Well A is now 5 years old. We celebrated on the 13th with so many people! And thankfully the rain held off and it was a good day to be outside. I was really excited that his little girlfriend was able to make it. She has not been able to come to one of his birthdays yet as she was usually not well enough to attend. A big thanks to everyone who came out and made the day so special!
***Pics will be within the next couple days…still organizing***
In some SUPER DUPER exciting news about A….he has finally gained weight!!! Yep, you read that right. He is no longer the 25lbs that he has been since pretty much December of 2007.
After we received his biopsy results in April, I had told his dietician that IF they were negative I was going to a blended diet. Well guess what? The biopsies were negative so on April 30th I started him on just blended food. NO formula at all.
I had done the blended diet in the past, but I always used formula as the base for it. I could never understand why he still didn’t gain and on the blended diet group he seemed to be the only one still having issues. Well some great people there told me that they didn’t see a difference until they got rid of the formula completely.
So April 29th was his last day of that junk.
A is doing AMAZING on the blended diet. He gets rice milk, blueberries, green beans, peas, avocado, honey, half and half cream, whipping cream, hemp seeds, almond nut butter, applesauce, orange juice, yogurt, chicken or beef, oatmeal, ancient grain cereal, eggs….pretty much whatever works.
When he was on formula, the quickest that he could take food on his pump was at a rate of 160mls/hour. Now on the BD he can take 280mls/hour. I still can’t believe it.
So I assume you want to know his weight right?! Well the other morning he weighed in at 29lbs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I NEVER thought this child would grow!
And to make this BD even more exciting, I have now gone down on his prevacid to a dose that he has not been on since he was a year old! He is on 15mg right now and hopefully I will be able to take him off it completely soon. This child has NEVER not been on a reflux medication so this would be great in itself!
Some other great A news. He is now doing things that he has not done or didn’t do as much. In the past he used to roll over maybe a few times a month but it never seemed purposeful. Well he is a rolling machine. AT LEAST give times a day! He is also learning with his PT and OT to be in a position on all fours and doing most of the work himself. Yes, thank you again tracheostomy! 🙂
In some not so exciting news, school. I again was at the school last week to meet with everyone involved. It was the first meeting at the school that he will be going to. The principal absolutely rocks and I love that he is so genuine about wanting to have A at his school.
Every meeting goes fine until we get to the nursing issue. I hate hate hate the fact that he even has to have a nurse with him at school. But because of the trach we do not have a choice. However all of you know that have spent so much time in hospital that just because you are a nurse doesn’t really mean much.
Sure, when you are new to the hospital system you usually think of a nurse as a nurse. Well not me. I have had SO many issues with nurses over the years that I have learned that you can have the schooling but it doesn’t mean that you should be allowed to be a nurse.
Well my nursing agency just seems to make this really difficult for me. I am not getting the nurse that I requested (after they were all for it), but instead they have gone and hired a nurse that she thinks will be wonderful. My view….I will believe it when I see it.
So once I got over the fact that she had hired a nurse specifically for A I asked when they would be starting. I really think that anyone that is going to be working with A without me around needs A LOT of time to get to know him. He is not an easy child to get to know and he can make things difficult.
I was told that the nurse could do Monday, Wednesday and Fridays for six hour shifts. Starting end of July. This would go until October when he would then be entering the school system. Okay, perfect.
Well two days later I get a call from my case manager. She never approved that. And in the big picture, she can’t.
I am sorry, but what the hell is this nursing agency thinking?! This is just not okay. You should not tell a parent something until you know that it is something that is going to work FOR SURE.
This lady I deal with does not impress me at all. Has not impressed me since the night I met her. (See, I do read people well!) So needless to say I called to ask her what the heck to do. One month is NOT long enough at all for a nurse to come in here and learn to be with A. “But she is an RN”……for crying out loud, THAT MEANS NOTHING!!!!!!!!!! Anyone can go to school and get “training” but that doesn’t mean when you come to do it on an actual person that it is easy! And especially with a child that has such severe cyanotic episodes.
Anyways, I am thrilled beyond belief to say this. We met his school nurse the other night and she is perfect! I have been VERY good with feeling people out and I knew the minute I saw her that this would be a great thing! She really reminds me of Ashton’s primary nurse from the NICU which is kinda funny but I am just soooo excited about this!!!!!
She just finished nursing school last May and is currently working in our home hospital on the surgical floor. However she just did a mission trip and realized when she came back that she wants to work with children. When she saw the ad for a school nurse needed for a child with special needs she applied right away.
The young thing really freaked me out at first but then I got thinking. The young ones are still learning. They are not set in their ways. And I think will be more fun for A.
She has never worked with a child with special needs, let alone one that has a feeding tube and a trach. She will be doing her trach training with A’s RT on July 8th and hopefully will start coming here on the 26th of July. We just have to figure out the private nursing thing.
I was very clear with her about what we want and what we don’t want. I don’t want a perfectionist. I don’t want a nurse that is TOTALLY by the book. I don’t want a nurse that is all about his medical needs and so focused on them that she cannot enjoy him.
Anyhow, I think this is going to be just great!!!!!!!!!!!!! She definitely has a lot to learn with A but she did say before she left that she is very excited to do her training, to learn about A’s history and get to know him. I just know she is going to fall in love with my little guy and they will be a great team.
Well it has been a very long day! Grandpa was here this morning to pick us up to head to Sick Kids at 6am. Of course we did really good with traffic and we were there at 7:40am! Better to sit and have coffee than to be sitting in stop and go traffic!
The doctor took us a bit early and took out A’s stitch. He wasn’t too happy but it was quick and I am sure that he forgot about it pretty fast. It is funny how things like that bother me (I held his head but I could not watch) but yet if it was another kid it wouldn’t have phased me.
We have also got the activation date now too! JULY 9th! WOO HOO I am so excited! Make sure you check back that day for sure!!!!
We were in the truck and out of the parking lot before 9am which was his appointment time! I bet we will never beat that record again.
After getting back into town we stopped to see grandma. A was tired so grandpa went to work and I laid down with A to have a nap. Both of us were very tired from having another night of no sleep and being out of the house by 6am. We ended up having a couple of hours but with a lot of fussing. I really don’t know what is going on lately with A and his sleeping. It really is like when we first brought him home.
Speaking of sleep, I got some bad news today. Joyce will no longer be coming here to do nursing. SOOOO that means no help with A at night for a long time. I am currently trying to find another night nurse but it is difficult because the agency that I deal with has a hard time finding nurses that want to do the nights. I hope that Joyce stays in touch because she has been a HUGE part of our lives and has been so great to A. I always feared this day as I have a hard time “letting go” of people that have come into our lives since Ashton was born. So thank you Joyce for coming here for this past year and helping us out! And thank you for being so great to A since he was a little tiny guy….and PLEASE stay in touch and feel free to come and do a shift here and there if you want!
A couple pictures from tonight of A….and that little baby bee that is on him was almost the same exact size of him when he was born! He was actually an inch and a half longer than the doll and his head was one inch larger. CRAZY!!! I don’t remember him EVER being that small! Funny how as time goes on you just lose sight of some things. They used to always tell me in the NICU that one day we would look back and it would be a blur and I never believed them. Now I know they were right.
So I thought I would catch up on a few pics and stuff for today. I will start with the good pictures 🙂
First things first I guess! A very happy birthday to Olivia and Avery who turned 2 years old today!! They were born at Mac as well. Yay, birthday party tomorrow!
I want to thank everyone that came to A’s birthday party again. It meant so much to have all of you there to celebrate the day with us! Here are some more pics from that day.
I have to start with Alina. Her mom sent me this picture since she was not able to come and she is SO sweet!
Thanks Vickie for those pictures!!
I got a great call today from one of my workers that I have for social services. She handles all of the money that I am allowed for each year to provide respite care for A. Well she had some extra money around and it can be used for camp for children with special needs. However A is not quite old enough for camp so she thought that maybe he would enjoy music therapy and it would pay for that! I am looking forward to the information that she will be sending to me about this therapy. I think it will be wonderful for A to do and I am sure that he will enjoy it.
Now for some not so nice pictures. On Wednesday morning when I got back to A after having a little sleep down in the constant care room I noticed a bruise on the front of his leg. I didn’t really think much of it until later on when I turned him over to sleep (he likes to sleep on his belly). Then I noticed three more bruises around the back. After a couple of minutes of searching him up and down I realized that the marks looked like a hand. I called the nurse that was on over and showed her and she didn’t really say much.
Wednesday night when we got home I showed J and asked him what it looked like to him. He said the same thing. A hand.
This is very upsetting to me because these nurses at Sick Kids are supposed to be part of an amazing hospital with many professionals. I don’t know what happened exactly but I can assume that someone was frustrated with him and grabbed him around his leg. That Tuesday night when I went down to sleep he was VERY irritable and not comfortable at all. I was VERY irritable with the nurses because they would not give him any more pain meds and it was very obvious that he needed them. I eventually just told his nurse that I needed to go and get some sleep so that I could come back a bit more sane. Hmmm maybe I should have just stayed.
On any note, the pictures are not the greatest and were not taken until Thursday here at home so the bruises were fading. Pretty sad isn’t it?
This day brings back a lot of emotions and memories for me. It was 14 years ago today that my grandma passed away. She was a big part of my life and I will always remember and think of her. I was with her when she passed and that day still seems so recent to me. We were bringing her back on air ambulance and I remember just watching her breathing. I think I knew before the nurse did that she had passed. It was one of the hardest things I have had to deal with in my life but I know that she is in a better place. I really wish that she could be here with us today but for some reason she was taken from all of us way too soon. I know that she would be very proud of me and how I am dealing with things in my life. I also know that she would be a very proud and amazing great grandma to A. But at least I can say that I KNOW she is one of the angels that watches over him….
It was one year ago today that my little man came home to stay from the hospital! I cannot believe that a year has gone by already. He came home weighing 9lbs5oz and is now 20lbs! Here is him one year ago leaving the hospital…
And here is him tonight with his daddy…
So as you can gather from the pictures he is home. Long story short, they never know what is going on with him and I find it pointless for him to sit in a hospital that is full of germs and many other things that I don’t want him catching. If they aren’t going to do anything then he might as well be home.
I have to say that our experience again this time at Guelph was good. Taking him into a packed emergency room was nerve racking for me but once we did the whole triage ordeal they just took us right back. I still cannot believe how good they are about realizing how susceptible he is and then Mac who deals with preemies makes us sit outside on the curb with him!
So anyhow, the nurses in the ER and the doctor were also all great. Very friendly, kind and caring. The nurses up on the ped floor were also wonderful. And of course A’s doctor, Promnitz is also wonderful.
I got a great nights sleep thanks to Joyce coming up to the hospital and staying with A. I returned this morning at 7:30am and was happy to see that A was more like himself. Little did I know that he didn’t have a good night at all. Joyce said his movements were crazy and he was very unsettled. She held him to try and get him to sleep and within six minutes (she was timing) he jumped sixteen times. He had also vomited some more formula that she said was partially digested. Ugh I was so frustrated!
After Joyce left at 8am A threw up formula two more times. However I was just told once again that it is viral. What I can’t seem to get through their heads is that Ashton has NEVER thrown up formula in the year that he has had his gj tube. It is impossible to be “normal” when the tube goes past his stomach and into his jejunum! As well, A has had a few viral infections before now and it is just bile that he usually vomits. But what do I know? I’m just the mom who spends 24/7 with this kid….
I decided that since A no longer had a fever, seemed pretty much normal to me and no one listening that I would just bring him home. He threw up formula one more time since coming home and has had three loose poops. I called his GI team and left a message that they need to call me ASAP to get him in. They need to figure out what is going on.
So thank you everyone for all your thoughts and well wishes. And Lisa, thank you! That is the second time in one month that you made me cry!
I really wish that I wasn’t the one making all of the decisions when it comes to A! It would be so nice to find a doctor that could just figure things out. If anyone that reads this has any ideas let me know! At this point I am almost willing to take him anywhere to any doctor!
So that is it for February 23rd. I love you grandma! And A, don’t make this your way of celebrating your homecoming!
Well A did good overnight considering his tube was hanging in there by a thread. He was up at about 7:30am and Joyce left at 8am. He ended up going back to sleep at about 8:30am until just after 10am. I had talked to his GI doctor this morning and she told me that she would call me when she got into work and let me know what time to bring A in to have his tube changed. So around 9am she calls and tells me that she talked to radiology and they said that it could be today or tomorrow that they would do it. She said she stressed how important it is for him because that is his only means of feeding and that it should be done today.
Anyhow I was a little frustrated when getting off of the phone with her. I just cannot believe how the hospital doesn’t see putting a tube in to be an emergency. Well to my surprise they called and after a bit of a fuss they said to have him there for 12pm sharp. So I pack A up and head out to Mac. I am there about 11:45 so as not to be late and guess what time they call us in?!? 1:15pm!! Does that seem like 12pm sharp? Nope doesn’t to me either!
So finally we get into the room and the doctor decides that he is going to put a size 8.5 tube in and A has always had a 5. So almost double. After discussing it with him a little bit I agree to do it. So in goes the new tube. I can tell by the way he is talking to the nurse and looking at the screen that something isn’t right. So I lean over and peek. After seeing this done plenty of times I can tell exactly what I am looking at. I say that there looks to be some of the dye going into the stomach and that A can’t have anything in his stomach. And besides if the tube is turned up to face the stomach it is kind of pointless anyways. So after a bit of manipulating of the tube he says it is fine. Clean up and off we go.
I go upstairs to see his GI doctor who is absolutely wonderful by the way! I thought that A’s tube was infected so she wanted to peak at it, but said that it was okay. So after talking to her a bit about things A and I headed up to the NICU. And yay to our surprise Danielle was on! I got two pictures of her and Julie with A. Julie was A’s OT in the NICU and did great with him.
So after some visiting there I went to see A’s favorite neonatologist but he wasn’t in his office so I just left to go and start A’s feed up. After doing my normal routine with the feed bag and pump I start it up. And I hear this huge POP and see that the feeding tube has come right out of his extension tube. To make things worse formula is coming out of it like crazy! So I clamp his extension and then checked it again. Opened it up and more formula starts coming out along with bile. I freaked!
So back upstairs I go to GI. They send me to radiology AGAIN!! Ahhh by this point it is 4pm! I am sitting in the waiting area with A and hear a nurse say “oh here they are” and I looked up. And to my shock it was the same nurse as a time before when A had his tube changed. She was an absolute ***** last time to me (my dad can vouch this) and made me feel like crap! Right away she is questioning me and telling me that I am not doing this/that right! I told her after about one minute of her rambling that I didn’t want to deal with her so she could send someone else. The other nurse was wonderful.
Back into the radiology room we go. And in walks the ***** with the doctor. He checks the tube and says that it is fine. Then of course she starts telling me that I need to get someone to show me how to use the pump and blah blah blah. Give me a break!!! A has been on the feeding pump since coming home, I think I know how to use it! So then she wants me to start the feed so they can see what happens. So I connect it and start it. She comes over, points to his pump and says, “you aren’t even running it, it’s on hold!” Duh!!! It said hold because IT WAS running and if you WANT to hold it THEN you push it! So basically, it just proved to me that this was yet ANOTHER thing she didn’t know a thing about. If you don’t know something then don’t pretend you do! I thought I was going to cry, and it really wasn’t fair that she was treating me like a bag of **** when I do everything I can for this child.
ANYWAYS!!!!!!! Enough of that. I went to grandma and grandpas after the appointment and we ordered pizza. I picked up daddy and then we ate dinner and came home. Joyce is here again tonight. I am starting to get a cold yet again. So off to bed I go…
Just a few pictures of A tonight at grandma and grandpa’s. He loves this little toy and you can see him really trying. And yes he is holding it!!!