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.
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!
Well A has come off of the vent (was not a fun time!!!) however he is still sounding the same as the day that he was intubated. The doctor from ICU switched his antibiotics yesterday as he has not gotten ANY better and is needing a TON of suctioning. He is having tests done today for Chlamydia psittaci. Long story short, the lady who lived where we are before us must have had two or three birds. It was NASTY to the point we washed the walls, ripped out carpet and replaced it and so on. Well it was the Tuesday A was taken into the place and then Thursday morning he woke up with the fever and then went downhill. Because he has not gotten any better the doc feels it is worth a look into. I was really hoping to have him home by now….but I guess it might be a while. The doctor said yesterday that he “may” have to reintubate. Fingers crossed we don’t go there. The other interesting thing the doctor said was that sometimes kids with neuromuscular disorders and so forth go onto the vent and when they come off have lost their muscle tone that was there. Meaning that this is always a possibility as we are waiting on genetics still. So the suctioning could become a daily need. Praying that it won’t be.
Well nothing has changed. He is still intubated and heavily sedated. Swabs were done yesterday to see if anything shows up or grows. I was told yesterday that his lung x-ray was patchy and they are treating as if it was bacterial pneumonia. However they do think if it is then it is viral. The doctor also said that his x-ray does not really match how sick he is. So no real answers. Thanks for all the thoughts and prayers.
Just a quick update as I don’t really have time and I have SO many people asking where we have been. A is currently in the ICU on a ventilator. Doctors believe at this time that he is fighting a double pneumonia. I will update as things happen. Please pray for him.
Just a short update. Well the surgery is complete!! I am so happy to be past the worrying of how the surgery would go. I want to say first that the delayed emptying scan that he had prior to the surgery showed that he actually had faster than usual motility so this was a great thing for me to want to try out the g tube!
Well 8am A went into the OR. I was strong up until the point that we had to say goodbye and he had a huge pout on his face. The tears started and I just felt so guilty for doing the fundo when it is something I have fought for so long. The surgery was 4 hours long and we had the top surgeon and top anethicist in with him. Grandma and grandpa S came down on Sunday and grandma and grandpa C came down just as he was taken in to surgery.
Things went awesome with NO complications. They were able to do it by lap which was great for him! Once in there they realized that A had a hiatal hernia that was pretty large so they put a few stitches in the duodenum to fix it up. They also took out his gj tube and placed a g tube.
In recovery of course we had issues with his oxygen sats. He ended up having the ICU team and the critical care team come in to see him. Every time that he was touched or he moved he dropped down to the 30s. He was on 100% oxygen and satting about 94. He was then moved up to the constant care room after the docs said that he would be better off there at that point than in the ICU. He stayed at 100% with many, many desats to the 30s and 40s. I was frustrated and so tired that I was getting irritable with the nursing and doctors. I really wanted him to go back up to the floor that he has been on the past month but they said that he had to be on the surgical floor.
At about 9pm last night I finally had them up his morphine and he seeemed to settle right down. The RT was also called in and she hooked him up to the high flow at 60% where he stayed at all night last night. The nurse that was on last night was wonderful and the ICU docs told her that she had to be right there the minute that he rang. So J, his parents and I went for dinner and then got a good nights sleep at the hotel.
This morning his mom and I came over about 7:45am and I was livid when I walked in the room! He was under his blanket completely, crying, oxygen off his face and off colour. The sat however was saying 91 but then I realized that it wasn’t even on him! I told the nurse that I had a problem with all of this once I found out WHO his nurse was and she has been great since. It is absolutely insane that he is in constant care and yet things like this happen. And then they wonder why parents have to stay and not leave?!
They have been able to wean A down to 40% oxygen with sats about 96. He is definitely more alert today and not in so much pain. I am hoping to get the oxygen requirements down more by tonight. They are going to be starting to run clear fluids through his g tube any time now and see how he does. I am so nervous about this whole g tube thing!
Anyways, I am happy things are over with and I just hope that things improve within the next few days. Thanks for all the thoughts!!!