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!
So the issues with A continue as usual at this household. We are having problems with feeding and sleeping and of course along with that comes the awful desats that go on ALL night.
For about the past week the nurses have had to use oxygen at some point with A during the night. I didn’t really think much of it because they have to administer oxygen if his saturations go below 90 for greater than two minutes. Well anyone who knows A knows that this happens A LOT. Anyhow, two nights ago, Friday night was HORRID. It brought me right back to the days when we brought A home from the NICU. I would never want to relive those days, and honestly sometimes I wonder how I even did survive back then.
When I put A down on Friday night and hooked him up to his monitor, he was sitting about mid 70s. He was sound asleep. I tipped his head back a little and he came and hovered around 84. This is NOT good enough. For about twenty minutes I just stood there watching him wondering what the heck was going on. I still don’t know what to think.
I came downstairs and grabbed some nasal prongs, tape and an oxygen tank. Once I got up to his room he went to 91 and stayed there. This is still not really good enough for me because it isn’t the norm when he is sound asleep.
Basically from 1am until 5:30am I was in there about every five minutes to place oxygen in front of his face or to try and move him to a position where his oxygen saturations would be better.
Feeds. I am having so much trouble getting the required amount into him in a 24 hour period. I really wish sometimes that we didn’t need food to survive! As you all know, he has been off of blended food since getting sick in October and gaining weight. I talked to his dietician on Thursday again and she said to maybe try adding just avocados in with the formula to make it a little thicker and maybe that would help go down easier. Well within thirty seconds of receiving only 30mls of food he threw up. He was gagging constantly and I had to pull all of the food back out of his tummy. This is very strange as well because he had avocado every single day in his blend of food.
So in the day time I have to give him a total of 750mls and at night he gets 500mls. This just does not work! I am so afraid that he is aspirating which in turn is causing his lungs to get worse-which we really CANNOT let happen. This would explain the crappy oxygen saturations. Thankfully we are seeing his respirologist in a weeks time and hopefully he will have some insight into what we should do. I know he did speak last time about admitting A into ICU for a couple of days to trial CPAP and BI PAP but I just didn’t think that would work because A has a soother. However he has not had his soother now in about six weeks! Something really needs to be done though because he cannot go on the way he has been.
A weighed in at 27.6lbs last night. Seems like he has stabalized there for a bit so that is good. Much better than 25lbs!
We just got home today from getting his second dose of the H1N1 vaccine. So the continuation of our hibernating will happen for about three more weeks. And even then we have to be careful as he has not had his regular season flu shot! Ugh neverending worry I’ll tell you!
On our way out of the mall where his doctor is we stopped at the one store. I was looking at the Toronto Maple Leaf stuff and a lady was trying to get around me and A. Once she got down the aisle she wanted she turned to me and asked me if I was his mom. I said yes. She held her hands to her chest and with tears in her eyes told me that she admired me. I said thank you. She told me she thought he was a gorgeous boy-ha we all know that!-I again said thank you. And she told me, no thank you for doing what you do. To give him life. I told her he gave himself life. He fought to be here. She gave me a hug and again said she admired me. I said thank you again and told her that it is nice to hear such kind comments from people. Totally made my day. It is not too often that a complete stranger says anything like this to you. Why can’t the world have more people like her in it???
So I have some very exciting news to share with you all! A has gained weight. Yes, you read that right. We have been really struggling with A to gain weight for an eternity. To be exact, about two years he has hovered around 23-25 pounds. It has been very frustrating for me to say the least as I was getting as many calories into him as I could. I have been working SO hard to do the blended diet with him since his gj tube was changed to a g tube last February when he had his fundoplication.
On October 22nd A’s dietician had come to weigh him. He had gained about two pounds since we saw her on October 8th. This was VERY odd to me because Ashton had been sick and was on just formula for the whole week prior to her coming here. As well, instead of the usual 1700calories per day he was getting on blended, he was only getting about 1200calories per day. This seemed VERY odd to both of us. So I agreed to continue with just formula until she came this past Thursday. Low and behold, he gained TWO more pounds! So my little man is now 28lbs!!!! We are not really too sure what to make of this but I am continuing as we are now to see what he will weigh when she comes on November 19th. I told her that if we EVER hit 30lbs I am going to have a huge party! A was 28lbs at one point last August from her notes, however it was one of those times where we didn’t really believe it.
A few thoughts go through my head about this. It seems that obviously A’s body does not use the blended food probably to do what it needs to do. Problems with digestion. Not absorbing properly. Who knows. I feel kind of bad because for so long we have been doing the BD and now I know that obviously he wasn’t getting what he really needed on a day to day basis. I feel like this past 21 months of doing BD and working so hard has been a waste. It sucks when you think you are doing something wonderful for your child and then it doesn’t work out. I really really wanted this BD to be successful because I really don’t like the idea of A eating out of a can every single day of his life. I guess I am just going to have to do what works and what is best for him though right now.
J said to me the other night that he could tell A was gaining weight. And when I really looked, I can tell too. You can’t see his ribs anymore like you used to. Makes this eating out of a can seem worth it!
An update now on Auntie A. She is still in Toronto at the hospital. It will be two weeks tomorrow that she had her LVAD placed. I have not been down there to see her since October 27th when I took J down to see Metallica. When I saw her that night, she was in a lot of pain and really tired. It was really hard to see her like that. However that was expected as she was only two days out of having a MAJOR MAJOR surgery.
I spoke with her last night. First time we have REALLY talked since she has been taken to Toronto. She sounds very shaky when talking and she thinks it is the LVAD because it is always running and it does run at almost 9000 RPM. What a trooper she is. Amazing.
She is pretty scared to come home, as I can only imagine! My brother took her outside yesterday and she said that was really scary. I can’t imagine how she will feel when she does go home. Home is a long way from the hospital in Toronto! It is even scarier for her because the chances of EMS or firefighters even knowing what an LVAD is, is scarce. So if they have to call 911 because they need help, really it probably won’t be of much help. She told me that just down on another floor in the same hospital they had NO idea what an LVAD was.
They practiced yesterday changing the device which is always attached to her. It sounded pretty scary. Basically when you unattach her, the blood flow stops until she is changed to a new one. Then when you start that one up it gives a “bump” feeling in the beginning when it starts up. There is so much for her and my brother to learn!
She is not back on the transplant list yet as it has only been two weeks, but I imagine that she will be shortly.
I just can’t believe what one family seems to go through. My brother is very strong and I am so glad that he is such a big support to Auntie A.
Keep up the prayers for them both!!!!
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!!!!
I have been seriously slacking on this blog! Things have still been pretty busy since the wedding and getting the house. A has been doing great since coming home!!! I am now back into working up on his blended diet and so far he is doing great. We really need to try and get some weight on him as his dietician is a little bit concerned. A year ago A weighed 24.7lbs and right now he is 24lbs right on. For some reason he is just not gaining weight and it is beginning to be noticeable. I have added in some flax oil which is great and sausage for his breakfast which is a nice 130calories for a small piece! I was very excited about a week ago when I found a soy nut butter however his body doesn’t seem to agree with it. His last feed of the day ends at about 7:30pm and at 10pm his belly still had way too much food. I cut out the nut butter two days ago and last night his belly was fine. I may try to add it again later but I will wait a little bit. I was hoping he would be okay with it as it is 140cals per tablespoon!
He has been doing wonderful in his therapy and is really enjoying colouring. He insists that he does it on his own however which usually leaves him covered in markers. My independant little man. Physio, well not so great. The last few times when she comes he is NOT happy. Last week he screamed and cried through the entire session and it was actually kind of heartbreaking. I think he is really starting to associate things together. So he knows when he sees his OT and PT that he has to work. As well, when the nurse has come the last two times he goes from being the happy boy he is to the pouty boy who won’t let mommy leave the room. I think he knows that when the nurse comes it is bedtime and boy, this kid does not always want to go to bed! This does make me happy though knowing that this is all part of his great development and understanding!
On another note we were at Mac last week to see my absolute favorite doctor, Rosenbaum. He is growth and development and this man is amazing. He absolutely adores the kiddos that he sees and takes great interest in their lives along with worrying about the parents.
I finally got up the nerve to ask him about the domperidone issue that A had in the NICU. He told me that he was going to talk to two of his friends who are also docs to see what they thought and to see if they would have any info for me. Well he sure does follow up quickly as two days later I had a response. We may be onto something here!