Well so much has happened in our three days here that I am just amazed. We came in Thursday night and A was SUPER happy to be here. What a kid! They did the bipap the first night but it did not go as well as they would have hoped so they did give him some sedation. He did about three hours on it the first night. It was great for me, because the respiratory therapist on with him for the past three nights knows him very well.
Friday I came in and they had already done an echo and we headed down to do an upper GI to check his fundo. All was great there. No results as of yet from the echo.
He also started with a fever on Friday and still has it today. So yesterday they did some blood cultures and a urine culture, results will be in tomorrow.
Last night on the bipap they gave him more sedation than the first two nights and he did about 5.5 hours on the bipap with ZERO desats!!! I am thrilled!
He was supposed to go in today for a CT scan of his chest with contrast however it is pretty crazy in the PICU today so they are holding off on that until tomorrow. I had a great meeting with one of the doctors yesterday and he feels that this CT will possibly help A’s respirologist maybe get some more insight. They were a bit iffy about doing it because they have to give him an IV but I told them that I was willing to let them do that if they felt this CT would help them. This doctor has done NOTHING but prove himself to me and I have total faith in belief that he just may be THE one to finally figure A out.
Please keep up the good thoughts and prayers. A is definitely in the right place to be sick but we didn’t come in for that! The doctor two nights ago said to me “this was supposed to be a simple admission for bipap but yet it seems so complex.” That is my boy!
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 much new going on around here. Mommy and daddy have both been sick with sore throats and head colds but thank goodness that A has not got it! *knock on wood*
I am pretty nervous when it comes to getting sick now that he had his last ICU stay on the vent. I pretty much wipe down everything in our house with lysol wipes like three times a day as well as spraying Lysol.
Still having big time issues with the seating clinic and not being to find seating that works for him. It is SOOOO frustrating!!!! We are now trialing our second wheelchair which is called Kid Rock. It is pretty neat as it is the only chair that allows movement. Basically when A arches the chair moves with him up to a maximum of a 35 degree angle. To get out of it he has to use his stomach muscles to bring it back to sitting. Which I might add he can do!
Other than the same old things are good. We carved a pumpkin last night and daddy is looking forward to coming home from work today and getting dressed up with his little man. Those pics will follow!
I should also add that Stacy, a wonderful blogger who gets a lot of traffic on her site from all kinds of people (including doctors!) has posted a quest for help with Ashton and his spells. She was wanting to post it in the past however with my address and phone number it wasn’t really an option. Now that things are different she agreed. I am hoping that someone KNOWS what he is doing. You never know where answers may come from!
First, a very happy 19th birthday to Aunt Shorty!!!
So I seem to be really slacking on updating this blog, but this summer is just crazy busy so forgive me!
So I had my bachelorette on the 18th and it was fun and all of us had a great time. The only crappy part was, the Friday night that I got there I started with a sore throat! By Saturday night I had a pretty bad cold and my throat hurt just to breathe. I didn’t get ANY sleep and needless to say the drive home on Sunday was long and I just wanted to cry I felt so sick. When I got home I ended up in bed and tried to sleep. A had a good weekend with daddy and grandma and was a good boy.
Monday the 21st I had my four wisdom teeth pulled under a general anesthetic….figured I might as well feel like crap for everything all at once! If I didn’t get them out that day then I was looking at waiting until September and there was NO WAY that I could wait that long. They have been so painful and keeping me up at night. Recovery went very well and I only ended up taking pain meds on the Wednesday. Much easier than I thought that it was going to be!
Tuesday evening (the 22nd) I noticed that A seemed to sound congested. While we were out I picked up some benadryl to give him to hopefully help him sleep. By Wednesday he was VERY sick. He is now on a monitor at night again as I need to know what he is doing. Overall he has been doing pretty good but there are definitely moments where he drops very low and does need some suctioning and stimulation. I just hope that I am able to keep caring for him here and not have him end up in hospital. This is now day 8 for him and he doesn’t seem to be getting any better. I however still have a bit of congestion and cough so I am not too worried at this point.
So since my last update not too much has been going on as we have been kinda trying to recover and get better. It totally sucks being sick! I tried SO hard to do everything right but of course he still ended up getting it from me.
On another note, today was the day that A got his wheelchair. We are trialing it for a month and see how it goes. If I am happy with this one then they will order the same and if not then we will trial another one. I was excited to get there and see this wheelchair and have something for him to finally sit properly in and get rid of this darn stroller that I can’t stand! At the same time it is hard because although we have always known that he would end up in a chair it is reality. I have to tell you though, he sits AMAZING in this chair!!!! We will definitely have to use it a ton more to see how it works and we base our decision on the chair very well.
When we got out to the car and loaded up the wheelchair and his stroller I was okay. It was when I looked in my mirror and saw the wheelchair in the back that I started to cry. There definitely is a process that I will have to go through to deal with this. J and I have both been talking about this wheelchair for a bit and I know that we both hoped that maybe, just maybe he wouldn’t need one. High hopes, but as parents it is one of the hardest things to accept. That your child will never walk.
Anyways, A and I went to the mall afterwards so I could try it out and get a few things done at the same time. So far, no complaints! The only complaint I do have is how many people STARE! It drives me up the friggin wall. Now most of the people that stare are children and really they don’t any better, but it is their parents job to teach them about how kids can be different. When kids aren’t told about things like this then they just don’t know what to think. Well anyways, that is a whole other post.
Daddy came home from work pretty early today and when I heard him come in I went into the kitchen. He looked at the chair and said “wow, his other one didn’t look anything like that.” I said “what, like a wheelchair?” Then his tears came. We hugged and cried together.
Oh where to begin. I am so frustrated. The complex care docs were in this morning and from the way they are speaking they are wanting to get A home. Now this is a great thing but I want answers before this happens. He is being weaned more from his morphine today and will be off it totally by Thursday or Friday. They also ordered that is not on a monitor during the day but only during sleep. I think much of this has to do with the fact that the docs do not want me watching the numbers. I have issues with how low his oxygen has been going for the past few days.
On a good note he has not had any of those crying fits today, last one was last night at 7pm. There goes my theory of it being hunger as his feed just ended at 7pm.
Blue spells still continue. The doctor says that he believes it is breath holding. The nurses on the floor do not understand as they are the SAME as before but worse. I am beyond confused as to why they are not concerned about them now.
Oxygen was discontinued at noon today and when he went down for a nap at 1pm he was satting between 78-84. With blow by he is 99. Why does he suddenly require oxygen while sleeping?! When we came in hospital he was not on it and his average sat while sleeping was 95.
To top everything off I am starting to get sick I think. I have a sore throat and feel sick to my stomach. I am just not in the mood.
Still waiting to see the chest team now as we have dealt with the reflux. (They wouldn’t do the sleep study or see him in the beginning until his reflux was dealt with.) Hopefully they have more convincing info for me then telling me that A is holding his breath.
First here are some pictures I found on my camera from when grandma and grandpa babysat on the weekend….
Hahahaha I had a good laugh when I saw this one…wonder who put his leg like that?
Well today was my birthday and what a day! Last night around 8pm A started to act very strange. It was so weird that even daddy noticed and we were both pretty concerned. He would go very pale and then you could tell that he was refluxing. Next he would go very off colour and then the vomiting started. The first two times were just clear and the third was a huge amount of bile.
By 10pm I was starting to get pretty worked up about how he was acting. I have a very strong instinct when it comes to A and I knew that something was going on. I still don’t know what last night was all about, but I hope I don’t see it again!
Anyways I decided to kick daddy out to sleep on the couch last night. I had laid A in his bed and right away he threw up. With him being sick and acting odd I really wanted to keep a close eye so he slept in bed with me last night. From 11pm until this morning at 8am he had vomited a total of probably 15-20 times. Every single time it was a ton of formula as well which had me pretty concerned. I have to say that he still slept pretty well though considering. He would start fussing and then I could hear his belly gurgling and then he would vomit and go back to sleep.
This morning I had a ton of laundry to do to say the least and things just went downhill. At 9am he normally gets a break until 1pm but because I had run his feed at half strength and 18mls/hour less I decided to run pedialyte. He has only vomited twice today and that was when I had tried half strength formula again. So it is now 11pm and he is still just on pedialyte.
The diarrhea started as well today but thankfully his last huge episode of that was at 5pm. At the current moment he is sleeping on the couch and his nurse is here. I am heading off to bed to get a good night sleep!
We still headed over to my parents for dinner and cake tonight and I got some great gifts!
We got the special tomato brought over today to trial to see if it is something we would like to get for him….of course with not feeling well it is hard to tell if he likes it…
A beautiful smile from my sick little man…
Well today has been a much better day around here. I have still been sleeping out on the couch with A at night but think that tonight he may be okay to go back into his bed and me into mine! He is still very congested sounding and I have him on a half litre of oxygen, sometimes bumping it up to 1litre.
Okay, I have to say thank you to all of the moms that have watched my video and given me their opinions. I have to say that it really varies from person to person! I have four moms saying that it looks like a seizure, I had two say it looked reflux related and a few others that said no to a seizure.
Here is why I do NOT think they are seizures. He spent 227 in the NICU before coming home on oxygen, g tube feeds and an apnea monitor on Jan23’06. The day after coming home he had one of these “spells”. (He had probably five in the NICU) Within the next four days he had a total of 7. He was readmitted and ended up in the PICU on a vent. He continued with these spells even on the vent. At one point they even called a code blue because he was going so low in oxygen sats and heart rate.
***These spells that occur, he drops his sats to the 20s along with his heart rate. He goes completely off colour, there is no chest movement and he goes stiff. There is no way to get air into him…when they would bag him it would just pop off.***
They diagnosed him with ALTES-apparent life threatening events due to reflux. They then changed his g tube to a gj tube. On Feb23’06 he came home again. He went all the way until July’06 and had two spells in one day. We just happened to be doing an oxygen trend and his sats were 23 and heart rate of 42. Took him to emergency but they didn’t do anything.
He went all the way until April 4’07 when he had another one. Then June 13th’07 another one. This one was at a hospital that has a wonderful reputation. Once again, nothing was done. Now this past Wednesday he had another one. This one was just over three minutes long. I called 911 he was taken in and the doc is saying seizures. I have a VERY hard time with this b/c my gut says it isn’t a seizure. I mean I have had about ten doctors see him do these spells and when I would say “seizure” they said NO.
SO, I guess my questions are these. If it IS seizure then why have SO many doctors said no? If it is seizures then why did the spells stop after the gj placement for so long? If it is seizures how come nothing has shown on the two eegs that he has had? If it is seizures then why does his oxygen go so low? I have heard that it is not common to go off colour with seizures, let alone down to the 20s. I also had one mom tell me that her son was blue but was still satting in the 90s.
My gut tells me that it is something to do with his reflux and/or airway. His last bronchoscopy was in February of 2006. I have been asking and asking for another but never got anywhere. This was until last month when I met a new doctor. He told me that he would be arranging a bronch, a sleep study and a feeding study. Well it has been six weeks and I haven’t heard a thing.
We will also be seeing a new neurologist in the beginning of December so maybe they will have some thoughts about what could be happening. Two neurologists that I have seen have both said no to seizures as well. I am just so frustrated with all of this and I wonder WHY doctors are so nonchalant about what is happening…
Now to leave with some new great pictures…
If ANYONE has any ideas on what could be happening PLEASE send me a message. At this point I am willing to look at everything!!!!!! And also, is a bronch enough to tell if it IS airway related or is there something else I should be asking for as well? I might as well try and get all the things done at once….