Well I waited all day to finally see the doctor this afternoon. She really didn’t have much to say to me but did of course ask when I would like to go home. Hmmmm ….I said I would love to go today but I don’t have any answers yet. So then she asked if it would make me more comfortable if I took a CPR course. Ya, no thanks. The last thing that I was thinking in November when I had to call 911 was how to do CPR. It is one thing to learn about it and use it possibly on someone else, but when it is your own child it isn’t as easy as saying so.
I had another breakdown today when the chest doctor came to talk to me. I find it so hard to stay strong anymore when I am talking about A. It just isn’t fair that he has to suffer because the docs don’t want to be the ones that are wrong. If they had of listened to me the day that we got here I think we could be home by now. But it took ten weeks (today actually) to finally get that to happen. I told her how I felt that if A was a typical child everything would be done. How no one listens to me. How I know this child SO well it is scary but yet I am treated like I don’t know a thing. It sucks.
The bloodwork was done today for the genetics testing but I have no idea how long it will take to hear anything back. Hopefully I might see one of the docs about that tomorrow. Poor little guy knew as soon as the lady for taking blood came over to his bedside. His sats were down in the 40s before she even got the band around his arm.
The complex doctor was not thrilled to hear that genetics has a new way of thinking about A. Well of course she isn’t…once again she isn’t the big savior in all of this. She asked me what I thought of him and I said he was wonderful. He thinks what I think. He acknowledges my concerns and the rough road I have had as A’s mother. He cares about A. And yes, I got this from the man in a matter of ten minutes. I did tell her that the biggest thing I heard was that A doesn’t have cerebral palsy. She said that he didn’t write that down in his note but rather it said that there is no primary diagnosis. Hmmmm same meaning to me.
I had a nap today and when I woke up it was 6pm. I asked the nurse if the doctor had come back yet with the probe results. She said that she was in and put the paperwork in his chart but that she needed someone to interpret them for her from GI so it would be tomorrow. So I asked the nurse to see them. And voila mom was able to interpret the results. Kinda scary don’t you think? A mother can read the results but a complex care doctor can’t?
So what do you think it showed? Do you think the mother who wanted to put her child through the unnecessary testing for reflux knew best or the doctors? Well if you guessed mom you are right! Now I can say that I was actually surprised that it was not MORE than it showed, but all in all he is still refluxing. He had 53 episodes of reflux in the 24hours with the longest being 7 minutes. Much better than before the fundo, but I knew it didn’t fix it. So I was thinking that maybe when she comes in the morning to tell me that she needs someone to interpret the testing I could do it for her?
What a day!!! I have been smiling since about 5pm tonight because I am SO happy that someone finally is listening to me. Someone finally agrees with me. Someone thinks what I do. And this someone said it before I said what I thought! What you ask?
Well this morning the genetics fellow came in to talk to me. She took the full history of my health, my family, J and his family. Then we went onto A from pregnancy until now. She was very impressed about how much I knew about his NICU stay, what infections he had, the dates and just all of the issues in general. She then told me that she would be speaking to the genetics doctor and they would come back.
At noon daddy went in with A to have his ph probe placed. It was not fun at all but it will be coming out tomorrow afternoon and I cannot wait to see the results!!! The doctors are positive that they won’t see ANY reflux where I think different.
Anyhow the genetics doctor came in along with the fellow I spoke to and a resident. He was very caring and concerned from the minute he walked in. He told me that he had heard all about me and what a wonderful mother I was. Yep, I try to be I told him.
We then laid A on the bed and I took his clothes off. Within about thirty seconds of him looking at him he said “this kid doesn’t have cerebral palsy.” Hmmm wasn’t it not too long ago I was telling everyone how his CP just isn’t typical. How he just doesn’t present how he should. I was blown away. I then told him that the doctor that diagnosed him was the only one that would say CP. He said “of course…you have a former 24weeker that isn’t meeting milestones and you label them CP…it is the easiest thing for them to do.” WOW!!!!!!
He then told me that he thought of course that A had some effects from prematurity but said that with what he was seeing he didn’t think it had anything to do with it. OMG!!!! Have I not been saying for months and months that I am so tired of docs blaming everything on his prematurity?! His CP?! I thought I was going to burst into tears!!!!!
He also is very concerned about WHY A is deaf. He said that it isn’t normal to have a child come in after their first birthday and find out that they are profoundly deaf when in the past they had passed two hearing screens.
I told him that the day we came the docs asked me what I thought was wrong. I said reflux, airway and something no one has figured out yet. He looked at me and said “I think you are right mom. You are a great mother and I am so glad that you have fought how you have to try and get answers. I can’t promise you anything but we will do our best. A doesn’t have any features that make me think of where I can start but we will start somewhere. This must be so hard on you.” He then told me that they are going to involve metabolics as well to start with a workup on him.
I cannot even tell you how good this feels to hear what I heard today. To have someone tell me that they think something else is going on without me saying it first. I cannot wait until I see the complex care doctor tomorrow. Wonder what she will have to say?!??!?!?!??!?!?? Genetics was just coming because I bugged and bugged. She didn’t hesitate to tell us over and over that it would just be genetic counselling and that they probably would not end up doing anything more.
On the other side of it I am very scared. IF A ended up having something genetic that most likely means that the chance of J and I having another child is slim. I long for the day I can get pregnant again….have a big belly….enjoy every minute of being pregnant and then have a big fat term baby. This brings me to tears just knowing that maybe, just maybe I will never get to experience it.
Mothers know best…..that’s all I know. When are MOST docs going to learn this?
Well things are still good around here. A woke up this morning with a fever and snotty nose with tons of desats. With one dose of Tylenol he was already better but the doctor wanted blood work and to send him for a chest x-ray just to be safe. All looked well. We can cancel the swab for RSV in the morning hopefully because that is just not a nice procedure! With his blood work today he went down to 43 which gave them a run for a bit. It confuses me so much how he can go SO low with crying. I really don’t think that is related to reflux which just adds another piece to his puzzle.
I received some numbers as well from his ph probe that he had last week and it really is interesting to see what they said. It showed that he had 178 episodes of reflux over the 24 hours with the longest episode lasting 23minutes! Overall the percent was 8.4.
Went out tonight for dinner with J’s mom who has been here since Monday. It was nice to get away from here for a bit knowing that he was okay.
So today is the two year anniversary of bringing him home from the NICU! I cannot believe how fast this two years has gone. I remember walking out of there like it was yesterday.
Been a very slow weekend around here. The docs don’t really come around and not much is done on weekends. Kind of hard to believe considering the size of this hospital and what goes on here. Aunt K and Tina came down yesterday to spend the night with A and I. It is nice to have people around and not be sitting here alone and bored out of my mind!
I had a doctor come in last night to talk to me around 10pm. She had asked if I had any questions. Well of course. I have lots of questions. So I wanted to know the plan and I wanted to know about his ph probe that he had done. Her response “please don’t ask me the hard questions.” Pardon? Hard questions? That is why we are here. You are a doctor. That is your job. I just kind of chuckled to myself and told her I didn’t have any other questions.
I had a wonderful doctor just come in to speak to me. His first words were “I am coming to talk to you about what is going on and I know that you are not happy with us.” Hmmmm wonder where he got that from? Anyways he was great and totally understands why I am frustrated. He too agrees that we need to start at the beginning again with A and rule things out one by one. Of course this isn’t going to be easy considering all the docs agree that there is more than one thing going on. He told me that he would be speaking to the team tomorrow and getting the doctor who admitted us back in the picture. Perfect. I know that there is NO WAY that this chest doctor would let us go home.
So I guess that is it for now. Should know more tomorrow. Thanks for all the support!
As you can tell I am excited about Christmas with counting sleeps. It is kind of a joke around here because J absolutely LOVES Christmas morning and is still a big kid at heart about it! Every Christmas that we have spent together he is up at about 5am, makes coffee and waits impatiently for me to get up. It is actually pretty cute! This will be our first Christmas here at home with A so we are pretty excited about the whole thing. I just wish that A understood what it all meant but hopefully next year! I cannot wait for him to believe in Santa and look forward to the big morning as much as his daddy!
Other than counting down days for Christmas things around here are pretty much the usual. A is still being horrible at night when we put him to bed and I really don’t know what to think about it. I know people tell me that it is a phase and such but it is so difficult to understand what is going on when he is not really himself during the day either.
Sunday night he almost went into one of his big spells and scared the crap out of daddy and I. Monday he had physio with Monique and he was NOT happy. About five minutes into it he was fussing/crying and AGAIN almost went into a spell. Which got me to thinking that I should have told the new neuro this that we saw a couple of weeks ago. You cannot “almost” go into a seizure. You either do or you don’t. So this makes me remember even more how I don’t believe that they are seizures. There are many times that he almost goes into one but then doesn’t. He looks like the beginning of them and at the end he looks the same, only thing is he skips the whole middle of them.
Monday I got my call back from the sleep clinic at Sick Kids and they have arranged for the ph probe along with the sleep study. They had no idea what an impedance probe is which just blows my mind considering they are one of the top children’s hospitals. Oh well guess I have to be happy with the ph probe. I was however very frustrated because I have two appointments on one day in January there anyways and this was the day that the lady said for the sleep study. I said for sure that would be great because then I would get two appointments over with and the sleep study that night. Much better than driving there two times! Well she had to call back and then decided that GI will not put in the probe BEFORE we see ENT because it could impede on their exam. I told her that I would be VERY surprised if they would do an exam that day as it has to do with blue spells. She then said that you don’t see ENT about blue spells. What?! Anyways I got it worked out for the same day except we will have to see ENT first which means an extra long day as they could only squeeze us in in the morning.
Now for some pictures! Yesterday grandma was here and thought A was ready for a nap. She had turned off his implant and changed the channel on the TV. Well that was it! He is so nosey during nap time that I have to shut off the TV or he’ll just watch it instead!