomach. It is too thick and just doesn’t seem like it would be. The odd time he does vomit formula which is a big deal considering he has a gj tube but it is very rare for this to happen.
She also asked me who decided that not feeding him orally was a good idea. LOL Well long story short that was taken away from him when he was readmitted after only four days home from the NICU. I had NO say at all and this is when the nightmare began.
Another question she had was why he hasn’t had another scope of his airway done. The last time was February of 2006 while in the ICU. Well I had asked for one but I was told that it was unessary testing. What else can I do? I think she got the hint that I was REALLY frustrated with doctors and the care that A has received. I always feel like I am going in circles and it is so hard to keep fighting for what I believe in when I get no where. I had also told her that he had laser surgery on his airway in December of 05 and when he was readmitted the same surgeon/ENT told me that his laryngeal malaysia was back. Back??!!??! She was confused! Now I am even more confused than I ever was too.
Next question. Why hasn’t he had another echo? Hmmm well we had pre-op for an echo in March of this year. STILL haven’t heard when it is. I have called and I just get told that they need OR time and until something is cancelled he has to wait.
The echo came up when we were discussing his ALTEs-apparent life threatening events. Why she wanted to know has no one looked further into them? Hmmm I have been wondering that since they started happening. Being told by a doctor in ICU that what A does scares him and that he has no idea what to say doesn’t make me feel much better. Being told that every time these spells happen there is a chance that he will not come out of them isn’t helpful either. Being told to make sure that I know CPR doesn’t help either. Besides if the ICU can’t bag him and get air into him during a code blue then how the heck can I do it here at home?!?!?
I feel like I might finally be getting somewhere. I think that maybe, just maybe I have found someone that WANTS to help A.
A waiting for the doctor at McMaster…go figure, now he’s happy!
Laughing away at something…
A with Bonnie from the NICU. We had not seen her in almost a year and she couldn’t get over how big he was! She was an awesome nurse and very caring and true.
A last night before he went to bed sitting with daddy. A loves daddy time at night and is always so much calmer with him than me. I guess it is a nice break for me though 🙂
Well I am sorry that it has been a while since I have done a post! I know that I have received a few concerned emails from people. I am happy to report that A has NOT had another of his life threatening events. I also wanted to thank people for their concerns, caring and thoughts on what could be happening. I do want to say that we know it is NOT bronchospasms. The only answer the docs have ever had was that they are ALTES-apparent life threatening events.
I took A to see his pediatrician on Thursday. I of course knew that he wouldn’t have answers for me as to why he has these ALTES. We both did agree that it is probably related to his reflux (which most ALTES are) because of how bad it has gotten over the past couple of months. So we increased his prevacid from 15mg/day to 30mg/day. I really hope that it will work! 15mg is actually an adult dose already so I hope the 30mg stops his vomiting.
Now his doctor was also a little concerned because like I have said, ALTES usually occur to babies under the age of one. With A almost being two this is strange. Does this surprise anyone that knows A and his history? NOPE!
IF he was to have another spell we are supposed to start CPR right away and call 911. Now with A’s history we of course know that by the time the ambulance was to come A would probably be fine, but like his doctor said it could be the time when he doesn’t start to breathe again and then at least they will be on the way. I can’t even tell you how scary this is for me. I have ALWAYS been a worrier and now having A can really be hard to deal with the worrying that goes on. There are some nights (I find nights worse for me) that I lay in bed and will think and think so much I get crazy with it! I don’t know what I would do if I lost A and at night when I think about it I can just keep it going on and on. I think about if he did pass, what would I do? Would Jeff and I stay together? What would I say at the funeral? It is nuts, but because I worry TOO much sometimes it is hard!
Anyhow, I will start with a few pictures from last week that I never did get to post. These first ones are him sitting like a big boy in his cool Cars chair!
A and his best buddy…
My little man sitting on the couch…
Now on Thursday evening we all got packed up and headed to C-town for the weekend. I was VERY nervous about even going of course with A having that spell but I figured that it didn’t really matter where we were.
We didn’t get in to grandma and grandpa’s house until around 11pm. A was very tired so we just got him ready and put him to bed.
A sitting in his seat watching TV…
A cuddling with daddy…
A and grandma…she was very tired! She had waited up for us on Thursday night to get there and didn’t get to bed until just after midnight and had to be up for work at 4am. Then she worked a full day on Friday and this was VERY late!
Okay now we are onto bath time. Daddy and I had given him a bath in the morning on Friday. A has always been VERY vocal in the tub and LOVES the water. So we love to just sit and listen to him and watch him move around. The kid really thinks he is swimming or something because he is SO active!
Anyhow, lately A has been playing with the sound “ffff”. Well, I am happy to report that A has said his first word (we can’t count it though really since he has no hearing!) and all of a sudden he said “*uck”! J and I looked at each other and back down at A. Of course we know that A has NO IDEA what he said but in a silly way we were excited that he said ANYTHING! I then said to J how A has been playing with his “fff” sound lately and it was probably just one of those things. Well wouldn’t you know it he says it again! We were bad and started laughing (which I know you should NOT do) but it was too funny. And when you have a child that has NEVER said anything it is still exciting.
So we tell grandma and grandpa and they kind of brushed it off of course. Well this bath below A was going on and on. Grandma was up there with us and all of a sudden A says “*uckin”. WHAT!??!!? Well there were three witnesses to this one and it was DEFINITELY what he said.
Well now onto the adorable bath pictures….
A sleeping with Lady curled up with him. I had to take this picture because Lady never really wants anything to do with A. She has never really been interested with him since he has come home but yet she wanted to be there constantly. We only took her with us and Cujo went to grandma and grandpa Clegg’s.
A and daddy watching the Leaf game. Wow that was quite the game!
Easter morning. Well I should say afternoon! Grandma and grandpa got A this Toronto table!
Aunt K and A at great grandma and grandpa’s for dinner last night.
A and great grandma…
Well today was going good until about 1pm. A didn’t get up until grandma got here just after 10am and he had a pretty good night. He played with grandma for a good while but started fussing like he was tired already. So around noon he was fast asleep on the couch.
At 1pm he started moving around like he had gas and was trying to poop. He had turned his head to the other side and started gagging. Grandma had turned him over to change his bum and I noticed he was going to throw up. I grabbed the blanket and he threw up a bit and then was heaving. I noticed he was starting to go off colour so I sat him up a bit. Then I realized that he was going into one of his spells from the past. I was a mess. I picked him up and he was totally stiff and VERY VERY blue. There was no chest movement or breathing happening. I put him down and went to find the phone. I couldn’t find it right away because I was so frazzled.
When I came back into the living room my mom was holding him and I thought that he was gone. He was not the colour he was at first. He was almost grey looking. Eyes were open but glossy and he just didn’t look with it. I am glad that she was here with me because I would have been way more panicked if she wasn’t.
She sat with him on the couch and it took a good five minutes for him to look “normal” to me. He was very pale, in a cold sweat and exhausted. I have never seen him like this after he used to have his spells. He was always right back to his normal self. Almost with the snap of fingers.
I called his pediatrician but the office is closed on Wednesday afternoons. I will be taking him in tomorrow to talk to him. Not that I will get any answers but I want him to know what has happened.
I can’t even begin to describe how I feel about today. It is the scariest thing ever and I know that every time A does this there is the chance that his heart is going to stop. Stimulation, blowing in his face…nothing helps. It is kind of like you just have to wait until he starts breathing. When he had these spells in the PICU (on a vent) the docs could not figure it out. When they would bag him, it would pop. It was impossible to get air into him. That is when I found out that they are called ALTES-apparent life threatening events. Fifty percent of the time there is no underlying issue.
I am a big worry wart and things like this just don’t sit well with me. I am so afraid that I am going to lose him one day. I was just recently feeling like things are back on track with him, his implant is on the move, sleeping better…of course I have been very worried about his vomiting and I really think that is part of the problem now with what happened today. Now the docs need to step up and do their part to figure out what to do with him.
Well I am off to bed with A’s monitor on full. Going to be a rough night.
One year ago today A returned to Mac. He was having ALTEs (apparent life threatening events) that we were told in NICU not to worry about. He didn’t have any for the month of January until the day after we got him home, go figure. However Jeff and I were so used to seeing him do this that we didn’t think much of it although it was VERY scary to watch! (It wasn’t until later on that we really found out what they were called and how serious they were.) So he was on the peds floor, and going from the NICU to peds is like night and day. It was very hard on me but I sure wasn’t expecting the whole thing to turn into what it did.
During these spells his heart rate would be between 20-40 and his oxygen saturation’s would be around 20. There would be no chest movement and he really looked like he was lifeless. Now anyone who knows what these mean knows how scary this would be! Yet when A would finally start to breathe you would never know by his behaviour or anything else that something like that had just occurred. And to look back and think of them telling me in the NICU that it wasn’t a bad thing and just to wait and A would come out of them. It wasn’t until later on that I learned that every time that he had one of these spells there was a chance that he would NOT come out of it! More of this story to continue later….
Well not much to say for today! It was actually a nice, quiet relaxing day for me. I got up with A at 9am (bonus!) and we did a little bit of his physio. I then put on one of his Einstein DVDs so I could clean up a little around here. After daddy got up I went out for a little bit and when I got home he went to the Storm game with a friend of his.
Grandma and grandpa came over after the game for dinner. We had spaghetti (yes again, I had tons of sauce left over!) A was really good today and should sleep pretty well tonight considering that he only had one nap today from about noon until 2pm.
I don’t even have any pictures for today! Tonight we watched the videos that I took of A and Alina. Wow I could just watch them over and over again! Those two kids together are just amazing!
Well I am off to bed…