Ryan was born September 10th 2006 at 28 weeks. In September 2007 he was diagnosed with mitochondrial disorder. Sadly this little guy lost his fight to mito last night at 7:20pm at home with mommy and dadddy. Danielle and Kevin my thoughts and prayers are with you at this time. Rest in peace little guy!! You are a beautiful angel.
Well for starters the weekend was pretty good. Daddy and I were able to take our little man out of here yesterday on a day pass!!! So we left here about 1pm and headed home. He really didn’t know what to think about being in the vehicle…but after three months who can blame him? When we left here his shoes would not even go onto his feet! LOL So we know he has grown!
I’ll tell you though, I was more nervous leaving here yesterday with him than I was the day we left the NICU after eight months! I was so afraid that he was going to have an episode in the car but thankfully he didn’t.
It was very cute to see how he reacted when we got home. As soon as we pushed his buggy into the living room he was going nuts!!! And of course daddy got him a big huge TV so that was put on right away for him and he thought it was great!
We got ready to head over to my aunts for Easter dinner which was nice because we have a nighttime routine of Ashton having a shower. He loved it! When I was drying him off he started to gag and went very off colour and into one of his fits. It didn’t last long but it really freaked me out.
Everyone was pretty surprised when we walked into my aunts house with A! We had a great dinner and A slept for a couple of hours because he had not napped all day. We had to be back here for 10pm but traffic was absolutely insane that we didn’t get here until about 10:30pm.
Today…I spoke to his complex doctor and told her that I wanted to give the botox a try. Well botox is tomorrow!!! I was told to go down to IGT (where they do the botox) to sign a consent. When I got down there I told them that I wanted to talk to the doctor that would be doing the botox before I signed. I don’t think this is a common request because she wasn’t too thrilled about looking up who was doing it and then asking when he would be available to speak to me. I ended up going back about an hour later and he was great. He explained everything again to me and did happen to tell me that botox is not usually used for pooling of secretions. What?! The docs told me that this was a thing that is common here. Well he told me it is common to use for drooling but not for pooling. So A will be there first case like this…he did however say that it makes sense that it COULD help so I am holding onto that. I have to say though that I am VERY nervous. A couple of times today I almost thought about cancelling it. But I know deep down that if I didn’t at least try it that I would always wonder what if.
He will also be getting a long awaited CT scan tomorrow since he will be under a general. The docs aren’t thrilled and keep saying it won’t show them anything but I cannot stop wondering so it needs to be done.
I had another genetics doctor come in to see me today and meet A. She is actually a neuro genetics doctor which kind of fits him better I think. She was also very kind and caring and took her time. She looked A over for about five minutes and just watched him. Well her conclusion was that his issues and what she sees are not related to his prematurity. I asked her about the CP diagnosis and like she said, CP is such a wide range that it easier to diagnose that anything else. She really doesn’t feel that this is what is going on though.
She said that she was happy with the testing being done but that she does have some other ideas if everything was to come back okay. She did mention a spinal tap to check his neuro transmitters as well as a muscle biopsy. And the last thing she mentioned was mito. Hmmmm interesting is all I have to say. Scary too.
So please hope and pray that this botox does the trick for his nasty nasty spells. I don’t have high hopes but somewhere inside I still have some left….
Well nothing new is really happening here. I went home on Thursday night and didn’t come back until Sunday morning! I wasn’t planning on staying that long but the nurses that I had on were wonderful and knew that I needed the break. It will be eight weeks tomorrow that we have been here! And really we aren’t much further ahead than when we started. The only real change has been the fundo and g tube placement. I have to tell you again how impressed I am with how well he is doing with this! I was so anti fundo and it has truly been awesome!
I was able to book the photographer and the DJ while I was home (whole reason I went home) so I don’t have to worry anymore about that. I can’t wait until the day that I get married!!! J and I have been through SO SO SO much together and we have been able to overcome all the bumps in the road. And to top it off we have the most AMAZING son in the world who has changed our lives in ways that we never could have imagined!! Good and bad LOL
So I am waiting to see IGT to discuss more about the botox. And there is one guy in particular that I know in IGT and he is NOT going to be anywhere near A for the botox. He had issues putting a gj tube in and *I* had to tell him that it wasn’t right. So there is NO way that he is injecting botox into saliva glands!!!
I also spoke yesterday for quite a while to A’s nurse practitioner. I told her once again that I would really really like to see genetics. I remember this coming up a LONG time ago when we were in the NICU but it never came to anything. And I have been bugging since we have been here. So finally she agreed to it because there IS the possibility Ashton could have some sort of genetic mutation which means that if I was to have another child they could have the same issues. And I told her that I know a few moms that didn’t get things looked into until they had their second child who started to present with the same issues as the first. I also said that I would be pretty upset if this were the case when I had asked to see genetics many many times. I want to be able to make an informed decision. Now I truly hope that this isn’t the case but maybe genetics might help us lead in a way that could be helpful.
Please say a special prayer for our little friend Ryan…he is on life support and not doing well. He was born at 28 weeks and was just diagnosed in September with mito.
First is Charlotte. She is 8.5months old and was born at 29 weeks 5 days. She is currently in the ICU on a vent and not doing very well. Doctors don’t really know what is going on and I know how frustrating this can be. She is an absolute doll and I cannot stop thinking of her. The doctors have had to put her on a paralyzing agent because she just kept fighting the vent. Cultures so far for any new issues have come back negative which is wonderful!
Thinking of you Charlotte! Get better soon so mommy and daddy can have you home again! And of course I am thinking of you Kelley and Vann!
Next is Landon. He is one month older than A and was born at 30 weeks. Landon is also in the hospital with issues that the docs cannot figure out. He is needing oxygen but his lungs are clear and is running a fever. When I have talked to his mom Jen, Landon and A have many similar issues which makes me believe that I really need to get A in to see genetics. They are awaiting a possible diagnosis of mito which is just heartbreaking. My thoughts are with Landon and his family!
Now for some exciting news, I have gotten a new toy! It is a digital SLR. Canon EOS 40D and I LOVE it!
Well another sad post today. A family from the P2P group that I am part of is dealing with losing their son Luke. He is only four years old and suffers from a mito disease. The doctors and his parents have decided to stop all of his antibiotics and lines so he is not expected to make it through the night. He has been a very sick little guy and has been so tough through all he has gone through. It truly breaks my heart to hear of such a young innocent child having to suffer the way that he is. P2P is like one big family and I hope everyone can say a little prayer for this little guy.
Jaxon (the surviving triplet from the one family I follow) is still very ill. His parents were called to the hospital yesterday and he was not doing well at all. They had to perform chest compressions twice on him. They have placed an external pace maker so that when his heart drops below 92 it will kick in. His parents have decided to put a DNR on him so that he does not have to suffer anymore if his little heart decides to give out. I just hope that this little guy can do a 360 and eventually come home to his family.
Thank you everyone….