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 it was another fun day around this house. A didn’t have too bad of a night for how crappy he is feeling but he sure did not wake up happy. I took his temperature this morning and his fever was back. Not too bad, but enough that it was noticeable to me. We cuddled on the couch for a bit because that was all that he wanted to do. I tried to call the ped just before lunch but I couldn’t get through so I thought I would wait and of course it was closed for the afternoon. I will be taking him for sure tomorrow.
Andrea was here for 12pm. She is the new social service worker that will be working with A. He had just gone to sleep at about 11:30am so we just sat and talked. At 12:30pm his physiotherapist came over with Leanne from motion specialties. They brought the one stander for us to try with A! It is the buffalo stander which I wasn’t too keen on but willing to try it out and see how I like it. I guess it will be better for us to compare two standers and then decide anyways which one that we want.
I was so excited to get him in it, but he wasn’t thrilled at all. It was so obvious that he did not feel good to everyone that was here. Anyhow we did get him in it and they got it all set up for me so I just have to put him in it and do all the straps up. The pieces that are beside his head are actually laterals that are supposed to go on each side of him, but his head would sway back and forth too much. If we were to get this stander then there is a custom headrest that would be made for him to go on it.
Leanne and Monique didn’t end up leaving until almost 2pm and A was ready to go to sleep again. I did some laundry and cleaning while Andrea was here. She left at 4pm, wow how times flies!
Oh and on an exciting note before I forget, A took a whole entire bottle of sugar water!!!! That is 90mls!!! I wish he would do this ALL of the time and then we could be on the road to getting rid of the feeding tube! But for some strange reason he ONLY does this when he is not feeling well. I think it is because his mouth gets so dry and he is thirsty. Still this is very exciting for me! It was so nice to sit and have him bottling in my arms….I really miss that.
Daddy actually got home early for a change. It was about 4:30pm. I put A in his stander again and with daddy there he was okay for about three minutes and then wanted out. I even tried bubbles and the fan but to no avail.
We decided to go out to grandma and grandpa’s to BBQ since the weather was so nice. We picked up Aunt Shorty and she came as well. Uncle S was also there so we made burgers for all of us.
A passed out at about 8:30pm and when we went to leave he barely woke up while I dressed him and put him in his car seat. Such a cutie!
Well today went well until about 11am. A was up at 9am and was still tired but he was fussing in bed so I got him up. As time went on he was acting irritable and fussing a lot which is unlike him so I knew he wasn’t feeling well. My social worker was here and even she knew that something was up because normally A is so happy. It was hard for us to even talk because he was so fussy and throwing up so much (I could scream!) I noticed he was warm so I took his temp. Sure enough he had a fever. I gave him some Advil and it helped with that. I am really wondering lately if he is aspirating when he vomits. Again last night it was very hard for me to go to sleep because his breathing his so loud and wet sounding. It is definitely different than what I have heard with him EVER. So then I get searching about aspirating and start getting worried that he has aspiration pneumonia. However with the fever coming down I felt much better. I think it is time for maybe another swallow study (although with him not feeding by mouth it won’t help much). I left a message with his GI today hoping that she can see us sooner than later.
I was going to cancel all of the appointments this afternoon but decided when he went to sleep about 1pm that I would just leave them as they were and take the day as it came. So at 2pm Pat came over. She is the manager of HLO, a company that I am getting a PSW through. We talked for a little bit until Dawn came who will be the PSW working with A. I was sooo sooo impressed! She was VERY nice and really was interested in A and what he is doing and what she needs to do with him. So she will be coming here every Monday and Friday for three hours each time. It is almost like I know she is a PERFECT fit for A and I. Kind of weird. Pat told me that if I am happy with how things are going and want another one to come just to give her a call. I know that some of them are willing to do nights so that is going to be an option in the back of my mind for sure. The agency that I get nursing through has no night nurses available right now because of shortage.
At 2:30pm Deb came to work with A on his hearing. It was nice for Dawn to be able to see what he does with some of his days and she seemed to enjoy it. Here are some pictures of Deb working with him. (Oh, and by the way I couldn’t believe how happy he was to play with her! It was then that I decided he didn’t need to go to the doctor’s to get checked on. It is surely an A thing to be like this!)
In this picture she was doing the little piggy’s with his toes. She had done his left foot and then right when she was done he lifted his right foot like he was telling her to do both! It was really cute!
In these next pictures he was laughing! It isn’t too often that A laughs so I was kind of dumbfounded about he whole fever/vomiting ordeal when he was doing this for Deb!
Deb is so happy with how much he has changed in the few weeks since she has seen him. It is always nice to hear how happy the therapists are with him and his progress. And she can never get over how he has such great social skills! Something he definitely doesn’t get from mommy. That is surely a daddy trait that he received!
So after his therapy session with Deb he was tired and wanted to sleep again. Dawn and I sat here and talked about lots of different things. I love how comfortable she was here and how comfortable I felt with her.
Dawn left at 5pm and A decided to wake up shortly after that. And boom it was like a different boy again! He was irritable/fussing…..so frustrating when I never know what is going on with him! I ended up getting him calm but he just wanted to be held all night. Which is fine. I love that he still wants to cuddle! I knew for sure that he wasn’t feeling well because I got out some sugar water in the bottle and he was going nuts! I had to be very careful though because it is almost like in the very beginning when he forgets that he has to breathe and swallow at the same time. He took about 40ml all together which is very impressive for a child that doesn’t take ANYTHING by mouth!
Tonight after daddy got home I went out to get A some pedialyte to run through his tube for the night to hopefully rest his tummy so he can get a good sleep. I also know that when I don’t feel well I don’t want to eat so I am sure he isn’t really too happy having formula go in constantly.
I am really hoping that he has a good sleep and is better tomorrow. It is almost like he has not fully recovered from whatever was wrong with him when he was admitted a couple of weeks ago. I sure wish doctors could figure him out.
And yay, we have a stander coming tomorrow finally! It is the one that I don’t really want to try but I figure it won’t hurt. She may bring the superstand as well but not sure yet as there are still parts on it that need to be replaced.
Well my little man was admitted into the hospital yesterday. Tuesday night I put him to bed and around 1am Wednesday morning he was up and fussing. This went on the entire night. Grandma was here yesterday around 9am and he was still very lethargic and had non stop movements. He just couldn’t sleep and if he did fall asleep he was right back up within ten minutes. I tried to get ahold of his GI team at Mac but they were not in yesterday and his ped wasn’t either, go figure.
Grandma left at 2:30pm and I took A’s temperature because he felt a bit warm. It was almost 104 so I gave him some advil right away. After an hour I checked his temperature again and still no change. At 6pm I gave him some more advil and his temperature came down to 103. His mouth was very dry so I got my syringe out and put water in it. He was going nuts! So I decided to get out a bottle and try that…take a look.
You can see how sick he is in the pictures but I had to get him with that bottle. When I would take it away he would fuss and stop as soon as he had it. So after about two hours of him sucking on it guess how much water he took from it? NONE! LOL
Daddy came home around 6:30pm and I decided that we needed to take A into emergency to get some x-rays done. His breathing by this point seemed labored and he just was not happy at all.
We got into emergency around 8pm and they took us right back. Upon putting a saturation monitor on him, he was only satting in the 70s so they put some oxygen on him. The doctor wanted to start an IV but I told him I wanted to blood work done first and then we would discuss the IV.
They did a chest x-ray and an x-ray of his belly because I was worried that his tube wasn’t in the right spot and there may have been a possible obstruction. The blood work came back that he had a very high white cell count which definitely means that he has an infection. The liver count was also a little high, but his doctor said not to really worry at this point. The x-rays both looked good so I guess that is a good thing.
His ped actually came into the hospital to see him about 11pm and that is when he told me that he wanted to admit A and that there was no way that he was going home. He said that he would do an IV and I told him that I get upset when it takes them many pokes to get one in. He looked at A’s hands and said he could do it in one. So I said okay. However after two attempts it still wasn’t in. I know that he felt very bad, but A was so lethargic that he didn’t really seem to care what they were doing. His ped said he wanted to try one more time and if he didn’t get it he would run pedialyte through his tube. Third try, no go. After some more discussing of the issue he tried ONE more time in his foot and got it in.
We were taken up to a room at about 2am and I was hoping after such a long night the night before and a long day that he would sleep wonderful. Nope not a chance. He was just as bad as the night before. It is so heartbreaking for me to watch him like this and there is nothing I can do.
I have had about three hours sleep in the past two nights. Today for A was just as bad. His fever was still up at lunch so they gave him some more tylenol. At about 2pm I was so frustrated that I went over to the nurses station and told them that they needed to order some medazalam for him. The nurse came back and said the doctor said no because it is too strong for him! I told her I had a prescription for it at home to use so they could do it.
3pm, A was very off colour and just boiling. I went and got the nurse and she immediately called his ped and he came over to see A again. It was then that he ordered the medazalam for him and said he wasn’t going home today either.
So anyhow, I am here just to make formula (they don’t make 30cal at the hospital) LOL and then I will be heading back. Joyce is coming to stay with him tonight so I am looking forward to coming home and sleeping for the night.
I will be sure to update when I can…..
My poor little boy is sick again. I was hoping that yesterday would have worn off by today but he has just gotten worse. I woke up about 1am to him with major diarrhea. It happened a few more times during the night and he had to have a complete change of clothes each time.
The vomiting and diarrhea persisted all day today and he made me very nervous at times. He tries to hold back when he is vomiting so he goes nice shades of blue. Nerve racking at times even though I am so used to it.
Monique his physiotherapist was supposed to come and work with him this morning but I had to cancel that. There was no way that he would be able to do that stuff in his condition. Grandma ended up coming over instead and gave me a break. It is so hard to see him this way. He hasn’t had a fever all day so that is a good thing or else I would probably have him at the emergency. I can handle almost anything, but when he gets lethargic it just makes me worry that something more severe is wrong. And of course his doctor wasn’t in the office today so I wasn’t able to take him in there to be seen. It has all worked out so far, and Joyce is here tonight so I will be able to get some sleep knowing that he is being watched. It would be very hard for me to sleep with him so sick if she wasn’t here.
Anyways, I have downloaded the software needed for the video camera, but have not gotten the pictures on here yet. Sorry!
So instead, I thought that I would post some from one year ago. It is always exciting to look back and see how far A has come!
One year ago today…I remember it like yesterday. J and I got to Hamilton around 3pm and Danielle was cuddling with A. She was looking at me funny and smiled. She had asked if I was ready for some good news. That is when she told me that we were going into care by parent the next week! I started crying and then J had finished washing his hands and I told him. We were both so happy and scared at the same time. It had been a long time coming. He had the first set of his shots and his polyvisol had been discontinued. There was talk of changing his g tube to a button instead of the big ugly tube that he had but that would be discussed in the meeting with Dr.Watts the following week.
I gave A a bottle for his 8pm feed and he took 110ml which was great for him. Marg was on the night shift and we bathed and weighed A. He was 7lbs 13oz. So he has gained 11lbs 8oz since then! Crazy!(Oh, and the pictures are actually from a year ago yesterday.) And the cute little outfit is one of the two that Danielle had bought him for Christmas. It is so tiny that when I look at it now I can’t even believe that he wore it!