So I have some very exciting news to share with you all! A has gained weight. Yes, you read that right. We have been really struggling with A to gain weight for an eternity. To be exact, about two years he has hovered around 23-25 pounds. It has been very frustrating for me to say the least as I was getting as many calories into him as I could. I have been working SO hard to do the blended diet with him since his gj tube was changed to a g tube last February when he had his fundoplication.
On October 22nd A’s dietician had come to weigh him. He had gained about two pounds since we saw her on October 8th. This was VERY odd to me because Ashton had been sick and was on just formula for the whole week prior to her coming here. As well, instead of the usual 1700calories per day he was getting on blended, he was only getting about 1200calories per day. This seemed VERY odd to both of us. So I agreed to continue with just formula until she came this past Thursday. Low and behold, he gained TWO more pounds! So my little man is now 28lbs!!!! We are not really too sure what to make of this but I am continuing as we are now to see what he will weigh when she comes on November 19th. I told her that if we EVER hit 30lbs I am going to have a huge party! A was 28lbs at one point last August from her notes, however it was one of those times where we didn’t really believe it.
A few thoughts go through my head about this. It seems that obviously A’s body does not use the blended food probably to do what it needs to do. Problems with digestion. Not absorbing properly. Who knows. I feel kind of bad because for so long we have been doing the BD and now I know that obviously he wasn’t getting what he really needed on a day to day basis. I feel like this past 21 months of doing BD and working so hard has been a waste. It sucks when you think you are doing something wonderful for your child and then it doesn’t work out. I really really wanted this BD to be successful because I really don’t like the idea of A eating out of a can every single day of his life. I guess I am just going to have to do what works and what is best for him though right now.
J said to me the other night that he could tell A was gaining weight. And when I really looked, I can tell too. You can’t see his ribs anymore like you used to. Makes this eating out of a can seem worth it!
An update now on Auntie A. She is still in Toronto at the hospital. It will be two weeks tomorrow that she had her LVAD placed. I have not been down there to see her since October 27th when I took J down to see Metallica. When I saw her that night, she was in a lot of pain and really tired. It was really hard to see her like that. However that was expected as she was only two days out of having a MAJOR MAJOR surgery.
I spoke with her last night. First time we have REALLY talked since she has been taken to Toronto. She sounds very shaky when talking and she thinks it is the LVAD because it is always running and it does run at almost 9000 RPM. What a trooper she is. Amazing.
She is pretty scared to come home, as I can only imagine! My brother took her outside yesterday and she said that was really scary. I can’t imagine how she will feel when she does go home. Home is a long way from the hospital in Toronto! It is even scarier for her because the chances of EMS or firefighters even knowing what an LVAD is, is scarce. So if they have to call 911 because they need help, really it probably won’t be of much help. She told me that just down on another floor in the same hospital they had NO idea what an LVAD was.
They practiced yesterday changing the device which is always attached to her. It sounded pretty scary. Basically when you unattach her, the blood flow stops until she is changed to a new one. Then when you start that one up it gives a “bump” feeling in the beginning when it starts up. There is so much for her and my brother to learn!
She is not back on the transplant list yet as it has only been two weeks, but I imagine that she will be shortly.
I just can’t believe what one family seems to go through. My brother is very strong and I am so glad that he is such a big support to Auntie A.
Keep up the prayers for them both!!!!
Well this past weekend was very busy and pretty crazy! We left on Friday night to head to Windsor so we could be there to celebrate Cale’s 2nd birthday party. He was also born at McMaster weighing 1lb4oz and we have become very close to his parents. We didn’t end up getting there until almost 1am which was just insane! A didn’t really sleep on the way down and when I had laid him down in the playpen he was just raring to go smiling away.
Saturday was the big day for Cale! He was spoiled and got TONS of cool new stuff. Aunt K also came over to celebrate the day and spend time with her nephew of course. I think Tina and Kelly had more fun with his new toys than he will! LOL
A hanging out for the party…
Cale and grandpa…
Cale and his daddy…
A and daddy…
Cale eating his stars…couldn’t get him to look at the camera for the life of me!
Aunt K and A…
Cale opening gifts with mommy and daddy…
Birthday cake time! (This kid was COVERED in icing!)
A and daddy…
A and Lady…
Cale watching TV haha I love how he stands right at the TV and watches it!
Cale and A hanging out Sunday morning waiting to head to breakfast…
Cale and A watching the TV intently…
We had a great time and I am so proud of you Cale! You are an amazing little guy and we love you very much!
NOW for Sunday. So we head out of Windsor on Sunday afternoon to head to grandma and grandpas for a night. J was taking me out for dinner at the lighthouse near C-town to celebrate our six year anniversary that we had on Friday. Grandma was taking care of A for the night and it was so nice to go and have a nice dinner and the night off!
The weather wasn’t the greatest but at least it wasn’t pouring. It would have been wonderful however if it was nice out because the restaurant is right on the water and you could tell how beautiful it would be on a nice night. We had a great dinner and then came the bag of gifts J had. I opened my card and then reached into the bag. I pulled out two CDs that were wrapped in tissue paper. Then came a tshirt wrapped in tissue paper as well. Lastly I unwrapped a timbit box. I started to laugh and asked what that was about. He said it was to reminise. For those of you who don’t know we actually met at Tim Hortons. Anyways at this point he was moving my purse that was on the floor between us and was VERY nervous. I could see him shaking and knew something was up. He got down on one knee once I opened up the timbit box and pulled out the small box inside. I opened it up and there was the ring that I have ALWAYS dreamed of! He was crying, gave a little speech (well for what he could) and then asked me to marry him! I have been waiting SO long for this day that I don’t think it felt real. LOL
Here is the picture that the waitress took for us before we left…
After all of that excitement we headed back to the house and the excitement didn’t end! Grandma was holding A and I noticed that his tube looked longer than usual. We laid him down and sure enough his tube was broken. It was out further than it should have been and the string inside the tube was coming out of his stoma site. I could hardly believe that after such a great night I had to deal with that! At this time it was about 10pm. I called the London hospital but of course didn’t get anywhere with anyone that I talked to. They all kept telling me that they couldn’t assess him over the phone blah blah blah. Well no shit, I’m not asking for that, I just wanted to know if I brought him in then would they fix it. She couldn’t tell me that. So finally I just said that I guess I would figure out what to do, when to bring him and so on and she said “okay, sorry I couldn’t help”. LOL
A was very tired so we put him to bed and I decided that we would get up early to head to London. Grandma took him for the night so I got a pretty good sleep. Besides the times that I woke up and was looking at my ring! haha
6:30am I was up and getting ready. We didn’t get to London until about 9am and A was pretty lethargic and fussy by this point. Long story short I have to say that I was VERY impressed with the London Childrens Hospital from start to finish. They were all very caring and sure to let us know that things were being done. We were out of there by 2pm and headed back to C-town. (I also found out that this hospital does GJ buttons but it is a pretty long process starting with a referral for A to get one. Great to know though because this long hanging tube is starting to be a real pain with him constantly moving around!)
We hung out for dinner and J’s grandparents had come over to have a drink to celebrate our engagement. I am SO excited!!!! So all of you (and you know who you guys are) better be ready for a big party!
Well it was a crazy couple of days down in Toronto at Sick Kids. A, daddy and I went down on Wednesday night to save us the drive Thursday morning as A had to be at the hospital for 7am. We got down there about 8:30pm and went and checked in our room and then headed out to get a bite to eat. WOW, I cannot believe how many sketchy people are around down there!
After having dinner at the Golden Griddle we went back to our room to try and get some sleep before having to be up at 5:30am. A didn’t go to sleep until about midnight and I didn’t sleep very well anyways. Strange to be right beside him sleeping!
Thursday morning we headed out at 6am to walk over to Sick Kids. We weren’t sure how far it was exactly, but it only ended up being about ten minutes which was nice. I was very frustrated from the beginning of our stay with Sick Kids. We had taken him down to MRI and then they decided that they needed to do an x-ray to make sure that there was no suture inside his stomach from his tube. I told them that there wasn’t one and they had to be 100% sure just in case as metal cannot go into MRI. This was something that should have been checked before the day of the MRI. Anyhow it all worked out well and he was then hooked up and put to sleep. We were then asked to leave the room so that they could get the IV in and just in case they had to put a tube in.
J and I headed back to the hotel to check out and then grabbed some breakfast before heading back to the hospital. At 11am we were called in and went back to see him in recovery. He looked pretty good considering he had just woken up from an anesthetic. (I was pretty emotional waiting for him to come out of the MRI thinking that the next time we will be there will be for the surgery. I can’t even describe how I feel about it but I know that the day we are there for that there are going to be a lot of tears!)
They had him on six litres of oxygen but it came down to about a litre within an hour. He was then moved up to the constant care room on the fifth floor. The nurses and ENT resident were very concerned about how A drops his oxygen sats and how low he goes. It is starting to really bother me as I know that it isn’t normal and something should be done to figure it out. On the “okay” side of this, the ENT resident did say that because A has always been like this with his sats that they look at him as “chronic” and therefore that is probably why no one is very concerned about looking into it.
Grandma and grandpa came down for a bit to see how things went and to visit with A. J and I went back to the car parked at the hotel to grab A’s bag and stroller.
I decided that because A was in the constant care room that I would go home for the night to get a good sleep. Just before we left A decided to pull out his IV and there was blood EVERYWHERE! I got him cleaned up and then we headed out. My gut was telling me not to go home but I did. When I got home I was pretty upset and felt like such a bad mom.
Yesterday morning, grandpa came to pick me up to head back to Sick Kids to pick A up. We got there at 9:30am and I thought that he would be discharged soon after getting there. However that was a whole other story once we got there. The nurse came over and told us that his feeds were stopped during the night because “it was pouring out of his stoma site”. I said I didn’t believe that as he has had the tube for so long and never once have I seen that happen. She said that the night nurse told her that the bed was soaked from it so they had ordered a GI study to see what was happening. They were just about to start an IV and I said no, that I was starting his feeds up. The doctor came over and said that we could do that and see what happened once it was running. This was 10:30am.
At about 12pm there was no leaking and told my dad that we could leave. On the other hand I was worried now that IF there was a leak we would get home and then have to go to Mac to get it looked after. So I figured since the study was already ordered we might as well wait for it.
At 2:30pm they called us down to radiology. We sat there until 4pm!! Anyhow we went in and the doctor put some dye into his tube and said that it was fine. Then he looked a bit closer and said that there was a tiny leak in the middle of the tube that was in his stomach. He showed me but I told him that I wasn’t worried about it because this was the first tube that A has had that has NOT caused a lot of vomiting issues. Before I could say anything he took the scissors and cut the tube right off! He said he was going to just put a new one in. I was NOT happy! A was very upset as the doctor was not being gentle at all. He was satting in the 40s and they weren’t even worried about giving him a break to settle down. He was screaming at the top of his lungs and I was trying hard not to cry myself. It is VERY hard to watch things like this happen.
When we got out of there and back to the nurse that had come downstairs with us I started crying when she asked how it went. I told her I should have just gone home and not bothered waiting for the study. The other nurse told me that she would get the doctor for me to talk to but I said no, that I just wanted to leave.
We got back upstairs and I calmed down. A was tired and went back to sleep. He was satting between 88-90 which was bothering me. I placed the oxygen in front of his fact and he would go up to 98. Take it away and he would go back down. I think that he needs to go back on oxygen because it is obvious that it is helping him. When he was sleeping earlier in the day ON oxygen he didn’t go below 97. So I will calling a few doctors next week to see what they think we should do.
Anyhow, we didn’t end up getting out of Sick Kids until 6:30pm. We are VERY happy to be home for sure!
So now we just wait to hear from the cochlear implant team about whether or not A is a candidate and hopefully get the date for the surgery!!!! I am sooooo excited that my little man will be hearing my voice!
My little man this morning when I went to get him was at the bottom of his bed…
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….
Well today was the day that we went to Mac to see A’s GI doctor to try and figure out what to do about his reflux. With all of A’s issues it is difficult to figure out what is going on and when. I have looked back through my journal, and A had his tube changed on February 15th. On the 17th the vomiting of formula started. On the 21st of February he was admitted to hospital with vomiting, fever and a ton of movements with agitation. He had an x-ray at that point as I was concerned that something with the new tube wasn’t right. However things looked okay. I had asked for a contrast study but they do not do them in Guelph. Go figure.
Anyways, it seems that at that point all of the issues really started. So, his GI doctor said that she is going to put in a form to have a contrast study done to see what is going on with the tube and if it is in the correct place. I had told her my problems that I have had with a certain radiologist and she knew exactly who I was talking about. There is also the one nurse, and the same thing. She knew who I meant. I find this very sad that a doctor knows who I am speaking of. This obviously means that more people have had problems with them. I just wonder why nothing is ever done with people like this. So I should hear this week when the contrast study will be, she said hopefully next week. She also said that she wants to be there as well so I was happy to hear that.
Now, if the tube looks a bit off then she said they will change it and see how things go after the change. If things are fine then we will either have to try a motility drug called cisipride which I am not keen on. It is NOT available on the market and has to be special ordered. It was causing cardiac issues in babies/children who were taking it. So to get it, A will have to have an ekg and then the government has to approve the drug for him. I also would have to sign forms to get it. Then one month after starting the drug he would have another ekg.
If we don’t go that route, it looks like we may have to go the fundoplication route. This is also something that I do not want to do. But with the spell that he had on the 4th, it is very concerning and something needs to be done. So we will see what happens. I am not thrilled with either decision that I will have to make.
A has been much better today with the vomiting than he was all weekend. We were supposed to go for a playdate with Alina and Sophia before seeing GI but we kind of mixed up the dates. However I would not have ended up going as I was not feeling the greatest today. I think that A and I both have had some sort of stomach bug happening.
We stopped by the NICU to see if anyone was on, but no luck again today. I have been waiting for A’s first neo doc to come back (he goes away for months every year) but he had already gone home. When the front desk paged him, he called and wanted to talk to me. So we had a nice chat for about ten minutes. He is a wonderful doctor and we were SO lucky to have him overlooking A’s care for the first good while. I cannot wait to see him again as it has been about six months, if not more.
Some exciting news, A is getting TWO more teeth!! I have been wondering lately why he has not got any new ones in so long and sure enough I noticed the one last night. The other one you can feel. They are both on the bottom, so that will be a total of eight teeth!
Yesterday when A’s auditory verbal therapist was here to work with A, I was giving her the usual update and told her about A’s first word. I was a bit nervous but I told her and she was thrilled!! She is happy that he is making new sounds and like she said, he doesn’t know what it means so it is not a big deal. She actually said to even encourage it if we can. When he says it, we are supposed to show him a truck and say “yes, truck”. (He has not said it again anyways).
I told her about A’s spell and she did warn me that sick kids might not do the implant if he isn’t stable. So that was a bit of a bummer, but at the same time I understand their concern. Every time that he is put under is a risk already and with a major surgery it makes it more complicated. So we will just have to see how that all works out as well.
Anyhow, some pics from today….I got a ton of smiles today!! YAY!
Well today was much better than yesterday but I know that there is something going on. A was up pretty early this morning and was cuddling with Joyce while I got ready to go to Toronto. Grandpa was here for 9am to pick all of us up. Daddy came today too with us so that was nice.
We got to Toronto a little late but not much we can do to help the traffic. The hearing test was just like the past two. I saw some definite reactions to some sound but not consistently. At the end the audiologist (Ruth) figures that his hearing is still at about the 90db range. The next time we go he will have his test with his hearing aids so that will be nice to see then. She also brought out the kit to show us the implant and the devices that go along with it. I can’t believe how technology is able to make this work for people to learn to hear. I am so excited for the day that he will get it in and then turned on. I think the hardest thing for me since finding out that he is deaf is knowing that he can’t hear his mommy talk. That really hurts knowing that I am not able to comfort him by voice like so many parents can do. So the day that he hears me I am going to be in tears, I know it.
So we got home after lunch and A was right to sleep. Daddy went over to his friends for a bit and I stayed here to clean up a bit and rest. A was pretty lethargic this afternoon and just wanted to cuddle after waking up. Very quiet and not smiling. I hate to see him this way.
I went out for a little bit tonight to grab some things and when I came home I asked J if A was sick again. (Today it has only been about five times all day.) He said yes and it was ALL formula. I feel like just screaming. I just cannot believe what I have to deal with all of the time when it comes to his issues and doctors. So I am going to have to phone his doctor in the morning to get him to order an x-ray to check it out. However if it isn’t properly in place then we are going to have to go to Hamilton yet again. I don’t think I will be able to hold my breath if we have to go there again. I am so sick and tired of dealing with doctors that just don’t seem to know what they are doing. Anyhow I could go on and on but I won’t!
I bought A this little chair tonight. It is from the Cars movie and he seemed to like it. I try anything to let him see the world the way that he should be seeing it.
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.