First here are some pictures I found on my camera from when grandma and grandpa babysat on the weekend….
Hahahaha I had a good laugh when I saw this one…wonder who put his leg like that?
Well today was my birthday and what a day! Last night around 8pm A started to act very strange. It was so weird that even daddy noticed and we were both pretty concerned. He would go very pale and then you could tell that he was refluxing. Next he would go very off colour and then the vomiting started. The first two times were just clear and the third was a huge amount of bile.
By 10pm I was starting to get pretty worked up about how he was acting. I have a very strong instinct when it comes to A and I knew that something was going on. I still don’t know what last night was all about, but I hope I don’t see it again!
Anyways I decided to kick daddy out to sleep on the couch last night. I had laid A in his bed and right away he threw up. With him being sick and acting odd I really wanted to keep a close eye so he slept in bed with me last night. From 11pm until this morning at 8am he had vomited a total of probably 15-20 times. Every single time it was a ton of formula as well which had me pretty concerned. I have to say that he still slept pretty well though considering. He would start fussing and then I could hear his belly gurgling and then he would vomit and go back to sleep.
This morning I had a ton of laundry to do to say the least and things just went downhill. At 9am he normally gets a break until 1pm but because I had run his feed at half strength and 18mls/hour less I decided to run pedialyte. He has only vomited twice today and that was when I had tried half strength formula again. So it is now 11pm and he is still just on pedialyte.
The diarrhea started as well today but thankfully his last huge episode of that was at 5pm. At the current moment he is sleeping on the couch and his nurse is here. I am heading off to bed to get a good night sleep!
We still headed over to my parents for dinner and cake tonight and I got some great gifts!
We got the special tomato brought over today to trial to see if it is something we would like to get for him….of course with not feeling well it is hard to tell if he likes it…
A beautiful smile from my sick little man…
Am I ever happy that A’s nurse was here last night! He had a pretty rough night with vomiting bile, a nose full of boogers and just plain irritability! I did hear him at 2am at which point he was up until about 3am. Then from 5am until 7:40am she had to sit in his rocking chair and hold him. By the time she left at 8am he was back asleep so I decided to cancel his physio for today that he was to have at 10am. Good thing I did because he didn’t get up until about 10:15am. He actually doesn’t seem to be that bad right now except for sounding a bit congested. This whole thing brought me to thinking about the RSV shots that he has received for the last two years. I really didn’t think he would qualify this year as he isn’t on oxygen anymore and he hasn’t been hospitalized with pneumonia or anything of the sort. I called his doctor this morning and he is on the list! This is awesome news and can help me relax a little bit!
On Saturday I took A with me to go and meet a photographer that Lisa had recommended to me. I was FINALLY able to walk away knowing that this IS the one that I want there on my wedding day! Her work is absolutely amazing and there isn’t a doubt in my mind that I won’t be extremely happy having her do our pictures. So thanks Lisa for helping me make one of the biggest decisions for my day!
Saturday night we all just settled in and watched a movie. Or should I say tried. LOL A is constantly wanting to go and doesn’t just sit on my lap anymore when I want him to. The happiest place for him is the floor! He loves the freedom of being able to move around and not have any boundaries. However with his feeding tube this is difficult at times to do!
Here he is being the little monkey that he is…
Yesterday was a typical Sunday around here. Just hanging out and not doing much of anything!
Still no word on the MRI from London. I called there on Friday and got ahold of the secretary and she told me that he was in a meeting until 4pm (when they close) but that she would have him call me. Nothing. And still nothing from he respirologist at Mac either.
Well it has been a crazy week around here! A’s tube that he had placed in London just does not want to stay in the spot that they marked it and it is driving me crazy! He has had a lot of vomiting of thick mucus and a couple of times he had projectile bile. Really gross stuff and frustrating when I don’t know why. I can only assume that his gut is irritated from having the new tube placed.
Wedding plans! AHHH I feel like I don’t have enough time to do everything and it is still so far away. The date is set and I have three places that I am looking at next week. My mom and I are also going to a bridal show in September so hopefully I will be able to book the DJ and the photographer then. I am SO excited about this day and I can’t believe still that it is going to happen! J and I have also picked out where we would like to go on our honeymoon so that is just one less thing to worry about. This day has to be absolutely perfect and I know with everyone involved that it will be just that!
So A has been impressing me this week with yet something else that is new. He now will sit in his swing and look at his feet! There was also one night that he was actually trying to get them and it was so obvious my the determination in his face! I was almost jumping up and down as this is a HUGE step if he was to start touching his own feet! I couldn’t catch a picture of it, but here he is in the swing…
Monique his physiotherapist was here the other day and she just cannot believe how well he has done over the summer. He is getting so much stronger with pulling his head forward, holding his head up, standing nicely, sitting nicely (supported) and just everything! She also told me that I am in the 1% of parents that she sees that are totally into their kids, advocating for what I believe is right and the knowledge that I have. So that was a very nice comment from her. I guess it just isn’t something that they see all of the time.
So today I took A to meet Darcy Tucker at the Future Shop that just opened here. For those of you who don’t know who he is, he plays for the Toronto Maple Leafs. I had also written him a letter and wasn’t sure that they would take it, but they did. My mom told him that it was a very special letter from Ashton and he smiled and said okay. We stood in line from about 10:45am until 1:30pm to meet him. It was raining when we first arrived but then it cleared up which was good.
Waiting patiently with grandma…
Smiling at grandpa…
Still waiting patiently, but almost there!
The line moved quickly because he was just signing his name…no pictures with him or anything specific being written…
Looking at A…
Signing A’s hockey stick…
Grandma telling him about the letter…
Grandpa getting another stick for me signed…(my letter is under the sunglasses!)
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!!!
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….
Come morning he was the happy baby he normally is. Grandma was here for 9:30am and she never would have guessed about the night that he had. We took him to the doctors for 10:15am but didn’t get in until about 11am. He was weighed in and was the big 20 pounds! I can hardly believe it! He got his RSV shot and was not a happy camper. I think it bugs me just as much as him. I find it so hard now to watch him go through things like this. Funny when I look back at everything I watched him go through in the NICU and didn’t make me flinch.
I spoke to his doctor about the vomiting and even brought him my list of times and how much was thrown up. He didn’t seem too concerned about it but did say that if he isn’t better by the end of the week to bring him back in. The blood he said is probably from the force of the vomiting and his esophagus is irritated. I however am not convinced that the bile is nothing and have a feeling the tube isn’t correct.
Anyhow we got home around noon and A was asleep at 12:30pm. He didn’t get up until 2:30pm which was perfect timing for Deb his AVT. Grandma left and then I got A all set up in his chair ready for his therapy. Deb noticed right away that Ashton just wasn’t himself. Within minutes he just looked pale and lethargic. He wasn’t interested in any of her toys which he usually loves and didn’t really want to do anything. She got the bubbles out and he was okay for a few minutes (he loves bubbles)and I caught one smile from him while she did this. There is a song that we do with the bubbles and it is pretty low tone so we think he most likely can hear it. It goes, “bubbles,bubbles up up up…bubbles, bubbles pop pop pop.” LOL Here are the pictures of the two of them.
Well the therapy didn’t last long. A threw up again and I was a little more at ease because it was clear mucus. But within minutes up came the bile. Deb even noticed how off colour A goes when he is trying to catch his breath after vomiting. So we decided to call it an end and just sat and talked for a bit. A is supposed to go for another hearing test tomorrow and I just hope that he is well enough to go because he has missed the last two because of being sick. I really don’t want things to be delayed more than they already have been. So fingers are crossed that he has a good night and is well enough to go. Also kind of exciting because daddy doesn’t work tomorrow so it will be his first time coming with us for the cochlear implant process. Joyce will be here shortly then I can head to bed and get a goods night sleep.
So after Deb leaving A wanted to sleep again. I cuddled with him for a bit but he just wanted to lay on his tummy and go to sleep. He slept for a couple of hours and then was up again and back to the vomiting. It wasn’t until after 6pm tonight that I noticed that it looks like there is formula in with the bile. This is very frustrating for me because A shouldn’t have anything in his stomach. And considering that his feeding tube goes right to his intestines this means to me that the tube isn’t placed probably. This angers me considering that I told the doc at Mac that when I saw the tube on the screen it wasn’t right. He changed it and it was only two short hours later that we were back in there with him correcting what he had supposedly already done. Let me tell you if I find out his tube isn’t in the right place I am not going to be happy. And people don’t like when I’m not happy. 🙂
So it has been a long day. In total since midnight A has thrown up 21 times.
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!!!
Well I have received a few emails wondering if everything is okay and I just wanted to say yes! I was unable to use my Internet for a couple of days but I am all hooked up now! I had just over 100 emails and of course have missed writing in my blog daily.
So this week has been pretty boring anyhow. I still am not feeling the greatest. I went to the walk in clinic on Monday because of my ear and sure enough it was infected. I was started on antibiotics but have to say that I still cannot hear out of my ear and it still is irritating!
A is doing good. He has not caught my cold or anything! Thank God for hand sanitizer! He had his therapy with Monica (OT) on Tuesday and she is very happy with him. Being relatively new to A it is nice to hear considering she is just getting to know him. I was supposed to go to a parent group for children with special needs with my friend Vickie that night as well but we both weren’t feeling good enough to go.
Yesterday A had his teacher from the deaf school (Valerie) and I was irritated to no end! I don’t really know what it is with her, but I just can feel my blood boiling when she is here. I think I really need to look into putting it on hold with her until A is closer to getting into school. He also had Deb (AVT) come over in the afternoon to work with him. She was very pleased to see how much more interactive A is with his toys. He gets very excited lately with toys and really wants to play like a normal baby!
I also talked to her about him hearing certain things now. If you clap loud enough he will look and certain sounds I do he will look as well. She said it is learned behaviour and that he recognizes those sounds now. This will help when he gets his implant because he will at least have some sense of what sound is.
We also did a testing scale for A because of what I was told at his appointment last week with the specialists in London. The doctor was pretty much dead on. A has all of the requirements in the 1-4 month range and a few in the 4-6 month range. Definitely opened my eyes to where he “should” be and where he is. We have to take into account his hearing/seeing obviously so hopefully once he gets his implant we will be able to see all of the 4-6 month boxes checked and higher.
So something new this week with A is his vomiting. He never used to vomit unless he was sick and it seems to be a daily occurrence now. It isn’t formula, but instead is thick/white mucus or bile. It is a bit concerning to me because of how often he is doing it and how much there is when he does. During the night I also hear him dry heaving a lot and gagging during the day for no apparent reason. In a book that I am reading I read that vomiting excess mucus can be the body’s way of getting rid of something harmful. It then goes on to say that the body is made to receive a diversified diet and that there is something called the “rotation diet”. It requires to use four different formulas and change them everyday from 1-4 and then continue. Interesting to read about since I have never heard such a thing. But if you think about it, it really makes sense. A has been on this enfamil now for 14 months. The first six months he was on breast milk. That is a long time to be on one formula that is concentrated to 30cals as well. So when I see his dietitian this week I will talk to her and see what she thinks.
Well tonight we went to the Storm game because they were playing the rival team London. Those are always great games to go to. Storm lost in overtime.