So since my last post everything is pretty much the same. We went and saw neurology a month ago as we haven’t seen her in almost a year. I have to admit that she really has come a long way from way back in the day. I think it has been very difficult though as she has been A’s neuro since day one. So for years she blamed all of his issues on being a “preemie” and it wasn’t until we have seen her the last two times that she truly feels that he is missing another “diagnosis.”
Today we talked about A and how tight he is with his legs. We are going to get him fitted for “gators” that he will wear when he sleeps to help stretch his legs out. He used to have a very low tone over his entire body however over the last year or two things have changed and he is spastic most of the time in his lower half. A perfect example is how he sits HORRIBLY in his wheelchair and it is very odd to see him “relaxed” even while sitting. Arching is definitely his thing!
I mentioned that we are in the works of getting him a stander which she thought was great. She did tell me that he should spend at least 90 minutes a day in the stander to give him the effects that we need to give him.
Disappointed yet again.
It never fails that we truly seem to get the shitty end of things for A. Neuro wanted to know why he doesn’t have these things already? Had PT not talked to us about using gators? Hmmmm yet again I have no idea. I had asked his PT in the past about getting some sort of braces for his legs and I was told “he doesn’t need them.” So what am I supposed to do with that? These people are supposed to know what they are talking about right? HA! I should have known from our history that this isn’t the case.
Stander. Well *I* asked to first try one a LOONNNG time ago. I think A was about 15 months old the first time we tried one. We don’t have one yet because they are SO slow and keep messing around. We don’t have one because nothing ever seems to work for A the way that it should. And these standers are NOT cheap. The one that we just got the quote on is almost $5000!!! It is absolutely crazy and makes me sick to think that we as special needs families are totally taken advantage of!
Heck, A is almost 5 and we have YET to get a seating system for in the house. We have YET to get his wheelchair the way that it should be.
We will be going to her spasticity clinic in July. She will have her therapists there to look at A and we will go from there.
However on a good note we also met A’s new PT a few weeks ago. It was a blessing actually because his most recent PT was as useless to us as it gets. She however has left the company hence our new PT. She actually seemed to know what she is talking about. We really miss our old PT who moved away!!!
Next a dreaded word for me.
This has been the biggest stress in my life lately. Now don’t get me wrong, I really want A to go to school HOWEVER I am really really concerned, worried, scared…just about any word you can imagine.
J and I had a meeting about a couple of months ago with A’s homeschool. It was the first of a few that we will be having. So my biggest thing the last few years is that I don’t want A to have a nurse at school. However now with the trach we do not have a choice. Fine. But I told them that the ONLY way that he is going to school is if he has a nurse AND an EA. Period. No ifs and or buts. They said they could probably work that out.
Even still I am nervous. We were told that any time that A is to have an “episode” they have to call 911. I am sorry, but I don’t want to be called into the school everyday or the hospital for that matter because of his episodes. Now I did tell them that I do have an EA that I would like to work with him in school but they just say over and over that I can’t choose his EA. I realize this, but would you not be more comfortable with someone that KNOWS A and how to handle him then to have someone learn? Yes they would. I won’t be giving up my fight. I think they got the idea at the end of the meeting just how much I fight for this little man!
On Tuesday we had the much dreaded/feared appointment to get the results for his muscle and skin biopsies. All was NEGATIVE!!!!!!!! Actually the doctor said that A’s mitochondria is the best he has ever seen on a biopsy. Go figure eh?
He did however send me up for bloodwork as well as he is concerned about my repeated miscarriages. He thinks there is a possibility that I could have what is called Anti APL Syndrome. Long story short, lets just hope I DON’T have this. I am not sure when the results will be in.
Wednesday night we spent the night in hospital for a sleep study. His last one was in 2008 when it was done at Sick Kids. This should be very interesting to see the results to compare them to pre-trach.
There has been a lot more going on but I will get into that on my next post. I think this one is long enough already!
Oh where do I begin?! Well we have been home now for about five weeks and I have to say that things are going AWESOME! I really don’t know why I was so afraid of the “trach talk” way back when, but really it should have been a LONG time ago. And by a long time ago, I mean before A even came home from the NICU.
It breaks my heart to think that for four and a half years he has basically been suffering in silence. Unable to tell us that he cannot breathe right. Unable to tell us that his sleep was so crappy and he was up so many times a night because he would wake up needing air. The sad part is, is that all of this was KNOWN to the hospital where we spent 88 days back in 2008. They knew his sleep was horrible. The sleep study showed that he obstructed every five minutes. But yet they didn’t feel the need to tell me this as his mother? Instead I was told that “it wasn’t that bad.” I would hate to see then what they would consider BAD.
Feeds are going pretty good. I now have him up to a mixture of half and half with the two formulas, which gives him 37.5 calories per ounce. However he is still sitting at about 25lbs which is not really where we would like to see him. Weight is something that he definitely needs to gain! The hope is that now that he is not using so many calories to breathe that he will start gaining more. We are also only giving about 1200cals per day which his doctor feels is enough. So we will se and maybe have to up him a bit if he doesn’t start gaining something soon.
SLEEP. WOW WOW WOW is all I have to say. This child SLEEPS! I cannot believe the difference that the trach has made with just this alone. Do you know how odd it is to put your child to bed and he goes to sleep within about ten minutes? Do you know how odd it is to not be going up and down stairs fifty times before you even get to bed yourself? Do you know how odd it is to peak in at your child and they are satting about 95 CONSISTENTLY? Do you know how odd it is to not listen to his alarm go off pretty much ALL night? This is ALL so very odd to me!!!! For four and a half years I have been constantly getting out of bed. Constantly silencing his saturation alarm. Constantly trying to console him to go back to sleep. And now I do basically NOTHING. My little man can finally SLEEP. Finally get a good rest. Just flippin amazing!
Feeds. They are going okay. It is so weird after feeding A for his whole life during the night to be doing NO feeds and night and just feeds in the day. Right now I have him up to a rate of 155mls for a total of 230mls per feed. And he gets four in total.
Reflux. He seems to be doing okay reflux wise. He is down to 30mg/day of prevacid from 45mg.
Daytime. Everyone asks me if he seems better in the day since he is getting such a goods night sleep. And I have to say no. But this is only because A has always been such a happy wonderful kid. I used to wonder where he got all of his energy from when he slept so crappy at night! And to this day I cannot answer this.
Mommy and daddy. We are better than EVER. I feel like since coming home that I have a brand new son and a brand new husband. J has been helping out more than ever and it is so greatly appreciated. We had a long talk shortly after A came home and he told me that he realized after all that just went on with A of how close we were to possibly losing him. And now with the trach it is a whole new world for us. I never thought I could love J more than I did, but another WOW! Life is just awesome now!!!
A also had biopsies done on January 18th for the mito/metabolic issues. We will not be going back until the 20th of April for the results. My heart is kind of heavy knowing that we are so close to maybe discovering what could be going on with A. I am VERY scared but I try not to focus on it to much and just live each day with him as if it is our last. Life is too short to worry about things that may come up and even things that do come up are not always the “worst” thing that could happen.
I think I am scared too because J and I have been talking about having another baby. Well trying to anyways. And to be honest I would do ANYTHING to have another child. A healthy child. I think it would be so good for all three of us. But I know that I have to wait until we find out the results from the biopsies and go forward from there.
February 7th A got to skate with the Toronto Maple Leafs! Here are some pictures!
A also made the Leaf website on video from the skate. Go here and watch at about 38 seconds to see him being pushed by Bosak.
In other family news, my brother Shaun and his wife (my sister in law) Andrea were on the TV the other night. Andrea has been dealing with heart failure and in October of last year her life was being measured in hours. It was at this point that she had an LVAD placed (a mechanical heart) to keep her alive. She has been on the transplant list now for over 100 days and we all pray she will get it soon!
Please go and watch this. Just go HEREand on the right hand side click on the video Hope For Heart.
And today, 17 years ago I lost my Grandma C. I remember it like yesterday. One of the worst times of my life. I still get emotional when I think about her. I just wish she could have stayed to meet A and just be the wonderful part of my life growing up that she always was. RIP Grandma, I love you SOOOO much!
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 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!!!!
After set up for the sleep study…
I love how curious he is now!
Cuddles with Vickie…
February 25th with NPT tube…
Well it has been quite a week. I am sorry that I have not posted a recent update but I am just so tired of putting negative things on here. Seems A can never catch a break.
So the NPT tube that he had put in on Monday came out Tuesday morning. It didn’t help him at all and if anything it made him worse. The doctor wanted to leave it in until the afternoon (probably so he could see for himself that it wasn’t working) but I told him that if he didn’t get an RT in to take it out then I was taking it out. The RT was there within about ten minutes. He told me that if it was helping that I would definitely see the change. He said it is pretty amazing when it does work because the kids go from desatting to nothing. No such luck for A.
Wednesday I didn’t see ONE doctor all day. I did take some time out for myself because A had one of his favorite nurses on. So I took the streetcar down to a huge scrapbooking store to get some things for my wedding invitations that I will be making. It was nice to get away and do something that I wanted to do.
Thursday. Big team meeting. I have to tell you it was probably one of the hardest meetings that I have been to. There is nothing like walking into a room full of people staring at you and talking about your child. So the plan right now is that we are going to try the botox in his saliva glands. Because this has to be done under sedation I asked if they would do a CT scan of his chest at the same time. They said they would but warned me that it probably wasn’t going to give them clear answers and if anything it would probably complicate things. They also told me that one CT scan equals about 250 x-rays so to think about the radiation.
There was talk of sewing up his vocal cords so that he can’t pool secretions in his airway and of course the trach but all the docs there agreed that this would not be the next step. Those are life changing decisions that no one is comfortable making right now.
Long story short, the doctors really don’t feel that there is going to be an answer for A. And like they said, they can keep doing test after test after test but as they go it just gets more invasive and unfair to A. They were pretty positive that if there was an easy answer for what he is doing they would have found it. I am really starting to believe that.
Things got pretty emotional near the end when we had talked about everything. They said that they think we need to get A home within two weeks and let him live his life here instead of in the hospital. No one said anything in too many words, but I don’t think anyone in that room thinks that A is going to be around for a long time. Just the words they were using and the looks on their faces. This is REALLY tough for me to swallow. I don’t know what I would do without A. He is everything to me and I don’t want to be planning his funeral anytime soon. The thought of not having him here brings me to tears. It makes me feel SO angry inside. I know I shouldn’t think negative but it is hard not to. I am pretty good at reading people and this is what I felt at the meeting. I came home last night because I have some things to do here for the wedding and I just wanted to go back after an hour of being here. Just looking at his toys makes me cry. I can’t even go in his room without crying so his bedroom door is closed.
Well I got the results of the sleep study today. It sure doesn’t make anything more clear or easy! So basically it shows that A has high CO2 levels like I said before. However after I left I guess his CO2 stabled out at about 56. Still a bit higher than usual but much better than 80. They tried a few more times to shut off his .5L of oxygen but then he would desat so they would have to turn it back on. They then tried him at higher amounts like 1L and 2L. This would then increase his CO2 even higher. What does this mean? Well it means that oxygen is not a good thing for A. However at .5L it is okay…just no more than that. Oxygen at higher levels than this becomes toxic to him basically. This also explains why he doesn’t do well with sedation of any sort.
This also tells them that A is requiring a higher CO2 level than normal to have the drive to breathe. They think that over time his baseline of say 45 for CO2 has risen. So all in all he needs the hypoxia to make him breathe. Confusing? Yes! But as we all know, A has NEVER been easy!!!
As well as this, the sleep study showed significant obstruction. Where exactly? Well we are not sure. They are thinking that he is pooling his secretions in his airway and some of this is going into his lungs…micro aspirations. On the video, you can see him moving around and then it is like once they are clear he goes back to sleep. What can be done for this? Nothing really. There is no way to really stop the aspiration of his saliva. Over time can this cause harm? Yes, but it is hard to say how long or when things would get worse.
They also believe there is some floppiness to his airway when he is in deep sleep. Not surprising to them considering he is an ex preemie who has cerebral palsy.
So all in all it gives at least some idea to what is happening, but frustrating because there is nothing we can do for either as a fix. I did ask why the pooling seems to have gotten worse since the fundo. That is if they think the desats during the day are related to this. They don’t have the answer, so I am hoping that maybe his surgeon can provide some input on this when we meet up next week.
I saw ENT again today and he is very concerned about Ashton hitting single digit numbers for his oxygen. He did bring up the trach again but I refuse to talk about this until we have the team meeting.
So that is about it for now….
Well after my last post I ended up meeting with the chest doctor that I had been wanting to see along with one of his collegues and my complex care doctor. I also asked the charge nurse to come with me because she was with A the other day when he had a desat of 11. To be honest the meeting didn’t really help me much but at least now they know how I am feeling and that I am not just going to sit here day after day with no answers. I asked the chest team what their thoughts were on ILD but they didn’t feel that right now it was something to look at because his CO2 levels have never really been a huge issue. Add on to that, the only way to diagnose is to do a biopsy.
Later on I went and met with patient rep to discuss my issues and problems. I had ended up calling them when A was in one of his little episodes and I was at my wits end. I cannot keep on going watching him suffer and struggle. I had my social worker come with me and she was able to take notes and help me out a bit. After hearing my story he told me that he thinks that I better put on my seatbelt and hold on for the ride. Never heard it put that way before! He was very wonderful to talk to and I am hoping that his idea is going to help out a bit. The plan that we came up with was for me to write out a list of questions that I have for each doctor that I am dealing with. I did that with my social worker today and we gave him the copy. Tomorrow he will be distributing the list to all of the doctors and then next week we will have a team meeting. He will come along with me and he said that there will be no going around in circles and all of the questions will be answered. The reason for him giving them tomorrow is so that they have time to think about them and put them down in writing for me as well. This way there cannot be any confusion with what is said and what is happening.
So after this I come back upstairs and find out that A is going for a sleep study! Six weeks to the day that we came in for one. So that was done last night and I was really not thinking it would show much. However I stayed down there for the first few hours to watch what was going on. A was sleeping and satting 100% but his CO2 level was between 70-80. The sleep tech then came in and turned off the oxygen to see what would happen since the doctor wanted it done off O2 anyways. Well after a few minutes his sats would drop but so would his CO2. So then the oxygen would go back on and up would come his sats and CO2. Strange. Just automatically made me think to the meeting where they said that they weren’t concerned about his lungs because his CO2 levels have not really been an issue. I have been dying today to find out what it showed but looks like it will be tomorrow. I have to admit that I am kind of scared as to what it will show. I just hope that it will be an answer to all of the issues that we have been having.
A and I had some fun today and went and played bingo with the Toronto firefighters. There was really cool prizes and it was nice to be out of this little room!!!
I am off to go sleep in the playroom now…..fingers crossed this sleep study will give some insight!!