Well this is now A’s new website. It is a work in progress so be patient with me. I have a web designer working on it for me as well. As you all know, I would really appreciate if you do NOT add this to your blog list. There are reasons I had to go private before and I just don’t want certain people finding this new site. That is why we are now referring to my boy as “A”. So if you have A on your blog list, just leave his old address listed as I do not want this listed anywhere. SO PLEASE DO NOT HAVE THIS AS A LINK ON YOUR PAGE!!!! Thanks everyone!
So it has been kind of crazy around here once again. On October 16th my little man was really struggling in the morning. So much that I really thought that he was possibly heading into respiratory failure again as he did he March. By lunch time I was nervous so I took him into his doctor. I was so positive that we were going to be admitted that I packed all of my bags and A’s bags before heading. He was requiring oxygen at times and was struggling to breathe.
So we got him into the doctor and he was NOT concerned about him! He said that his throat was kind of red and irritated so he placed him on an antibiotic to be safe and then sent us for an x-ray.
Saturday morning (the 17th) his doctor called to tell me that his x-ray actually looked pretty good. I couldn’t believe it. Friday night was HORRIBLE. A had to sleep in his chair and every time that he fell asleep his sats would drop to the 70s and stay there. If I woke him up he was above 90. I cried and cried because I felt really bad for him suffering, but I didn’t know what else to do for him. I told his doctor that I was really angry and that I felt something more was going on. He told me if I was that worried about A that I should take him to the ER. Ummm that is why I brought him to see YOU, so we could avoid the ER!
Anyhow, on Tuesday the 20th we had an appointment anyways with his respirologist at Mac that I absolutely LOVE. It is the vent clinic that A is now under even though he isn’t trached.
We did a cap gas first which showed that his CO2 was at 54 and his O2 at 75. He was very junky and had needed a lot of suctioning over the weekend. They did swabs for viruses and then his swab to check for pseudomonas.
He wondered why A was on the antibiotic that he was on and stressed that when it comes to A that doctors really need to be more aggressive. He has very crappy lungs and anything can happen. So he placed him on cipro (in case the pseudomonas was active) and on prednisone as well as many extra breathing treatments.
I felt MUCH better walking out of there because I feel like this doctor is so PRO active with A. It is about time that someone really cares for this kid and his well being!
So A and I spent just over a week sleeping on the couch together and trying to keep him out of hospital. As of today, he is doing wonderful!
On another note, I really need people to send lots of love and prayers to Auntie A (my sister in law), my brother and her family and friends. As most of you know, about 18 months ago she was diagnosed with cardiomyopathy with a heart function of 20%. She has stayed so positive and strong that it is just amazing!
Well for about the past three months she has been telling her cardiologist that she has severe stomach pain, is nauseous 24/7 and cannot eat. He told her that it was probably her GI issues/gallbladder. Twice she almost had her gallbladder removed which would have been for NO reason.
Long story short, she ended up in hospital on the 5th of October after going to a class for people with heart conditions. There was a pamphlet given out with symptoms of heart failure. She had them. These were what she had been complaining about to her doctor for months. It was then she found out that she was in severe congestive heart failure.
October 12th she was transferred to Toronto General. It was there that she started to really rapidly decline. Last week she was officially listed for a heart transplant. However with her poor days they just couldn’t let her go as she was.
On Friday October 23rd she had a code blue called. I went and saw her on Saturday and she was HORRIBLE. I couldn’t believe how much she had deteriorated since I saw her last which was only four days prior.
Sunday it was decided that she needed to have the LVAD (left ventricular assist device) placed. They were hoping to avoid this until this coming Friday because they didn’t want to do the LVAD and a heart transplant as it would be very hard on her. However a heart had not come yet and she could not keep going the way that she was.
I was up at the hospital last night to see her and spend some time with my brother. She was very tired and in a lot of pain. The things this girl has gone through are just incredible. Her fight is inspiring to say the least. Please keep praying for her and all who love her.
Well let me start off two weeks ago today. I got a call from A’s chest team saying that they believe that he just might have cystic fibrosis even though his sweat test that we did in March came back negative. WHY? Well because of the pseudomonas. And if he comes back negative for cystic fibrosis then they want to look into primary cilliary dyskenesia. So a lot of people have been saying “well at least they are doing what they should be now.” Yes, very true, BUT they are only looking into things now because of the pseudomonas. That’s it. I have been telling them for YEARS that they need to look closer at his lungs. In my mind it is the ONLY thing that they have not ruled out 100%.
Last Monday we headed to Sick Kids. We were told to not be late for our appointment as they would rebook us and that would be it. We have been waiting for this genetics appointment now for over a year. Anyhow we were there on time and placed into a room. A nurse had come in and took a little bit of information down about A and left telling us they would be right back. This was at about 1pm. At 2:30pm I went out and asked the man at the desk if we were forgot about. I mean for real, one and a half hours sitting in a room with a child that usually is napping at this time?? He told me the doctors were probably in the back room talking about A. Hmmmm well they didn’t know much yet, how could they be talking that in depth about him? That so wasn’t the case.
Guess what time we finally saw the doctor? 4:30pm!!!!! No apology, nothing! I was not too impressed and can’t believe that a doctors office can get THAT behind. Just not right at all for families to wait this long.
Anyways, we talked about A. He had read his files. Well some of them. He would need a year to read everything. He feels that something else is going on with Ashton but again just has no idea what or where to begin. One of the things that he was really hoping for was a new MRI. Unfortunately this is not going to happen as A has his cochlear implant and cannot have an MRI. The only way this would be possible would be to remove the implant, do the MRI and then replace the implant. And there is not a chance that I would do this to him!
So we left the appointment to head down to get a bunch of bloodwork done for this genetics doctor as well as the gentic bloodwork for the cystic fibrosis. When we go back to this doctor in 6-12months we will discuss the results as well as talk about doing biopsies and a spinal tap to check for neurotransmitters. Nothing like moving slow eh?
In other news. We had H’s service here on Sunday, Mothers Day. It was perfect for us and I feel much more at ease with everything. I definitely needed to do it to help me heal. To ease the pain. To put him to rest. We did a balloon release for him at the end of the service which was really awesome. I had pictures laminated of him and we attached one to the balloons before they were sent off. I also mailed out a ton for people that wanted to be a part of this for him. I have had six different people email their pictures already of the release that they did and WOW how touching. I cry every time I look at them. It means so much to me that people care enough to want to do this for us.
I will post the pictures we took soon…I have no space left on this blog so I am trying to figure that out!
Wow it has been a long time since I have blogged!!! A is back to himself and has been for about a week now. He came off the oxygen last weekend and by Monday of last week he was smiling and his happy self. Not too sure what the issue was with him, but I am not complaining!
So things have been interesting with him yet again. We went to Sick Kids last week to see his complex care team and his chest team. More or less just a follow up of his stay that he had there in March. Anyhow, as you probably all remember, he tested positive for pseudomonas while he was intubated. Once we were out of ICU and onto the floor the chest team had come and told me that they did not believe that he really had pseudomonas. They believed that it was a contaminate of some sort. So they wanted to do a swab of his throat to see and the main doctor said “I can guarantee you that it will be negative.” He was VERY sure of himself. I had to trust him as he has been doing this for many, many years.
Well we found out that A’s swab was POSITIVE. His complex team and the chest team have NEVER seen a positive pseudomonas swab of the throat. It is just mind boggling to me how A ALWAYS and I mean ALWAYS is different. So while we were there they did another swab.
I just got word yesterday that this swab was also positive. YES, I can’t believe it. I don’t understand it. And I hate how we NEVER EVER seem to have ANY answers for everything that happens in A’s life and my own for that matter. The chest team called today and they are going to start him on tobramycin. I was so upset on the phone I was in tears. When they first found the pseumdomonas in the ICU, they had started him on two different antibiotics to treat it. But after only two days they took him off those and decided NOT to treat as they believed it was not a real positive. WHY couldn’t they have just finished the course of antibiotics?!? UGH it makes me so angry.
Anyhow, besides that there is not much new with A. We are patiently waiting for his metabolics/genetics appointment which is next Monday. We have been waiting for this day since last March!!! I have started a list of things I want to talk to them about so that I do not forget anything. The complex care team also told me to make sure that I mention our recent loss of H as maybe they will wonder what is happening too.
Speaking of H, I just got my tattoo on Saturday for him. I absolutely LOVE it and I am so happy that I did it. It is hard for me at times because it is like I can NEVER not think of him as I see my arm all of the time. I am getting used to it though and love the fact that I can see him whenever I want. It is just beautiful.
I can’t believe that it has already been almost five weeks since we lost him. Time just goes so fast and it really makes me stop and think about how I have to slow down and enjoy things in life because there is no turning back.
I went on Monday to see high risk to discuss my loss of H. We are starting with some smaller ideas to see if anything shows up and then we will discuss the results. I had bloodwork taken to check my thyroid as well, she is wanting to test me for diabetes. There are some swabs she wants to do as well but we are going to wait for a few weeks for when I go in for another procedure. They are going to insert water into my uterus to see if there is anything wrong with the structure of it. Any of things would be okay because they are FIXABLE. But over 50% of women never have answers that are that easy so I am not getting too hopeful about it. Wouldn’t it be nice though if just once things went in my favor?!
On another note, this little girl needs all the prayers she can get. Every time I read her blog I am in tears. She had went into hospital for a g tube placement and a fundoplication and is now brain dead. Just so horrible that I don’t even know what to say.
Well started out as a good day. A had been doing all of the breathing on his own for quite some time by the time I got there this morning with grandma. He was on very minimal support. Had a great day with only one desat and sleeping contently (no sedatives).
3pm we decided to try and extubate. He was awake and I would have thought he was ready if they asked me. Tube came out and it was horrible. He would NOT breathe. The doctor started yelling out meds that she needed and sizes for intubation tubes. I asked for her to give me a few seconds to try and calm him. She was kind of angry as at this time his saturation said 14 but I wanted the few seconds. They continued to bag him and I got him pretty calm. He was satting 100. But unfortunately as soon as they stopped bagging he would go very very blue and just not breathe. It was very scary. It was like he just didn’t care. It was not agitation at all causing his problem.
A code was called and within minutes there was a room full. I was still leaning over the bed holding his head in my hand and rubbing his head with my other hand. I was crying. I am just SO angry. So upset. I just don’t understand.
When they went to intubate again I left the room bawling my eyes out. My heart is hurting. I feel so guilty for all the bullshit he is going through. I know I don’t have to but as a mom watching her child suffer I do.
So he is sedated again and on a rate of 25 with oxygen of 50.
Oh, he did hapen to grow a moderate culture of pseudomonas. However the doctor does not think that it would have made him this sick and it does not explain the ordeal today.
They started giving him dex at a dose of 5mg every six hours for four doses.
I’m just one scared mommy.