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.
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….
Well after my last post I ended up meeting with the chest doctor that I had been wanting to see along with one of his collegues and my complex care doctor. I also asked the charge nurse to come with me because she was with A the other day when he had a desat of 11. To be honest the meeting didn’t really help me much but at least now they know how I am feeling and that I am not just going to sit here day after day with no answers. I asked the chest team what their thoughts were on ILD but they didn’t feel that right now it was something to look at because his CO2 levels have never really been a huge issue. Add on to that, the only way to diagnose is to do a biopsy.
Later on I went and met with patient rep to discuss my issues and problems. I had ended up calling them when A was in one of his little episodes and I was at my wits end. I cannot keep on going watching him suffer and struggle. I had my social worker come with me and she was able to take notes and help me out a bit. After hearing my story he told me that he thinks that I better put on my seatbelt and hold on for the ride. Never heard it put that way before! He was very wonderful to talk to and I am hoping that his idea is going to help out a bit. The plan that we came up with was for me to write out a list of questions that I have for each doctor that I am dealing with. I did that with my social worker today and we gave him the copy. Tomorrow he will be distributing the list to all of the doctors and then next week we will have a team meeting. He will come along with me and he said that there will be no going around in circles and all of the questions will be answered. The reason for him giving them tomorrow is so that they have time to think about them and put them down in writing for me as well. This way there cannot be any confusion with what is said and what is happening.
So after this I come back upstairs and find out that A is going for a sleep study! Six weeks to the day that we came in for one. So that was done last night and I was really not thinking it would show much. However I stayed down there for the first few hours to watch what was going on. A was sleeping and satting 100% but his CO2 level was between 70-80. The sleep tech then came in and turned off the oxygen to see what would happen since the doctor wanted it done off O2 anyways. Well after a few minutes his sats would drop but so would his CO2. So then the oxygen would go back on and up would come his sats and CO2. Strange. Just automatically made me think to the meeting where they said that they weren’t concerned about his lungs because his CO2 levels have not really been an issue. I have been dying today to find out what it showed but looks like it will be tomorrow. I have to admit that I am kind of scared as to what it will show. I just hope that it will be an answer to all of the issues that we have been having.
A and I had some fun today and went and played bingo with the Toronto firefighters. There was really cool prizes and it was nice to be out of this little room!!!
I am off to go sleep in the playroom now…..fingers crossed this sleep study will give some insight!!
Well we had a pretty rough night here last night. The nurse came on shift and A was dropping his heart rate consistently. During sleep his heart rate is usually about 90 and for the past couple of days has been 70s. Even when awake it has been low. I am concerned because I know that it isn’t his norm. Anyhow, the monitor kept ringing that his heart rate was irregular and he kept on having PVCs (premature ventricular contractions.) The nurse came over and said that she was going to listen to him because it probably wasn’t reading right. I told her he was sound asleep and this was NEW. She told me that didn’t mean anything. I then looked at her and told her not to pull attitude with me already because I wasn’t going to put up with it and that he has been on a monitor long enough for me to know something was off. I left crying my eyes out. When I went back up about a half hour later he was still sleeping and she had paged four different docs because she was worried. One came in right then and A started dropping his heart rate to the 40s and 50s over and over. It was ringing irregular again and I was standing at the end of his crying. I was very scared and didn’t know what was going on. I got even more scared when they did a stat call for the IV team. The doctor was worried that something might happen and she wanted an IV ready. I had to leave for the IV and when I came back they were hooking him up to the ecg machine. Of course by this time he is screaming and wide awake. His bloodwork came back with CO2 levels of 76 so they ordered some more. It had to be done twice as the first one clotted. I felt like the biggest piece of shit for what he was going through. I just don’t know how much one kid can take!
Today he had a few more episodes where he is real weird acting and screaming and crying. The pain doctor came in and thinks he may be having withdrawals from the morphine since it was stopped so suddenly. He said that it wouldn’t cause his heart rate issues but thought maybe his screaming and blue spells could be. After talking to the complex care team he disagreed on the amount so we are starting with lower doses every four hours.
I just feel so helpless and frustrated. I wish that A could tell me what was wrong. It totally sucks being a mom and not being able to help your child.