Where to begin? My little man is sick. Yesterday was a horrible day. He had a fever again, was requiring oxygen and cried/whined the WHOLE day. My heart was feeling broken in two. I can’t stand to see him suffer. To be so upset when he is normally the happiest boy that I know.
After getting home last night, we got a phone call at midnight. It was the ICU doctor calling to tell us that A had an episode that required some bagging and chest compressions. I got off the phone with him and just cried. I just can’t take this.
4am the phone was ringing again. It was the ICU doctor telling me that it happened again, that they were going to keep him off of the bipap and keep a close eye.
Our team meeting today was with all of the doctors involved. I found out then, that A actually flatlined during his episode at 4am for about 20-30 seconds.
It looks like we will be going the route of the tracheostomy.
I am scared right now. Please pray for A to have the strength to fight this. The will to go on. Please pray for the surgeons that will perform this. Please pray for myself and for Jeff to be strong and know we are doing what is right for our boy. But most of all, pray that this helps A.
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.
Not too sure what is going on exactly with him but it started last night after he went down for bed. I finally got to bed at 1am and then the alarming started. J was still up so he kept going up to check on him. Eventually at 3am A was having a hard time keeping his oxygen saturations above 70 so he got me. I was a bit nervous as he was just having such a hard time breathing. I had said we should probably take him to the ER but we all know that it just doesn’t seem to ever work for A. I mean how much faith can you have when at our last admission with “pneumonia” and over twenty pokes for blood and an IV the next day we are told by HIS doctor that he doesn’t have pneumonia. Then the radiologist read his x-ray and said possible. Just crazy.
So I went to our basement and pulled out the oxygen. At 1L he was staying in the 90s as long as he was relaxed and/or sleeping.
Today he hasn’t been much better but holding his own. I will see how tonight goes and then take him to his doctor tomorrow if things are not any better. Please pray that this doesn’t turn out to be a hospital stay!
Well my little man is admitted yet again with pneumonia. Here is the update I did for my one group:
Well I got to emerg and when we got into triage they immediately hooked A up to a monitor. He was saying 36. The triage nurse just about jumped out of her clothes and within minutes we were in the back.
Chest x ray and bloodwork was done (which by the way took SIX pokes!)
At 5pm I kept telling them that I needed to go home at some point to get his food. They were telling me to just give him apple juice or milk!!!!!!
Anyways, they came back and told me he has pneumonia in the lower left lobe.
This is when they started with an IV. After me bawling my eyes out because I HATE when he is admitted. Anyways after seven tries I was ready to BLOW UP!
I told them I was leaving to get his food b/c at this time it was after 6pm.
Got back and he was done with the IVs after two more tries. So it took them 9 tries! You should see his poor arms!!!!!!!
Well we get up to the floor and guess what? A nurse untaped his IV to check it and pulled it out!!!! So once again my poor exhausted boy was taken into the room again. Three more goes.
I am home to sleep. There are two nurses on tonight and they only have him and one other boy.
I just can’t believe this is happening AGAIN!
Please pray that A can get through this without being intubated like in August.
Well A has come off of the vent (was not a fun time!!!) however he is still sounding the same as the day that he was intubated. The doctor from ICU switched his antibiotics yesterday as he has not gotten ANY better and is needing a TON of suctioning. He is having tests done today for Chlamydia psittaci. Long story short, the lady who lived where we are before us must have had two or three birds. It was NASTY to the point we washed the walls, ripped out carpet and replaced it and so on. Well it was the Tuesday A was taken into the place and then Thursday morning he woke up with the fever and then went downhill. Because he has not gotten any better the doc feels it is worth a look into. I was really hoping to have him home by now….but I guess it might be a while. The doctor said yesterday that he “may” have to reintubate. Fingers crossed we don’t go there. The other interesting thing the doctor said was that sometimes kids with neuromuscular disorders and so forth go onto the vent and when they come off have lost their muscle tone that was there. Meaning that this is always a possibility as we are waiting on genetics still. So the suctioning could become a daily need. Praying that it won’t be.
Well nothing has changed. He is still intubated and heavily sedated. Swabs were done yesterday to see if anything shows up or grows. I was told yesterday that his lung x-ray was patchy and they are treating as if it was bacterial pneumonia. However they do think if it is then it is viral. The doctor also said that his x-ray does not really match how sick he is. So no real answers. Thanks for all the thoughts and prayers.