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 another week has come to an end with no therapies or care workers for A. I have to say that I am quite enjoying it! Not getting A up out of bed in the morning so he is ready for them. Not having to rush out the door to get somewhere on time. Just being able to live life “normally” and do as we please.
We still have ten days until A gets his second dose of H1N1 so we are still pretty much in “hibernation” as to not expose him to any of those sick people who still think it is okay to go out into public places and pass on their germs.
Sunday we went down to Toronto to visit with Auntie A. We had not seen her since two days after her LVAD was placed. When we walked up the street to the hospital, she was sitting outside with Uncle S and grandma and grandpa C. She looked MUCH better than the last time that I had seen her. Every time she looks better. We walked around the hospital with her, which by the way is a fair distance for somebody who has just gone through what she has!
Grandma and grandpa C left and then we headed to go have dinner at Swiss Chalet. It was just across the street, so not too far. It is pretty scary leaving the “safety zone” of the hospital with all the gear that Auntie A now has. Uncle S also has a backpack that he wears with spare batteries for the LVAD if needed.
Monday A and I headed to Waterloo to see the amazing Dr. Wiggins again. He is an eye specialist that works with special needs kids. I am always super excited to go and see him with A.
So A has kinda confused another doctor. EVERY time that we have gone to see Dr. Wiggins, A’s acuity -sharpness, clarity in vision- he is at 20/200. Now of course with kids like A you cannot get them to read off the chart that we would. So they use these cards that have a picture on the top or the bottom of the card. The cards are grey and have an outline of say a duck on the top or bottom in white. They show them to A quickly and see if he looks in the right place for the picture. Once he stops, they know he is not seeing it.
So, like I was saying, normally he is 20/200 for his vision. The easiest way to explain this vision is that he can see only at 20 feet what a normal person can see at 200 feet. There are some complicated physics and optics to further explain it but this is the bottom line. 20/200 vision in each eye is the definition of legal blindness.
Well Monday he decided to show his acuity at 20/50! So this means that A has almost good enough vision to drive-as per Dr. Wiggins! haha Needless to say I was VERY confused by this. There is no real way to explain it though I guess as A cannot tell us what he is seeing and how. We will see Dr. Wiggins again in six months and see how A does then.
A still does have the problem with only using one eye at a time to see and his right eye really wanders. We spoke about surgery, however like he said, it is really only cosmetic at this point so that other people wouldn’t notice it. Sorry, no surgery for this boy to make him look better “cosmetically!” In my eyes he is perfect the way he is. And honestly I don’t think many even notice his eye wandering. I know even his dad doesn’t see what I am talking about!
Today my little man trialed the Kidwalk Gait Trainer.His PT was not a huge fan of it but I however really would like A to learn to use something like this to give him more freedom and ability to do things on his own. I have to tell you, that he LOVED it despite the fact that there are a few things that would have to be custom done for him to use it properly. I was amazed today looking at him in it, because it isn’t like a stander where you can tilt it back a bit. It is pretty much straight up so he really has to hold his head back. And he did this just fine!!! It has a bouncy mechanism on it so if he jumps he will go up and down. This is absolutely loved as well since this is something he likes to do when you hold him standing up.
After the sales rep and his PT left I decided to take him outside in it to see how he did. Daddy had just pulled in the driveway and as soon as he saw A moving in the walker he said “right on.” I think we both thought we were going to start crying. A was just as happy as could be in it because he definitely knew that HE was doing all of the work. We walked down to the mailbox to get the mail and back. I think this is something that he could really get the hang of and use it for his advantage.
It is supposed to be a gorgeous day tomorrow so we may just be out and about again! By the way, that first picture is when I opened the door to go outside….he was AMAZED. Nothing like seeing the world in a whole new way at 4.5 years old!
As for Auntie A news, she came home tonight! I talked to her not long ago and she was happy to be home. It has been a LONG 39 days for her being in hospital, and WOW what she has been through! Keep up all the prayers for her…she still has a very long road ahead of her but has proved every single day that she is up for the challenge!
Well this is now A’s new website. It is a work in progress so be patient with me. I have a web designer working on it for me as well. As you all know, I would really appreciate if you do NOT add this to your blog list. There are reasons I had to go private before and I just don’t want certain people finding this new site. That is why we are now referring to my boy as “A”. So if you have A on your blog list, just leave his old address listed as I do not want this listed anywhere. SO PLEASE DO NOT HAVE THIS AS A LINK ON YOUR PAGE!!!! Thanks everyone!
So it has been kind of crazy around here once again. On October 16th my little man was really struggling in the morning. So much that I really thought that he was possibly heading into respiratory failure again as he did he March. By lunch time I was nervous so I took him into his doctor. I was so positive that we were going to be admitted that I packed all of my bags and A’s bags before heading. He was requiring oxygen at times and was struggling to breathe.
So we got him into the doctor and he was NOT concerned about him! He said that his throat was kind of red and irritated so he placed him on an antibiotic to be safe and then sent us for an x-ray.
Saturday morning (the 17th) his doctor called to tell me that his x-ray actually looked pretty good. I couldn’t believe it. Friday night was HORRIBLE. A had to sleep in his chair and every time that he fell asleep his sats would drop to the 70s and stay there. If I woke him up he was above 90. I cried and cried because I felt really bad for him suffering, but I didn’t know what else to do for him. I told his doctor that I was really angry and that I felt something more was going on. He told me if I was that worried about A that I should take him to the ER. Ummm that is why I brought him to see YOU, so we could avoid the ER!
Anyhow, on Tuesday the 20th we had an appointment anyways with his respirologist at Mac that I absolutely LOVE. It is the vent clinic that A is now under even though he isn’t trached.
We did a cap gas first which showed that his CO2 was at 54 and his O2 at 75. He was very junky and had needed a lot of suctioning over the weekend. They did swabs for viruses and then his swab to check for pseudomonas.
He wondered why A was on the antibiotic that he was on and stressed that when it comes to A that doctors really need to be more aggressive. He has very crappy lungs and anything can happen. So he placed him on cipro (in case the pseudomonas was active) and on prednisone as well as many extra breathing treatments.
I felt MUCH better walking out of there because I feel like this doctor is so PRO active with A. It is about time that someone really cares for this kid and his well being!
So A and I spent just over a week sleeping on the couch together and trying to keep him out of hospital. As of today, he is doing wonderful!
On another note, I really need people to send lots of love and prayers to Auntie A (my sister in law), my brother and her family and friends. As most of you know, about 18 months ago she was diagnosed with cardiomyopathy with a heart function of 20%. She has stayed so positive and strong that it is just amazing!
Well for about the past three months she has been telling her cardiologist that she has severe stomach pain, is nauseous 24/7 and cannot eat. He told her that it was probably her GI issues/gallbladder. Twice she almost had her gallbladder removed which would have been for NO reason.
Long story short, she ended up in hospital on the 5th of October after going to a class for people with heart conditions. There was a pamphlet given out with symptoms of heart failure. She had them. These were what she had been complaining about to her doctor for months. It was then she found out that she was in severe congestive heart failure.
October 12th she was transferred to Toronto General. It was there that she started to really rapidly decline. Last week she was officially listed for a heart transplant. However with her poor days they just couldn’t let her go as she was.
On Friday October 23rd she had a code blue called. I went and saw her on Saturday and she was HORRIBLE. I couldn’t believe how much she had deteriorated since I saw her last which was only four days prior.
Sunday it was decided that she needed to have the LVAD (left ventricular assist device) placed. They were hoping to avoid this until this coming Friday because they didn’t want to do the LVAD and a heart transplant as it would be very hard on her. However a heart had not come yet and she could not keep going the way that she was.
I was up at the hospital last night to see her and spend some time with my brother. She was very tired and in a lot of pain. The things this girl has gone through are just incredible. Her fight is inspiring to say the least. Please keep praying for her and all who love her.