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???
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 I happy to report that so far not having any workers/therapists coming in has been great. I wasn’t sure how A would react as he can get bored pretty quick with mommy. It has been nice so far not having to check my calander every single morning to see who is coming and at what time.
I received a call yesterday from my case manager about cancelling services and I really think that people JUST DON’T GET IT. I am doing this to protect A from getting H1N1 as best I can. I am not doing it just because I want to. I feel bad that he isn’t having the people come in that normally just come to play but I have to do what I have to do as his mom.
I look at how sick A was just this past little while and knowing that I was very afraid we were close to ending up in the ICU again over really just a “cold” I can’t even imagine what the H1N1 would do to him.
By the way, so much for me thinking I would be able to sleep the other night after getting my shot! WOW, my arm hurt so bad that I was not even able to sleep that night. It was absolutely crazy! Yesterday evening I started to feel “achy” all over as well and didn’t feel so hot however I did read that it is possible to get some flu like symptoms after receving this H1N1 vaccine.
I am off tonight with my good friend to go see the Michael Jackson tribute. Time for daddy and A to spend some good quality time together! Yep I am braving the crowds and we’ll see how I do. This H1N1 has been driving me insane because I am so nervous!
Yay I can finally sleep tonight! The past two nights for me have been awful because I am so darn nervous about this H1N1 flu going around. When daddy got done work today A and I went to pick him up so we could just head right over to the clinic. Grandma C met us over there too so that she could get hers.
The line up was absolutely INSANE to say the least. A lady out the front of the clinic told me the wait was almost four hours!! It started inside the school where you would get your paperwork done and went all of the way outside. When we got there I went over to the one guy working the line and told him that we could not wait in a 3.5 hour line with A. He came over to A and said he would be right back. We then were taken all the way to the front of the line so we could get in and then out. Awesome!!!
So needless to say I feel much better knowing that it is done and over with. Now we just wait the required two weeks until it is effective.
I called A’s one company that sends me his PSWs on Monday and Friday and left a message saying that I was suspending all of his services until he was fully covered for the H1N1. Late this afternoon they called me back and left a message saying “as long as he hasn’t had a fever for five days then the workers can come back in.” What??? I don’t think they listened very well to my message and instead think that A has H1N1.
Anyways, yesterday we had a visit from Grandma S for the day. A was a big show off in his stander for her and he did such an amazing job at holding his head up. At one point daddy had the stander straight up and he held that head up for a good fifteen minutes!
He is not liking being placed in the stander but as soon as he is up and standing he is great. I think it is because he HATES to be held down and I really have to hold his legs down tight to get the straps done up in front of his knees. Just a feeling that he isn’t used to and doesn’t like. His PT said that he would probably only do about fifteen minutes at a time without complaining but he is doing MUCH longer than that each time! I think yesterday he spent about one and a half hours standing up. Gives him a whole new view of the world really when you think about it. Such a nice change to be upright instead of sitting in his chair or laying on the floor! Go little man!!!!
This child just LOVES his daddy!!!!
Well we headed out to Mac yesterday so A could get his first H1N1 vaccine. He will need to get a second one in about three weeks and then immunity is not until two weeks after that. That means approximately the middle of December.
I have decided to suspend A’s services that he gets with the community until that time. And as well, anyone who comes in here that does NOT get the vaccine will not be allowed to visit. This has been a huge decision for me but with how sick he was two weeks ago I do not want to risk him getting H1N1 at all if I can.
So looks like A and mommy will be having a lot of time here by themselves. Gets him out of therapy for a while too! Should be a nice little break.
I went to the clinic here in town with J last night but unfortunately the police had shut it down because there were so many people there to get it. I thought I was going to cry because this is something that I really really want to avoid at all costs. I will be trying to call my doctor on Monday and see if there is any way he can get if for J and I.
When we got home yesterday a lady from Motion brought a stander for A to try out. He looks GREAT in it and I think he really loves it. We have not tried a stander with him for probably three years now. Back then he wasn’t too keen on the standing at all which is why we never did order one. But anyone that is around A knows that he loves to stand up now so this will be good for him.
We haven’t had many kids for Halloween tonight compared to last year. Here is my little man in his costume:
Carving his pumpkin with daddy….
Being silly earlier tonight…check out the shirt daddy got him at the concert the other night!