Posts tagged “McMaster

Protected: June/July…and Today…My Due Date

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Protected: Happy 4th Birthday Little Man!!!!

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Sixteen years ago today I lost someone who I loved very much. My grandma C. I really can’t believe that it has been that long. WOW, how time flies. There is hardly a day that goes by where I don’t think about her and how much I miss her. How much I wish she was around me. How much I wish that she could be a great grandma to A. How much I wish I could see her hug him, talk to him, just love him. How much I just wish she was still here, period.

I have yet to understand why we seem to lose the great ones that we love too soon. It just really doesn’t seem fair. And it just totally plain sucks because she was so loving, so caring and such a wonderful grandma. I have SO many great memories about her which I am thankful for.

I really truly believe that even though I cannot see her she is here with us. A definitely has his “friends” that make him smile and giggle and I am sure that she is one of them.

I love you grandma.

It was three years ago today that A came home from McMaster after his ICU stay.

It was two years ago today that he came home from hospital after being admitted for high fever, congestion, vomiting and all that fun stuff.

It was a year ago today that he was still inpatient at Sick Kids dealing with an NPT tube.

And today, well he is recovering from pneumonia!

Hmmmm something about him and the number 23. January 23rds and February 23rds. This explains why 23 is one of my lottery numbers. Not that it has been lucky, but I figure it is significant so I might as well!

Good Luck Day Or What?!

Well things around here are slowly getting back to the norm. A is still on oxygen and we will hopefully be able to get rid of it after seeing the ped on Thursday. I currently have him between a quarter of a litre and half litre. I do wonder though if it is helping his with sleep because everyday for the past three days he is napping for three hours! Normally his naps are only maybe an hour if I’m lucky. He actually went down today at 1:30pm and he is still asleep and it is 4:50pm.

Now for my news of the day! This morning I got a call from cardiology at Mac. They were calling to inform me that they have an opening in the OR for A to have his long awaited echo next week. I was really thrown off with this as his pre-op was in March. Seems kinda funny to me that so much crap has been going on in the past week and they call with this appointment. Anyhow, I was a bit iffy on whether or not I wanted to say “yes” because I really wanted him to be seen at Sick Kids for this. I also don’t like that I was not able to talk to anyone about my concerns of A being put under a general anesthetic. I then told the lady I was speaking to about Sick Kids having a referral waiting for A but the files from Mac have not yet been sent over. It has been about three months since the first day I tried to get them transferred. She told me that she had not been approached with regards to sending all his cardiology reports over to Sick Kids. I however know different as I have spoken to them about four times and the secretary from Sick Kids has also called them twice. Anyways she then informed me that she had no problem sending all the reports over. What?! I wonder about all this….I have decided that I will take A to have his echo done for the main reason that it is going to be a different cardiologist than we have dealt with. I also said that I expect to talk to the doctor afterwards and I want answers.

Anyways next part of my good luck day. I called to speak to the nurse for the pulmonolgist that we saw in October. I wanted to know about the referrals that he said he was doing. She was absolutely wonderful and very helpful. The pulm had talked in length with Dr.Jacobson who was the ped that we saw at Sick Kids a while back. He was very concerned about A and what is happening but since he didn’t believe that it was related to his lungs there wasn’t much more he could do. So Dr. Jacobson took over for the referrals. His nurse however talked to me in length about what has been going on lately and was very caring and sympathetic. Not too often that you find someone like this. (Well for me anyways.) I asked her as well about the RSV shot for A but she did warn me that the pulm would probably be against it as at A’s weight it would be three needles which just isn’t nice. She said he is also getting past the point where they say that RSV would be helpful to him.

After talking to her I phoned the ped that we saw at Sick Kids to find out what was going on with the referral for ENT and the feeding study. Once again I talked to someone that was VERY helpful and caring. The ped wasn’t in but her secretary told me that she would be sure to get her to follow up with me tomorrow. I had also mentioned that I would like to see Dr.Papsin (ENT) as he was the one that did A’s cochlear implant and I really liked him. He also saw what A does when he is having a spell as he was very unstable in the OR during surgery. He had come out afterwards and told me what happened, that there was a team of them in there that were worried and lastly that it would be figured out. Well it never was figured out. When I asked the pulm about doing a specific referral to a certain ENT he said it couldn’t really be done. Well the lady today said that she will see to it that we get in with Dr.Papsin.

SO, maybe just maybe we will finally be getting somewhere!!!!!! I am not getting my hopes up quite yet BUT I am a little more optimistic.

Playdate, Respirology & 23.9lbs!

Yesterday I took A over to Alina and Sophia’s for a long overdue playdate. The girls birthday was on August 13th and I still had not given them their presents! It was a really nice day so we spent it outside. A was not the happiest boy though so things didn’t go as nicely as I had wished. But hey, that’s what happens sometimes with kids.

Sophia and A on the swings…he wasn’t sure what to think at first as you can tell but he then changed his tune…

There are the smiles!

Sophia giving kisses…

Alina woke up for some playtime however A wanted to sleep…

Haha way too cute…

Sophia opening her present…

Alina and her thumb!

Alina opening her present…

After leaving there we headed over to Mac for his appointment with a respirologist. I should add his FIRST appointment with one which is VERY odd to me considering that he was on oxygen until 18months of age.

Anyhow, I was not going to go because I am seeing a pulmonologist next month at Sick Kids but I did go. I am very happy that I did as well. She was a very good doctor and totally listened to everything that I had to say. She didn’t rush me and was very interested in A. I was basically sent to see her because of the whole fundo idea. However I am happy to say that she agrees with me that the fundo is not the route to go! WOO HOO someone on my side!

The first five minutes she spent just looking at him and watching him. Then she turned to me and said “you take very good care of him.” I didn’t really know what to say as I have not heard that from a doctor that I don’t know at all. I said thanks and she said “really, I can tell just by sitting here that you do. And even his shoes match his shirt.” LOL Yep that is me! He is a stylin boy, I can give myself that much.

She thinks that A’s reflux is basically all upper airway which means that a fundo would not help him at all. Hmmmm what I have been saying for months? Basically it is like he is pooling all of his saliva in his upper airway and then he will gag and it comes up. I have been saying for about a year now that I don’t think what he is vomiting is coming from his stomach. It is too thick and just doesn’t seem like it would be. The odd time he does vomit formula which is a big deal considering he has a gj tube but it is very rare for this to happen.

She also asked me who decided that not feeding him orally was a good idea. LOL Well long story short that was taken away from him when he was readmitted after only four days home from the NICU. I had NO say at all and this is when the nightmare began.

Another question she had was why he hasn’t had another scope of his airway done. The last time was February of 2006 while in the ICU. Well I had asked for one but I was told that it was unessary testing. What else can I do? I think she got the hint that I was REALLY frustrated with doctors and the care that A has received. I always feel like I am going in circles and it is so hard to keep fighting for what I believe in when I get no where. I had also told her that he had laser surgery on his airway in December of 05 and when he was readmitted the same surgeon/ENT told me that his laryngeal malaysia was back. Back??!!??! She was confused! Now I am even more confused than I ever was too.

Next question. Why hasn’t he had another echo? Hmmm well we had pre-op for an echo in March of this year. STILL haven’t heard when it is. I have called and I just get told that they need OR time and until something is cancelled he has to wait.

The echo came up when we were discussing his ALTEs-apparent life threatening events. Why she wanted to know has no one looked further into them? Hmmm I have been wondering that since they started happening. Being told by a doctor in ICU that what A does scares him and that he has no idea what to say doesn’t make me feel much better. Being told that every time these spells happen there is a chance that he will not come out of them isn’t helpful either. Being told to make sure that I know CPR doesn’t help either. Besides if the ICU can’t bag him and get air into him during a code blue then how the heck can I do it here at home?!?!?

I feel like I might finally be getting somewhere. I think that maybe, just maybe I have found someone that WANTS to help A.

A waiting for the doctor at McMaster…go figure, now he’s happy!

Laughing away at something…

A with Bonnie from the NICU. We had not seen her in almost a year and she couldn’t get over how big he was! She was an awesome nurse and very caring and true.

A last night before he went to bed sitting with daddy. A loves daddy time at night and is always so much calmer with him than me. I guess it is a nice break for me though 🙂

Frustrating Doctors, Wonderful Respite Worker, GREAT Implant Tuning, Day 5 Of Hearing Age & My Amazing Little Man In His Pony!!!!

Well it sure has been a few busy days around here! Wednesday was just absolutely stressful and crazy! I must have spent about two full hours on the phone dealing with Toronto Sick Kids and McMaster. I received a call from A’s peds nurse from Sick Kids. She said that she had called over to McMaster because his referral for cardiology cannot be finished until they receive all of the information from Mac with tests and so on that they have done. However they wouldn’t send anything over. I called the health records at Mac and told them who I was and what I needed. She said that I had to write this detailed letter and mail it to them before they would fax over any information. So I then called Sick Kids back and she was VERY frustrated as well. I almost feel like when I call Mac this red flag pops up when I say “A”. So now in all my spare time I have to write this letter requesting the information that I have EVERY right to, for them to fax it to the docs I will be seeing at Sick Kids.

I then received a call from the neurology department at Toronto Sick Kids. Now, I had asked A’s ped here to send a referral there way back in October. I never heard a thing. I then had Ashton’s GI from Mac do a referral a few weeks ago and heard nothing. The referral was sitting there in neurology, however the referral has to come from A’s prior neurologist. Had I not phoned AGAIN I would never have found this out. Why didn’t they call and tell me that I needed the referral to come from Mac?!? Anyhow I then called Mac to tell his neurologist there that I needed a referral to Sick Kids. The nurse told me that it didn’t make sense to her. I won’t go into detail, but I can say after some tears and major frustration the referral was FINALLY done!

Shelly who is A’s new respite worker was here that day (thank God!) and today. She is absolutely AMAZING with him and I am so comfortable with her already. She really takes interest in him and makes him do things on his own too instead of her doing everything for him. He needs someone that is like that because he is so used to just having things done and needs to learn that he CAN do things on his own. (I am talking about toys and things of course.) I have to sit back and smile/laugh because she is not afraid to be a big kid herself. I am very lucky to have found her.

Wednesday A also had a new lady come to see him from CNIB for his vision. When I had spoken to her on the phone I explained his situation with his eyes and said that I was frustrated because I didn’t understand how he reacted the same to things with and without his glasses. Well I don’t think she was really listening to me because when she came she was very shocked to see how well he uses his vision. She said that most kids that she sees don’t see some of the toys that she brought. And the one was this huge circle with colours. Kind of looked like a big lollipop. Man, this kid would probably see it across the street! Anyhow, she gave me a form to call and make an appointment with a doctor in Waterloo. haha just what we need!?

Yesterday grandma, A and I headed down to sick kids again for his implant to be turned up and tuned some more. Ruth was playing a bunch of sounds and you could tell when it went louder that he knew because he started to tense his legs. (We couldn’t hear these beeps as they are played right from the computer to his implant.) After she had all of the sounds and probes set she unhooked him from the computer and told me turn on his implant. I was holding him at the time and the minute I turned it on he jumped! He jumped so much that my mom thought that I had pinched him by accident. He immediately got this HUGE, and I mean HUGE pout on his face! I haven’t seen one that big out of him EVER! He must have had the same face for about two minutes. I was laughing SO hard along with grandma and Ruth and then he started to laugh! It was so nice to see the obvious reaction. Of course I didn’t take my video camera with me because I didn’t think that there would be much to it.

So it seems now that every time that I turn his implant on he smiles. It is obvious every time that he is hearing! I am so excited for him! Last night at grandma and grandpas he had some pouting happening with sounds and toys. Something he has never done before.

There is one more program that Ruth put on the computer of his implant so I will be turning it up probably Monday. We don’t go back to Sick Kids now until August.

Today Shelly was here and Dawn as well. Lucky to have so much help today so I can get all my packing done that I need to! And with A there is TONS to be done!

Anyhow, I will leave this post with some pictures of A in his pony. He isn’t seeming to like it very much because it is hard work for him. Today he was screaming at the top of his lungs so I took him out. Of course then he is fine. What a kid. He is lucky I love him so much!

Our 2nd McPera Picnic!

Yesterday was the annual picnic at McMaster hospital for all of the graduates of the neonatal intensive care unit. We had a great time and got to see all of our preemie friends again! I also was able to meet to different moms that I have met over the Internet who also had a child in the NICU at McMaster. It was great!

Grandma and grandpa came with A and I as daddy was up north fishing with Uncle S. We both miss him and can’t wait to see him! Anyhow here are my pictures from today!

A waiting to get his tattoo with grandma…

A and his tattoo artist 🙂 Notice the leg….

A with the amazing Dr. Shah!!! Actually, it is kind of ironic that two years ago to the day, A was only 13 days old and VERY sick. Dr. Shah had called both J and I to come into the hospital. I will never forget that day. I was just getting ready at the Ronald McDonald House and I got the page. I panicked especially when I was then handed off to the doctor. He told me to come ASAP. I did that. Meanwhile he had called J (who was working in Guelph). My parents had come with him. I think they made it to Hamilton in about 30 minutes…maybe less!

Anyhow, when I walked into the pod where A was I saw a lot of people around his isolette. I started to wash my hands and could feel my heart in my feet. I felt so sick. The tears started before I even reached the corner A was in. Dr. Shah just looked at me and shook his head. More tears. Danielle was on this day too which helped me a lot.

We had a meeting with Dr. Shah that afternoon. I remember how long that walk felt down to the room we were meeting. There was a sign on the door that said “The C’s”, it was awful. They had given A a drug to paralyze him because of some strange jerking and stiffening movements which he said they had never seen before. He told us that he wished that he had answers but he didn’t. Time would only tell what would happen. He also took some spinal fluid to see if anything would show up there.

J and I were also told that we needed to make some choices. We wanted everything done for A. He told us then of the chances of him being blind, deaf, handicapped but none of that mattered to us. We just wanted our little boy saved and alive.

Then, to a year ago today….another meeting with Dr. Shah. A had also stopped peeing and he was concerned about kidney failure. Nothing showed up in the spinal fluid or the blood cultures. They still had no idea what was going on.

Two of the worst days of our lives for sure. But without this wonderful doctor A probably would not be here today! Dr. Shah will always have a special place in our hearts…

A with Hamilton Tigers mascot…he sure didn’t know what to think!!!

A fishing just like daddy and Uncle S!!!

Sweet Cale…

Walking with daddy…

Little Alina and her thumb…

A, grandma and Alina…

A starring at Alina…

A, Sophia and Alina…

Avery and Olivia…

Alina, Steve, Brian, Avery, Olivia and Shannon…

A and Maddox…I met his mom through the Internet and we got to chat a bit in person!!! He is a cutie!

My little man…tired but still giving me some smiles!

Grandpa blowing some bubbles for A…

Cale enjoying the bubbles too…

A with Steve. He was also another great person involved in the beginning, including the two days I just spoke of. So caring and compassionate with his work. I remember him telling me when A was leaving the NICU that he wished I could share some of my devotion and attitude with some of the other parents. It is always comments like this that make you feel good.

A and Cale…

Avery and her grandma doing some colouring…

My little man…smiling away for the camera!

A checking out Avery (with her grandma and mommy)….

More smiles!

A and Cale laughing at Cales daddy playing peek a boo….

My favorite picture!!!

A back at Sophia and Alina’s house…a little more relaxed since losing his shorts! (We all headed over for a nice visit)

Alina enjoying being outside!

Avery by the pool…

Alina and A sitting side by side…A was just babbling away here, it was really sweet…

Holding hands…

Olivia and Sophia and Alinas grandpa…

Avery and daddy…

Alina and mommy…I missed the big smiles…

Vickie and A…

Thanks Steve and Vickie for having us over, we really had a great time!!! After leaving there A and I headed over to the hotel with Tina, Derek and Cale.

Looks like these two boys are just like their daddies haha

A in his floating wet suit haha it was way too funny trying to get him into this thing!! It worked AWESOME in the pool though for him!! I have had a really hard time finding him floating devices that work at all. With his low tone in the neck and trunk it makes it hard to hold him. This helped him hold his head up and was no work at all for me!

Cale in his jumper…

A watching tv and STILL smiling away (no nap today either, pretty impressive!)

Cale in bed…I was trying to take a picture and he covered his face with his blanket…

Then the washcloth…

YAY, I finally got the picture!

So it was a LONG day for everyone! A and I didn’t get home until 11pm. And I am happy to report that he had a pretty good night!!!!