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!
After set up for the sleep study…
I love how curious he is now!
Cuddles with Vickie…
February 25th with NPT tube…
Well it has been quite a week. I am sorry that I have not posted a recent update but I am just so tired of putting negative things on here. Seems A can never catch a break.
So the NPT tube that he had put in on Monday came out Tuesday morning. It didn’t help him at all and if anything it made him worse. The doctor wanted to leave it in until the afternoon (probably so he could see for himself that it wasn’t working) but I told him that if he didn’t get an RT in to take it out then I was taking it out. The RT was there within about ten minutes. He told me that if it was helping that I would definitely see the change. He said it is pretty amazing when it does work because the kids go from desatting to nothing. No such luck for A.
Wednesday I didn’t see ONE doctor all day. I did take some time out for myself because A had one of his favorite nurses on. So I took the streetcar down to a huge scrapbooking store to get some things for my wedding invitations that I will be making. It was nice to get away and do something that I wanted to do.
Thursday. Big team meeting. I have to tell you it was probably one of the hardest meetings that I have been to. There is nothing like walking into a room full of people staring at you and talking about your child. So the plan right now is that we are going to try the botox in his saliva glands. Because this has to be done under sedation I asked if they would do a CT scan of his chest at the same time. They said they would but warned me that it probably wasn’t going to give them clear answers and if anything it would probably complicate things. They also told me that one CT scan equals about 250 x-rays so to think about the radiation.
There was talk of sewing up his vocal cords so that he can’t pool secretions in his airway and of course the trach but all the docs there agreed that this would not be the next step. Those are life changing decisions that no one is comfortable making right now.
Long story short, the doctors really don’t feel that there is going to be an answer for A. And like they said, they can keep doing test after test after test but as they go it just gets more invasive and unfair to A. They were pretty positive that if there was an easy answer for what he is doing they would have found it. I am really starting to believe that.
Things got pretty emotional near the end when we had talked about everything. They said that they think we need to get A home within two weeks and let him live his life here instead of in the hospital. No one said anything in too many words, but I don’t think anyone in that room thinks that A is going to be around for a long time. Just the words they were using and the looks on their faces. This is REALLY tough for me to swallow. I don’t know what I would do without A. He is everything to me and I don’t want to be planning his funeral anytime soon. The thought of not having him here brings me to tears. It makes me feel SO angry inside. I know I shouldn’t think negative but it is hard not to. I am pretty good at reading people and this is what I felt at the meeting. I came home last night because I have some things to do here for the wedding and I just wanted to go back after an hour of being here. Just looking at his toys makes me cry. I can’t even go in his room without crying so his bedroom door is closed.
Well I should have known not to say anything about A having such a great day! The desatting started again last night and he had a pretty unstable night. This morning it was constant desats to the point where I took him out of his chair, put him in his stroller and took him for a walk. I am just SO tired of hearing the beeping and seeing him drop SO much. It is getting SO frustrating!!!
The chest team and complex care doctor came in around noon and wanted to try out the NPT tube (nasal trumpet). I said no at the time but as the day went I thought it would be worth a try. I knew it was pretty far feteched and too easy a cure but I said okay. I could feel my heart pounding and my eyes filling with tears just thinking of it. I cannot stand feeling like I AM the one putting him through all of this nasty shit.
The NPT tube is NOT nice to look at and I cannot even imagine having it put through my nasal cavity and into my airway. I told the RT when he came in that it looked big but he said it was the right size. I asked about how well it is handled and he told me that once it is in you don’t know it is there. Hmmm really? I then asked if he has put one in and knows this or is this just what they think? This is what they think. I then said that I had to leave because I just cannot handle hearing A scream and cry. Then I feel like a worse mother for not being able to comfort him at times like this. It really breaks my heart though to look at him and he just has NO IDEA what is coming.
So I left and came back about ten minutes later. The RT said that he tried both sides of his nose and the tube was too big so they were waiting for a smaller one. WTF!??! When are they going to learn that mothers know best?!
Anyhow the tube is now in and he is doing okay with it in but it definitely isn’t changing much. He is still desatting and doing all the things he was doing without it. It has also made him more junky sounding and is needing the odd suctioning. Poor guy SEES the suction tube and he will drop to the 40s.
I am giving it the night but there is no way that I am going to be keeping it in with it not helping. The RT came by tonight with another one and said there has to be a spare at the bedside. LOL I told her that if this one came out then that was it. She asked me if the docs know this and I laughed and told her they probably would.
I am at a loss really for thinking we are going to find the answers to what is going on. I just don’t know what they could be missing, but they ARE missing something.
Well I have to say (without jinxing anything!) that A has been VERY good the past two days, including today. I went home on Friday night (only the third time in almost 7 weeks) as I had to go and get my wedding dress! I could not keep putting it off as it can take up to 8 months to get in and I only have under 6 months left! The owner of the store though said she would work miracles for me. So before heading home for the night I had requested a certain nurse for the night and then the one for the day yesterday. This was the ONLY way that I was leaving as I knew that they would take great care of him.
Friday night Aunt K and Grandma S came up so that they were able to come along with Aunt Shorty, Grandma C and I. I did end up getting the same dress that I had first tried on in October. I absolutely know that it is MY dress and can’t wait for the day that I get to wear it and walk down the aisle.
Saturday my heart went to my feet because I got a call from the hospital in the morning. It was the doctor that is on for the weekend for complex care. He was asking me about the NPT tube (nasal trumpet) that we had discussed on Friday. Before I left Friday night I told them that I wanted to be here if they were to do it because I felt that I would be the best judge on whether or not it was working. Anyhow he wanted to know if it was okay to put one in if he felt A needed it. So I told him exactly what I told them Friday night. Well he then said “well you aren’t here 24/7 to judge it anyways.” Now I have to say that I wish I had of responded, however I think I was so shocked by what he said that by the time I would have he was already talking again. I should have said, “listen buddy, I AM there 24/7…this is the third time that I have been home in almost 7 weeks. How many weekends have A and I spent just hanging out and then the ONE weekend that you guys want to move your asses and do something I am at home?!?!??!” Oh I was just so angry!
Anyways, A never had to have the nasal trumpet placed and he had a wonderful day yesterday while I was out. Daddy and I got here last night about 10pm and gave him a bath before he went to bed. We then headed over to the hotel for the night. Today was a GREAT day for him and he was VERY happy and seemed like he was back to his old self. I just don’t want to get to excited as we all know how A doesn’t play by the rules. He also came off oxygen today at noon and is STILL off. This past hour he has been desatting quite a bit so we will see, but so far so good. I am MUCH better with seeing 70-80s then I am seeing single digits or 20s! He only had two big desats today and those were both with crying.
Well I am off to bed…everyone keep those prayers coming!!!