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!
Sixteen years ago today I lost someone who I loved very much. My grandma C. I really can’t believe that it has been that long. WOW, how time flies. There is hardly a day that goes by where I don’t think about her and how much I miss her. How much I wish she was around me. How much I wish that she could be a great grandma to A. How much I wish I could see her hug him, talk to him, just love him. How much I just wish she was still here, period.
I have yet to understand why we seem to lose the great ones that we love too soon. It just really doesn’t seem fair. And it just totally plain sucks because she was so loving, so caring and such a wonderful grandma. I have SO many great memories about her which I am thankful for.
I really truly believe that even though I cannot see her she is here with us. A definitely has his “friends” that make him smile and giggle and I am sure that she is one of them.
I love you grandma.
It was three years ago today that A came home from McMaster after his ICU stay.
It was two years ago today that he came home from hospital after being admitted for high fever, congestion, vomiting and all that fun stuff.
It was a year ago today that he was still inpatient at Sick Kids dealing with an NPT tube.
And today, well he is recovering from pneumonia!
Hmmmm something about him and the number 23. January 23rds and February 23rds. This explains why 23 is one of my lottery numbers. Not that it has been lucky, but I figure it is significant so I might as well!
So I have a few days to update on. Monday and Tuesday night I got to sleep ALL night because Joyce was here! It was kind of a surprise to have her do those shifts, but I more than welcome her here whenever she would like! A was wide awake of course for her so they had a little fun with his computer…
Wednesday A had a very busy day. Grandma was here early and I headed off to a meeting with the social services board. Every year the government gives me money to use to pay workers to come and be with A. It is far from enough money, but hey at least it is something. Anyways, in March I got a letter telling me how much I was approved for and I did not agree so I had to write a letter to fight it. With that fight I got an extra lump sum but still was not happy. So this meeting was with people who didn’t know A’s case and were coming in with an open mind to decide whether or not I was treated fairly in the decision making process. I think it went very well so I will hear within twenty days whether or not I won.
Liz was here to weigh A and I was so surprised that he actually went DOWN in weight!! I have been thinking that he has gained like five pounds in the past three weeks but I was wrong. He is now 22lbs 10oz.
Bonnie his early interventionist was also here to work/play with him. She always brings a lot of neat toys and he is always happy to see new things. She had brought this really neat toy that is easy for him to push. When he does, the toy vibrates and there is a little light that comes on. This is the toy here…
He really needs to do a lot of work with switch toys because when he goes into his electric wheelchair next summer he needs to be familiar with this type of thing. I am happy that his EI is willing to leave toys with us because the price of switch adapted toys is just insane! Not surprising, as everything that is needed for a special needs child is crazy.
Bonnie also brought a little velcro piece that she had came up with to wrap around A’s hand to hold a marker so he can draw. Of course I think he got more on himself than the paper but hey, it was great to see him doing this! He is such an amazing little guy.
Wednesday night in this household was NOT fun. A did not sleep well at all and was very unsettled and not happy. It was one of those nights where it was pointless for me to even attempt to go to bed.
Thursday all day he was not well either. He didn’t have a temp which was good but it is so hard when I don’t know what is wrong. I had him sitting in his bouncy chair and was getting some laundry together and noticed that the side port on his tube was open while his feed was running. When I went to close it I realized that he had a ton of bile pouring out of his tube! I know when this is going on that it is usually his tummy that is not good. I diluted his formula half and half, gave him some tylenol and put some numbing cream on his gums. The poor kid is cutting six teeth right now, three of which are molars! (You can also see two others that will be coming through shortly.)
So yesterday I didn’t get much done. He wanted to be held at all times and if he saw me walking away he would fuss. After hours and hours of this he finally fell asleep and I was able to lay him on the couch without him waking up. He slept a good couple of hours and when he woke up he was fine! AHH what a kid!
Today was a good day. Dawn his PSW was here from 2-5pm but he decided that he wanted to sleep almost that whole time. I also had a new worker come over today so we could talk. Her name is Shelly and she is great! I am so excited to be having her come to work with A. She has been working with one of my moms students now for nine years and I know that if this mom is “approving” of her that I will have no issues. It is so nice to feel that I can trust some people with A!!!
So the weather around here the past couple of days has just been WAY too hot and humid! I am really not a heat person and I am not looking forward to the summer if the past couple of days are any indication to what lies ahead!
Yesterday A had some physio with Monique and did very well. She is impressed with his head control and his sitting with assistance. It is so difficult for me to really notice the progress so it is nice to hear it from those who don’t see him that often. We talked about doing physio now every week instead of every second week. I am happy with this because I feel that he has needed it once a week for a long time. And Monique is really great with him and works him how he should be worked. She definitely takes her job seriously and I am lucky to have her as his physiotherapist.
After therapy I decided to pack him up and take him to the Special Olympics that were happening in Guelph. Grandma was volunteering so she met us across the street. WOW, I could not believe the amount of people there! I don’t think I was really expecting what I saw happening. It was so great to see all of these kids out there having fun! I felt myself having to hold back tears a few times. Seeing things like this really makes me think about A’s future. It is so hard not knowing what he is going to be capable of in life.
Anyhow, here are some great pictures!
This is Monique and her brother with A. My mom used to work with Monique a few years back and wow has she ever grown!
This is Sean with A. My mom has worked with him for a long time. He is a total sweetheart and from the very first time meeting him he always brings a smile to my face. He has cerebral palsy as well.
This is Mady, another student of my moms. She is eleven years old and has athetoid cerebral palsy, the same type that A is said to have. I met with her mom a while back when I first got A’s diagnosis of cerebral palsy. It was nice to be able to talk to someone who has been through it already.
Mady makes me think a lot about what A will and will not be able to do seeing that she has athetoid cerebral palsy. Her mom said that she used to do what A does now as well and it wasn’t until time went on that they realized how much she wasn’t able to do.
Mady and A playing frisbee!
Well I thought I would do a post before we head out for Toronto! A is getting his MRI and CT scans done tomorrow. The MRI is for the cochlear implant (the last step before we find out whether or not he is a candidate!) The CT scan is for his doctors in London. We arranged for them to be done together so that he wouldn’t have to be put under twice.
Today A’s early interventionist was here. It has been a LONG time since we have seen her as she was off sick. She is absolutely amazing with him and you really know that her heart is in her job! She comes to play with him and help him with different toys and such. Well today she helped him draw a picture!!! I once again had a moment where I could feel the tears well up in my eyes. Amazing how such small things mean so much!
Grandma was here too today and A had some fun with her today!
Anyhow, I am off and can feel the butterflies in my stomach already about tomorrow!
So we had a great time the other night at the stag and doe in Stratford. We went over to J’s cousins place when we got there to have a couple of drinks before heading out for the night. Here are some pics that I took…
Aunt K…don’t ask!
We got back to Guelph yesterday afternoon about 3pm. A was awake sitting in the middle of grandma and grandpa’s floor in his bouncy chair as everyone worked around him. (They are redoing their great room.) He wasn’t up for long before he went down for a HUGE nap! He didn’t get up until 11am for them either!! We all had dinner together before we headed home to get some much needed sleep. Well for my much needed sleep!
Today was a crazy day around here. Grandma was here for 10am, Liz and Monica were here at 1pm and Dawn was here for 2pm. A is back to gaining good weight and is now 22lbs 5oz. Monica did a little bit of work with him and I told her today my frustrations with people coming here that are supposed to work with him that don’t. I just feel that it is a waste of my time and A’s for them to come and do a couple silly little things with him. Therapy is to work the child and help them strengthen muscles. The work that my mom and I do with A is MUCH more valuable to him than what she gets paid to do. So I am hoping that next time she is going to step up or of course I am just not going to have her come anymore.
Here are some great shots that I took of A today. I LOVE LOVE LOVE the first one!
Well the weekend went well around here. A was doing well and getting back into his old routine of sleeping at a regular time, having good naps and smiling like crazy! However all of the fun ended yesterday afternoon. He was asleep on the floor and when he woke up I went to pick him up. I had just moved over the IV pole that holds his pump and feeding bags so that it wasn’t in my way. Well as soon as I picked him up he let out an awful scream and I felt a little bit of resistance. I had pulled his feeding tube right out! I was so upset and felt so awful for doing it! He was not very happy to say the least and I had to just hold him and get him to settle down. When I was able to put him down for a minute I had to put the tube back in a little bit and tape it up really well. With it being a bigger tube than he had ever had in the past, there was TONS of bile leaking out of the holes that are along the tube. So I had to bend it over and over and tape it up like that as well.
I called McMaster to see who the GI was on call, and thank goodness it was Dr. Sant’Anna. It is always nice when I deal with an on call doctor that is A’s. She told me that it was Sunday so it wouldn’t be done until Monday. I knew this before I called but I wasn’t sure what to do. She had said the emergency department was packed and full of sick people so she said if I could manage with A to just stay home and bring him for today. Normally when something like this happens, the child is admitted and they put in an IV to give them fluids. However, A is done his RSV shots and I wasn’t taking the chance of him catching some nasty bug from being admitted.
I went over to my parents last night to have dinner with Uncle S and Andrea. My parents came home shortly after I got there from the cabin. A seemed to be doing okay so I wasn’t too worried about it.
When I got home with him I handed him off to daddy and got his med ready for his reflux. Of course I didn’t think that he would take it as he never has in the past. To my surprise he took it all and wanted more! So I got the bottle out and some sugar water. He was going nuts. After about ten minutes we realized that he wasn’t getting anything out of it anyways so I tried a different nipple. Well he would get too much and start choking so that didn’t last long.
Last night when I put him to bed he was so tired he fell right to sleep. It was probably around 11pm. Well at around 12:30am he was fussy and wanted his soother. He was acting VERY agitated so I just thought that maybe he was feeling hungry. Although for a child who has never felt hunger I don’t know that he would have put the two together. I didn’t get much sleep last night as he was up and down all night. This morning J went to work just before 7am. I got up because A was moving all around and the minute I touched him I knew he had a fever. He was boiling! So I picked him up and brought him into my bed. That is when I noticed how dry his mouth was. His lips were even all cracked. I grabbed the syringe and some water and he just wanted more and more. I think he took about 100ml within ten minutes! I was very impressed but at the same time worried that he would throw up. That is what usually happens when he has any water or fluid by mouth. However he didn’t.
I took his temperature and it was 104. Now I know that fever is a good thing because it means that the body is fighting infection but I was very nervous. I thought that it might of meant that he had something going on in his gut from the tube coming out. Of course some of the problems that can happen with that are life threatening so when my mind starts going I get even more nervous. I gave him some advil and kept giving him water.
Grandma was here for just after 9am and we headed to Hamilton. By this time I think A had about 150mls of water. The whole car ride he just wanted more water. Grandma couldn’t give it to him fast enough!
I was very pleased with my experience at Mac this time. Can you believe it?! I almost can’t! Not ONCE have I ever had a good experience when I take A there. This time right from the start it was good. We didn’t have to wait at all to go in and the doctor that did the tube was excellent. The other technician that was there was also wonderful. I swear he had the new tube done in about four minutes! I have NEVER had anyone do it that quickly!
So we left there and headed up to NICU to see Dr.Shah. He did come out but not for long because he said it was crazy in there today. I also saw Bonnie, and I haven’t seen her since we left the NICU. She came up to me and gave me a great big hug and couldn’t believe her eyes when she saw A. It was really nice. I didn’t get to get any pictures though because she was on her way to labor and delivery.
When we got back home with A I checked his temperature and it was the same as this morning. He had two doses of advil and it hadn’t come down at all. So I called the ped and he said to just bring him in. Grandma left to head back to work and I took A to the doc. Of course by the time that I got there he was so exhausted that he was really just laying there not doing anything. His chest also sounded good which was the opposite of today. He sounded so full and wheezy all day. Of course with his high fever he didn’t want to leave him without antibiotics. I thought for sure that he would admit A but he didn’t want him in a germ infested hospital either. So he said to try the antibiotic and if the fever doesn’t come down he needs to see him again.
So as of right now his temperature is STILL the same. He just had a shower with daddy and I and he was not happy. That really tells us that he is NOT feeling well when he doesn’t like the water. This kid is a fish normally!
And for the most exciting news of all. A HAS NOT VOMITED ONCE SINCE THE TUBE CAME OUT YESTERDAY! HE HAS GONE OVER 24 HOURS WITH NO VOMIT! I CAN HARDLY BELIEVE! Now I shouldn’t be saying any of this because I might jinx it, but I have been saying this entire time that I thought it was the tube. No one would listen. It couldn’t be the tube…it wouldn’t be the tube….hmmmm we’ll just have to see! Everyone keep their fingers crossed!
Well my pictures aren’t working so I will post them tomorrow….