Well it has been a very tough couple of days for me. A was taken off of the vent on Sunday and did okay until about 5pm. He then started with his morphine withdrawals AND blue spells. I was just beside myself.
Anyhow, the one stitch has come out of the right side of the trach. This is of course the side that is a bit wider open than the other. We had to change his trach tie Monday night and he did NOT like it. He was crying his eyes out and was very very off colour. I don’t even want to see this kid when we have to do trach changes!
There is a chart at his bedside where the nurses are to record all blue spells/desats so the doctors can try and figure out WHY he is still having them with the trach.
Monday I probably cried for three hours straight. I just am SO tired and just want things to be fixed and go home. There have been alot of tears shed this week!
On a positive note, he is sleeping BEAUTIFUL. I don’t want to jinx things, but so far so good in that area. The only exception was last night which he was up from about 12am until 6am. I was finally able to see his sleep study that he had done almost two years ago while we spent 88 days in Sick Kids. He had a total of 58 obstructive episodes which came down to one every five or six minutes. Those are obviously gone now with the trach.
Why on Earth I was told by his team at Sick Kids that his sleep study was not that bad is beyond me. His RT here said that his sleep study was “scary.” To me this is something that should have been dealt with almost two years ago.
He is breathing better in the day and does not have the nasal flaring that he has always had and the hard work of breathing.
We had a team meeting Tuesday and the issue now is his feeds. He is aspirating (we got formula out of his trach Monday-not 100% sure but pretty sure it was) and we are trying to figure out what to do. I was told by the docs that I am NOT allowed to have any say in feeds right now and they are trying to work them out. This is VERY hard for me as I am a 24/7 hands on mom. So they want to feed him straight peptamen 1.5 at a rate of 20mls/hour from 8am-10pm. Today he is up to 40mls/hour for the same amount of time. This makes me ANGRY. He has to sit in his chair this whole time. I know it is only temporary, but I am stressed out after watching him in his chair for ten minutes with the trach.
The doctors said that I am probably emotionally, mentally and physically exhausted and therefore they are taking some “burden” off of me. However I did say that I am the one sitting there all day with him, not the dietician. I am the one watching him reflux. I am the one dealing with him being upset because he is NOT comfortable in his chair.
Yesterday and today from about 12pm until 2pm he is just CONSTANTLY turning blue and just not happy. I really don’t know what to think of it but I just hope that this stops.
Just another day…..I really need to start seeing a light because I am already stressed to the max! Here is a picture I took last night myself of my little man and I.
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 my little man is sick again. It started last weekend with him not sleeping very well and having a lot of desats. Sunday night we started him on oxygen which seemed to help so I figured he was just needing some extra support. It wasn’t really until Wednesday that he started with the coughing, going off colour a lot more and just not being himself. When he got up that morning he was not looking well at all. Daddy cuddled with him on the couch and when I happened to come in the room after about fifteen minutes and look over at A he just looked BAD. I went upstairs to get his monitor and he had very low sats that would not come above 60. I got the nasal prongs out and put him on oxygen and that really helped him. I called his doctor here in town but they could not see him until yesterday.
Grandma and I took him in for 1pm and A did not want to be there. He was also tired as I had just woke him up before we left. He was going off colour and the doctor did not like what he was seeing. I have to add that this doctor has seen A go off colour MANY times and never ONCE has he been concerned like he was yesterday. I really think that he received a letter from Sick Kids about how we were treated the last time that we were in Guelph emergency.
Anyways, he told me that he wanted me to take A to Toronto or to Hamilton emerg and have him seen there. I started crying of course because I absolutely HATE hospitals and it just was the last thing that I wanted to deal with. It breaks my heart every time that we go there and they have to poke and poke him for IVs. He suffers SO much and there are times where I really just can’t do it to him.
Anyways, we ended up leaving the doctors with a note that I was to give to the emerg doctor telling him about what he saw while we were there. I was very upset because it is always the same old thing when we go. People rush around like mad when they see A’s oxygen sats but as soon as they hear that he has a history of them it is like they don’t give a crap. Very frustrating as a mom but I cannot lie to them as all of these hospitals have record of A.
We came home and I called his team at Toronto Sick Kids. The NP that I deal with did not feel that A was at the point of needing admitting. We had put on his Wonder Pets for him and he was only on half a litre satting 100. He was smiling and just not seeming sick enough for me to want to deal with emerg doctors on a long weekend. After speaking to her I decided that I was just going to keep him home.
We had a nurse on last night and she said that A had a pretty good night. He was restless between 3-6am but other than that he was satting well and sleeping well.
I have had to do some suctioning and for once in my life I am actually getting things up and out of there! Makes it much easier for me to do it knowing that I am helping him.
Today he woke up not so happy and I thought we would be heading into emerg today but once I got him dressed and settled he was fine. We went for a nice long walk and he went down for a nap at 3pm and is still sleeping soundly now at 5:30pm. I have the compressor on with a mask near his face and he has not dipped below 90 once.
I just hope and pray that things get better for him before they get worse. I don’t know why on Earth he keeps getting sick so much this year. It is the crappiest year of my life EVER! He has only been home now for just over three weeks from his last ordeal and I really don’t know if I can handle being in there again so soon. I keep wondering when we are going to catch a break around here and have good things happen?
In other A news, we started speech therapy on Tuesday. He will go every Tuesday for eight weeks to start off. It was interesting but I really do wonder how speech therapy works with a child that is non verbal and very stubborn?! We’ll just have to see how it goes.
These were taken March 25th…I had been feeding him and his extension came undone so the food went everywhere!
Look at what he did with physio last week!!!!! First time EVER!!!!!!!!!
Is he not just amazing?!?!?!?!?!
I have been getting a lot of emails from people all over the Internet asking how I am doing since losing H. It was two weeks ago tonight that I went into labor with him. I can hardly believe that fourteen days have gone by. There are times when I am so heartbroken and just cry and cry. And then there are other times that I just feel like everything wasn’t even real. I just wish I knew WHY it happened.
I have been doing pretty well though I think this past week. I have started a blog for Hunter, more of a diary for me to write my thoughts and feelings. I have always been a big person for writing a journal and I think this has really helped me already in dealing with my grief. It helps to get it out. It is a private blog that only I can get into right now but in time I may open it up to some of you that would really like to read it. Let me know if you are interested.
I have also contacted my social worker that I have dealt with on and off since A came home from the NICU. She will be coming next week to talk. She is a wonderful lady and it really helps me to talk to her. I have not seen her since before our wedding so there are a lot of things to talk about.
I also wanted to say thanks to those moms in my Internet world that have been there for me and talked very openly with me about losing their babies. It always helps to talk to others that have been through it. Makes you understand that you are not the only one. That you are not to blame. You guys know who you are!!!! Huge hugs to all of you!!!
Another thing. People seem to be so afraid of asking me how I am when they see me. Afraid of saying anything really. Do NOT be afraid. I want to talk about H. I want to remember him. When people “ignore” asking me anything I feel like he didn’t matter. I know that is not what people intend at all but it hurts me more to hear nothing than to hear something else.
I don’t want to hear that God wanted it this way. I don’t want to hear that it wasn’t meant to be. I don’t want to hear that God doesn’t give me more than I can handle. I don’t want to hear that he is in a better place. I don’t want to hear that I am young and still have lots of time to have babies. I don’t want to hear that I can always adopt. I don’t want to hear that we are supposed to have an angel. These are all things I have heard yes. And honestly it drives me mad.
Actually, this makes me think of a poem I read on the Internet. Here it is:
Don’t Tell Me
Please don’t tell me you know how I feel, unless you have lost your child too,
Please don’t tell me my broken heart will heal, because that is just not true,
Please don’t tell me my son is in a better place, though it is true, I want him here with me,
Please don’t tell me someday I’ll see his face, beyond today I cannot see,
Please don’t tell me it is time to move on, because I will never be there same,
Please don’t tell me to face the fact he is gone, because denial is something I cannot stop,
Please don’t tell me to be thankful for the time I even had, because I wanted more,
Please don’t tell me when I am my old self you will be glad, I’ll never be as I was before,
What you can tell me is you will be here for me, that you will listen when I talk of my child,
You can share with me my thoughts, you can even cry with me for a while,
And please don’t hesitate to say his name, because it is something I long to hear everyday,
Friend please realize that I will never be the same, but if you stand by me, you may like the new person I become someday.
Just a quick update as I am on my way out. Yesterday grandma and I took A to emergency here in town. Long story short, he was in respiratory failure and was taken by helicopter to our childrens hospital in Toronto. They had to intubated him before leaving.
When we got there last night he was needing a lot of meds to keep him calm/sedated. Heartrate was 220 which is what they were concerned about at that point.
I will update as I can!!