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 I think that maybe, just maybe the doctors are getting their acts together. On Wednesday they came back and started to talk again about going home. I told them that if they made sure the discharge papers said that he was having cyanotic episodes then I would take him home. Well needless to say I didn’t see the doctor again until Thursday. They know that they cannot send a child home that isn’t stable.
I was also told by the doctor on Wednesday that one day soon I need to start advocating for A. I think I almost fell out of my chair. I asked if she was kidding and she said no. I said that from day one that is ALL that I have been doing. I haven’t stopped advocating! And as far as I am concerned I advocate WAY too much in my mind. I shouldn’t have to fight and fight to try and get answers for A. She then told me that doctors are always going to come in and want to do tests and that isn’t fair for me to continue to let this happen. She said at some point I need to start advocating that enough is enough. WHAT?! But no one wants to do tests. And then she told me that it isn’t fair that I am requesting all of these tests for him. In particular the probe that he is having done on Monday. She said it is unnecessary testing that I am willing to put him through. Now give me a break. The last thing I like to see is A having anything done. It is hard for me not to get emotional when they take blood! But I feel the probe IS necessary to see if he is refluxing … end of story.
After some more fighting about the echo cardiology finally (but reluctantly) agreed to do an echo. So that was done yesterday and from what I heard last there was nothing seen. This is wonderful news! Just another thing that I can rule out.
Genetics came up in conversation again and she didn’t feel that was necessary either. I was confused because I had another doctor mention that A could have some sort of genetic mutation. She told me that the next time that I was pregnant I could just have an amnio done to tell me if anything was wrong. I told her that I couldn’t do that. I already had one preemie and there wasn’t anything that I would EVER do to risk that again. She said if I had it done early enough then it would be okay. Ummmm NO!
Well guess what? Genetics is going to be doing a consult. They came up yesterday but will be coming back on Monday to speak to me.
I also told the doctor that I felt that if A was “typical” then they would be doing everything possible to try and figure out what was wrong with him. That if he wasn’t a preemie and didn’t have cerebral palsy they would figure it out. I really am getting the feeling that they look at him as TOO disabled. But A is my child and that doesn’t matter to me. He is my life and I will continue to fight for him as long as I have to. I think they are starting to realize this.
He continues to have episodes. It seems odd too that most times they are at 2pm and 10pm. I can’t seem to figure out what is going on at that point that would cause this to happen. Two nights ago he had one that really scared his nurse and she is a nurse that usually works in the ER. This says a lot to me. Today he had one for about thirty minutes where he didn’t come above 60. I just don’t know what to think about them. All I know is that they are very hard for me to deal with and I myself feel really scared at times.
Now for some long overdue pictures…
Well I got the results of the sleep study today. It sure doesn’t make anything more clear or easy! So basically it shows that A has high CO2 levels like I said before. However after I left I guess his CO2 stabled out at about 56. Still a bit higher than usual but much better than 80. They tried a few more times to shut off his .5L of oxygen but then he would desat so they would have to turn it back on. They then tried him at higher amounts like 1L and 2L. This would then increase his CO2 even higher. What does this mean? Well it means that oxygen is not a good thing for A. However at .5L it is okay…just no more than that. Oxygen at higher levels than this becomes toxic to him basically. This also explains why he doesn’t do well with sedation of any sort.
This also tells them that A is requiring a higher CO2 level than normal to have the drive to breathe. They think that over time his baseline of say 45 for CO2 has risen. So all in all he needs the hypoxia to make him breathe. Confusing? Yes! But as we all know, A has NEVER been easy!!!
As well as this, the sleep study showed significant obstruction. Where exactly? Well we are not sure. They are thinking that he is pooling his secretions in his airway and some of this is going into his lungs…micro aspirations. On the video, you can see him moving around and then it is like once they are clear he goes back to sleep. What can be done for this? Nothing really. There is no way to really stop the aspiration of his saliva. Over time can this cause harm? Yes, but it is hard to say how long or when things would get worse.
They also believe there is some floppiness to his airway when he is in deep sleep. Not surprising to them considering he is an ex preemie who has cerebral palsy.
So all in all it gives at least some idea to what is happening, but frustrating because there is nothing we can do for either as a fix. I did ask why the pooling seems to have gotten worse since the fundo. That is if they think the desats during the day are related to this. They don’t have the answer, so I am hoping that maybe his surgeon can provide some input on this when we meet up next week.
I saw ENT again today and he is very concerned about Ashton hitting single digit numbers for his oxygen. He did bring up the trach again but I refuse to talk about this until we have the team meeting.
So that is about it for now….
I can’t believe that there is only two more days until Christmas! I thought that maybe this Christmas A would understand what Santa is all about and the little things, but hopefully next year! I am so excited to teach him all about it and give him the special memories that I have from my childhood. And the added bonus of course will be using it to bribe him to do things!
So the past little while, I’d say almost a month A has been doing two wonderful things. Anyone that has a child with cerebral palsy will totally understand why this is so exciting for us. First he has been bringing his arms/hands to mid line and getting his hands to his mouth. This is HUGE for a child with CP as severe as he has. And of course with my new camera I was able to catch it all step by step! Don’t get me wrong, he has been doing this for quite a while but not as much and not with as much control as he has now.
Now saving the best for last. Up until this past few weeks A never held anything. And if he did it was not for long at all. His hands/fingers would be fisted and you would have to open it first and then give him what you wanted him to hold. Even then you would usually have to close his fist and wait till he got the idea. The things that he DID hold had to be small and basically rounded so it was easy. Well now he holds pretty much anything that you give him! He reaches for everything while he is on the floor and when he isn’t able to get it he gets VERY frustrated and upset. NOW, the most exciting part of this whole idea of holding things is that he now opens his thumb and index finger when you are passing him something! And this occurs EVERY SINGLE TIME!!! This is more than HUGE because normally children with severe CP have stiff hands that are turned inwards. The fact that he is able to relax enough to do this is just out of this world! I am SOOOO proud of him and what he continues to accomplish.
Okay so here I am holding up the cord to hand it to him and you can see how he opens his fingers…
Working on getting grip of it…
Pulling it up…
And there we go!!!!!!!!!
Just one amazing kid.
Last night daddy, A and I went out to get a few things from the store and I ended up buying A the first years reclining feeding seat. I should have bought this a LONG time ago but I wasn’t too sure how well he would sit in it because it didn’t look like it had much support, but it is absolutely awesome! Thanks Billie for recommending this seat!
A is now able to sit right on the floor to play and also can sit at the table with us! If we had of gotten this seat for him six months ago there is no way that it would have worked because he always needed to be reclined, but now he sits great pretty much straight up!
This was late last night after getting in and setting it up…
This morning while mommy was getting ready…(can you tell he LOVES the Backyardigans?!)
This afternoon I got A packed up and we headed over to spend some time with Sean. My mom works with him and has for years. He is 21 years old and has cerebral palsy as well. He is an awesome guy and he had so much fun with A!
A was pretty grumpy when we got there because it was his nap time so I laid him down for a sleep. Sean kept asking if he could hold A when he woke up. As you can tell by the pictures, he did a great job!
When he was holding him he said that he wanted a baby and then said that he wished that A could live with him. LOL
When Sean’s mom came home from work she was holding A and Sean just wanted to keep making sure that she was doing it right. He kept telling her to “be careful” over and over.
Well we are still a pretty sick household here! A is on day 11 and mommy is on day 6. I never understand how we get sick because I am constantly washing my hands and using sanitizer. But it just goes to show that you can’t kill every germ that comes your way!
I had to post these next two pictures because they are just way too cute! Now anyone that knows us, knows that the dogs are NOT allowed on the furniture. They are very good about not getting up but lately Cujo has been doing some sneaking. I have come home a couple of times to find hair on A’s blanket. Well the other day I came in and he was sound asleep so I had to grab the camera…
Yesterday A had his two year check up with growth and development. The doctor that he sees is absolutely awesome and I always am happy to go and happy when I leave. He was very happy with A and the progress that he has had since he last saw him six months ago. Of course, six months ago he didn’t have his cochlear implant and that has brought him so much further.
The first thing that he always says is “so….brag about A.” I have gotten good but I admit the first time that I met him and he asked me I started crying.
I admire this doctor because he is honest and to the point. I was asking him his thoughts on ABR therapy and hyperbarics and he said “if it sounds too good to be true, than it probably is.” I am always looking for ways to improve A’s life and have done tons and tons of research into many different things that I would like to maybe try. However it is hard when some of these things are huge amounts of money and there is no guarantee that it will benefit him.
The power wheelchair was brought up again and it looks like he really will be going into one next year. I will be calling kidsability to get A into the seating clinic for this as well as trying to find him a suitable seating device for in the home. I am having a heck of a time with him now that he is older and wants to go, go, go. The only place here that he sits properly is his swing, however he is getting to the point where he is almost too big for it. With hip and spine issues with kids that have CP I have to worry about his posture constantly.
I told him that I really worry about the future and what A will be like. I always wonder if he is going to be the kid with CP but totally there and right on target with his friends or if he is going to be the kid with CP that is 15 but at a much lower age level. I know that he can’t tell me but I admit that is one of the things that I think about all of the time. That is the one thing that really sucks about cerebral palsy. The waiting game….
All in all it was a great appointment. I had a call the other day from his secretary to remind me about the appointment and to add more time because we would have to do the Bailey’s test. I was not impressed. I think that these tests to see where your child is developmentally are just crazy to do for a child that has cerebral palsy and is deaf. At the end of the appointment with him he said he would see us next year. I asked about the Bailey test and he said “nope, you are not doing it.” Right on!
We headed up to the NICU to see if one of A’s nurses was on, but of course no luck again. We haven’t seen her in a year! If you are reading this Marg, we try and see you all the time and miss you! We did get to see Joyce although A was upset with her for leaving him. hahaha
We really miss having Joyce around. She is absolutely amazing and one of the most caring, loving nurses that I know.
And now for my little man. As you can see the sickness doesn’t stop this kid from smiling!