Sunday night we headed over to watch the Grey Cup with grandma, grandpa and their friends after getting our family Christmas pictures done. WOW that was not fun and I can’t believe how grumpy this kid is when it comes to picture time! Here at home he smiles as soon as he sees the camera but yet whenever we go for photos he is the most miserable child ever! I did everything but hang upside down to get a smile out of him!
Hanging out watching football…
Notice how he is holding BOTH of his socks! Way to go A!
Well we had quite the day yesterday at Mac for A’s echo! Grandma came and picked us up at 6:30am and we were there for 7:30am. A was in a super mood which was surprising as I had to wake him up and he didn’t sleep much on Sunday night.
Mommy in her scrubs and one happy boy!
At 9am we were taken over to the OR with A. I then had a chance to talk to the nurses and the anesthetist about A being put under with a general anesthetic. I am always very concerned because he doesn’t do well afterwards coming out of it. The anesthetist decided that they would try and do the echo without the general. At 9:45am A was taken into the OR. At 10:30am the nurse came to get me to go into the recovery room to see A. I was immediately basically thrown onto a stretcher as another nurse took my coat and purse from me. A was then handed to me and it was obvious that he wasn’t doing too well. I thought that they had ended up doing the general and this was the problem.
The anesthetist then came over to talk to me about how things were done and her concern on A dropping his sats to the 50s and 60s continuously on six litres of oxygen. I said to her that this is ALWAYS how he behaves after a general anesthetic. This is when she told me that he didn’t have one. He didn’t even really have sedation. The only thing he had was a “whiff” of nitrous oxide which she said was enough to last maybe ten minutes. What?! Then what is going on?! No one knew. They were suctioning and did a breathing treatment. He went to sleep on me and was doing “okay” at this point with the odd dip into the 70s. However as soon as he would start to wake up and move he would start again with the drops.
The cardiologist came in to speak to me and that is when I got the great news that A does not have any cardiac issues! A year ago his echo showed that one of the vessels that grows in the muscle of the heart was actually turned into his left chamber and they were concerned about that. It corrected itself though so we are free of cardiology!
Finally at about 1pm A was transferred out of the PACU and into the day surgery recovery. However his dips still continued and I was getting VERY frustrated. I just don’t understand how this goes on and on but yet NOTHING is done?! Grandma was finally able to join us and A went right to sleep when we laid him on his belly and gave him his lifesaving soother. The nurse had his oxygen turned down to just under a litre and he was satting 80-84 consistent. Finally about 4:30pm he was up to 88-90 consistently. I however was not pleased with all this going on and just wanted to get to the bottom of it. The anesthetist kept coming in and was worried about what was happening. She then mentioned that he might be admitted. I of course fought that because I don’t need him catching something else up in the ped ward. I then asked what was going to be done if he was admitted. Nothing….just observation was her answer. Well I can observe him at home and we have oxygen here.
When I was talking to her later on I asked what she thought was happening. She immediately said airway issues. Thank you! That is what I have been saying for so long now I don’t even remember!!!!!! But then of course it comes down to the fact that no matter where we are (hospital) and he does this NOTHING is done. No tests are ordered and we are sent on our way. I just don’t get it.
At about 5pm A woke up and I was trying to keep him happy. The anesthetist wanted to see him awake and what he was up to before sending us home. Well wouldn’t you know it he was not happy and constantly dropping to the 60s,70s and so on. The only way to keep him happy was giving him water! Of course I automatically think he has a fever because he only drinks with a fever but nope. Probably the nitrous and all the oxygen. Grandma couldn’t give it to him fast enough! LOL
FINALLY at 6pm she said we could go as long as he was put back on the oxygen here at home and that if I was at all concerned that I would take him in. Sure thing! (I had to laugh in my head because EVEN when I DO take him anywhere there are no answers. *^$& even calling 911 didn’t get us anywhere. How sad is this?!??!
We were home about 7:30pm and A went right to sleep. He did well last night and is a happy guy today. Still on a half litre of oxygen but home….
Today we had our follow up with A’s paediatrician. Oxygen is now off but we will be able to keep it here at the house for a year now which will be nice in case he gets sick and needs it. We talked a bit more about A’s spell being seizures and he seemed okay with me not agreeing that this is what is happening. But like he said, it has to be neurological, cardiac (which we don’t believe it is), airway related or reflux. Now we do know that A does have neurological issues and reflux. I have myself ALWAYS believed that he has some airway issues happening but it has never been investigated to my standard.
His ped was doing a referral for A as well to London Children’s Hospital for a gj button! I hope that things get going with this too because I would love to see how A would handle small g tube feeds. Even if I have to do j feeds during the night to get most of his calories into him it would be awesome to get to the point where we could do some bolus g tube feeds.
Sick Kids called AGAIN today. Yes, it is crazy how for some reason everything is coming together but lets all keep our fingers crossed that we continue this way! They were just calling to let me know that the referral for ENT was done and specifically for Dr. Papsin which is exactly who I want!
The other team at Sick Kids called yesterday to let me know that the feeding study was being arranged as well as the sleep study. I can hardly believe it!
I put up our Christmas tree on Tuesday night so here are some pictures from then until tonight!
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 🙂