Well this is now A’s new website. It is a work in progress so be patient with me. I have a web designer working on it for me as well. As you all know, I would really appreciate if you do NOT add this to your blog list. There are reasons I had to go private before and I just don’t want certain people finding this new site. That is why we are now referring to my boy as “A”. So if you have A on your blog list, just leave his old address listed as I do not want this listed anywhere. SO PLEASE DO NOT HAVE THIS AS A LINK ON YOUR PAGE!!!! Thanks everyone!
So it has been kind of crazy around here once again. On October 16th my little man was really struggling in the morning. So much that I really thought that he was possibly heading into respiratory failure again as he did he March. By lunch time I was nervous so I took him into his doctor. I was so positive that we were going to be admitted that I packed all of my bags and A’s bags before heading. He was requiring oxygen at times and was struggling to breathe.
So we got him into the doctor and he was NOT concerned about him! He said that his throat was kind of red and irritated so he placed him on an antibiotic to be safe and then sent us for an x-ray.
Saturday morning (the 17th) his doctor called to tell me that his x-ray actually looked pretty good. I couldn’t believe it. Friday night was HORRIBLE. A had to sleep in his chair and every time that he fell asleep his sats would drop to the 70s and stay there. If I woke him up he was above 90. I cried and cried because I felt really bad for him suffering, but I didn’t know what else to do for him. I told his doctor that I was really angry and that I felt something more was going on. He told me if I was that worried about A that I should take him to the ER. Ummm that is why I brought him to see YOU, so we could avoid the ER!
Anyhow, on Tuesday the 20th we had an appointment anyways with his respirologist at Mac that I absolutely LOVE. It is the vent clinic that A is now under even though he isn’t trached.
We did a cap gas first which showed that his CO2 was at 54 and his O2 at 75. He was very junky and had needed a lot of suctioning over the weekend. They did swabs for viruses and then his swab to check for pseudomonas.
He wondered why A was on the antibiotic that he was on and stressed that when it comes to A that doctors really need to be more aggressive. He has very crappy lungs and anything can happen. So he placed him on cipro (in case the pseudomonas was active) and on prednisone as well as many extra breathing treatments.
I felt MUCH better walking out of there because I feel like this doctor is so PRO active with A. It is about time that someone really cares for this kid and his well being!
So A and I spent just over a week sleeping on the couch together and trying to keep him out of hospital. As of today, he is doing wonderful!
On another note, I really need people to send lots of love and prayers to Auntie A (my sister in law), my brother and her family and friends. As most of you know, about 18 months ago she was diagnosed with cardiomyopathy with a heart function of 20%. She has stayed so positive and strong that it is just amazing!
Well for about the past three months she has been telling her cardiologist that she has severe stomach pain, is nauseous 24/7 and cannot eat. He told her that it was probably her GI issues/gallbladder. Twice she almost had her gallbladder removed which would have been for NO reason.
Long story short, she ended up in hospital on the 5th of October after going to a class for people with heart conditions. There was a pamphlet given out with symptoms of heart failure. She had them. These were what she had been complaining about to her doctor for months. It was then she found out that she was in severe congestive heart failure.
October 12th she was transferred to Toronto General. It was there that she started to really rapidly decline. Last week she was officially listed for a heart transplant. However with her poor days they just couldn’t let her go as she was.
On Friday October 23rd she had a code blue called. I went and saw her on Saturday and she was HORRIBLE. I couldn’t believe how much she had deteriorated since I saw her last which was only four days prior.
Sunday it was decided that she needed to have the LVAD (left ventricular assist device) placed. They were hoping to avoid this until this coming Friday because they didn’t want to do the LVAD and a heart transplant as it would be very hard on her. However a heart had not come yet and she could not keep going the way that she was.
I was up at the hospital last night to see her and spend some time with my brother. She was very tired and in a lot of pain. The things this girl has gone through are just incredible. Her fight is inspiring to say the least. Please keep praying for her and all who love her.
A quick update on my little man. We had a heck of a night last night and I think I had about an hours sleep in total. He was fussy, feverish and just not feeling well. I was happy that we had the doctor today.
Grandma was here today and I think for the first hour he just whinned constantly. Not happy at all. It is so hard when they can’t tell us what is wrong and how to help them.
We took A to his doctor this afternoon and he has an ear infection and post nasal drip that has caused a lot of puss and obviously pain in his throat. He was put on biaxin and if his breathing isn’t better by Friday he may be admitted to be put onto IV antibiotics. Fingers crossed that we won’t end up there.
I was able to have a nice long nap tonight from 5-8pm and the nurse is here tonight. Catch up on some much needed sleep!
After one dose of antibiotics, a nice long nap, some advil and a shower…
Well my little man is still not well. I will back up to Monday night. So the new tube was placed on Monday and he had the fever all day of 104. By the night it had gone down so I was happy. Joyce didn’t end up coming so I was kinda bummed about that but hoped for a good night.
WELL, it was far from a good night! A was just not able to sleep at all and was not a happy boy at all. I would have to go in there and hold him for a bit and then put him down, turn on his mobile and run to bed to try and sleep for at least thirty minutes while he was calm. He would end up fussing so much that he was turning right around in his bed. This went on the whole entire night. By 5am I could barely keep my eyes open. He was content enough once again so I headed back to bed. Well he must have been moving like crazy and I just didn’t hear him. Daddy got up to get ready for bed at about 6:30am and I heard him laugh. When he came back in the room I asked what was so funny and he said that A was right turned in his bed underneath all of his toys! Of course he didn’t get a picture before turning him around.
So daddy left at 7:30am for work and A was fussing a little bit but I left him to see if he would go back to sleep. It only lasted about ten minutes so I went in there to get him up. He felt VERY warm to me so I put him into our bed and took his temperature. It was 106.4! I almost had a heart attack! I was panicking and didn’t know what to do. I gave him some Advil and then wiped him down with cool cloths. I waited about thirty minutes and took his temp again. Same.
Anyhow, at about 9am it was down to 105.2. I called the doctor when they opened and asked the secretary to talk to him and see what he thought that I should do. I waited and waited and finally I called there. He had said to keep giving A lukewarm baths and keep up the Advil and Tylenol. He also said that the antibiotic would not have kicked in yet. So I waited it out all day.
A was fussy and would not sleep. I don’t even know how he stayed awake for as long as he did. Finally at about 4:30pm he fell asleep. He didn’t end up waking until about 8pm. I laid beside him and he smiled at me! I could hardly believe it. He was in a much better mood and when I took his temp it was down to about 101. I was so happy!
Joyce came at 10pm and A was okay for a little bit, but you could tell that he was exhausted. She ended up putting him to bed at about 10:30pm and he went right to sleep.
So last night I heard A a couple of times and that makes it hard for me to sleep. I know that Joyce is great, but when your baby is sick it is hard to ignore. When I got up this morning she had him up and he was not a happy boy. She said that he didn’t have a very great night.
She left at 8am and so did daddy for work. I took A’s temp and it was fine. At about 8:30am I got him to sleep again and he didn’t wake up until after grandma got here, it was about 10:30am. He still was not happy and I knew that something was happening. He just wanted to sleep every time that he got up. He did end up sleeping for a good while on grandma.
He has had a ton of his dystonic movements today and it reminds me of when he was having the adverse reaction to the artane before. Now I know that his dystonia will act up more when he is sick, but this is just nuts! Grandma left at 2:30pm and until about 9pm all A did was cry. It was so hard to watch him so upset and yet there wasn’t a thing that I could do for him.
I am wondering if he is having a reaction to the antibiotic that he is on but I don’t really know. There is so much info on the Internet that it is silly for me to really try and get answers on here. A is not the average child and he is so complex that it is always difficult to know what is going on with him. I will have to call the doctor tomorrow and see what he thinks.
He fell asleep at around 9pm and he is still asleep. I’m not even going to bother waking him to give him his puffers. He needs to sleep. When he gets up I will give them to him.
SOOOOOO it has been a long day. I just hope that he gets better. I hate to see him this way. So frustrating and heart breaking.
Now some pics…they start on Sunday night with the bottle! 🙂
Oh, and STILL no vomiting!!! It has now been about 80 hours!! (He did throw up a bit of mucus last night but that is it!)