Well A went into his procedure yesterday at 2:15pm. He was given a general anesthetic and then had botox injected into four of his saliva glands. They also did a CT scan at the same time of his lungs as I wanted this done. He did VERY well and I am so proud of him. I went into recovery about 4pm expecting to be sitting there holding him for a couple of hours but we were only in there about fifteen minutes and he came back up to his room. He was smiling and doing wonderful!
When he went to sleep last night he was satting in the 70s so I started getting worried because this isn’t typical for him to stay there constantly so I took his soother out and flipped him to his side and he was fine. He stayed at 90 for pretty much the rest of the night.
I haven’t noticed any difference at all yet with the saliva glands, but the doctor said it would be a couple of days. Fingers are staying crossed!
As for the CT, all the pulm doctor said was that there was some chronic changes but they were probably due to aspiration. Probably?! That isn’t a good enough answer for me but that was all he had to say. I will be speaking to someone else tomorrow.
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….
Okay a small update. I received the results today from A’s wash that he had of his lungs on Tuesday when they did the scope. He has a lot of lipid-ladens in the macrophages of his lungs. In English this means fat. Normally there is zero in a persons lungs however A had 40%. This is huge. So what does it mean? Well it proves that A is refluxing and then aspirating into his lungs. SOOOO I am much more comfortable now doing the fundo then I was even yesterday. The only way that we can give his lungs the chance to heal is to do the fundo.
Now, I spoke with the surgeon tonight and their stats say that there is only a 70% chance that the fundo will work for A. In neurologically impaired children it is lower. Of course there are other risks associated with it as well but we are speaking life or death in this case. Easy choice. As for open or lap he did say that they prefer lap. He said that there is less chance of adhesions and most surgeons prefer it this way.
The other thing that was said, is that they will put in a g tube and take out his gj. This kind of has me very nervous as it has been two years since he has fed into his stomach, not to mention the fact that he had these BIG spells everyday with the g tube feeds. However the surgeon did say that he has never seen a child have a fundo and need the gj tube. I laughed and told him not to say that yet! He did mention as well that this procedure will be a bit more because they will have to probably sew up where his gj is and do another incision for the g tube as the wrap will probably pull his stomach up too high.
As well I was told that A’s sodium is very high and this concerns them because he also has a low urine output of .3%/hour. So over the weekend I am to try and give him about 200mls of water to see if that brings down his sodium level.
I will be meeting with the surgeon that is on next week and have my decision ready. No date as of yet. Keep those thoughts and prayers coming!!!! They have worked for us so far!!!!
First I want to say thank you to everyone that has been sending their thought and prayers A’s way. It really means a lot to me to have so many wonderful people supporting us and pulling for him.
I should also add here that I don’t think I was very clear about everything yesterday. Besides the spell that he had (which we don’t know if they are seizures or not) A has been very congested and having difficulty breathing. He is being treated for aspiration because of what happened Sunday night. With the chest x-ray looking fine it is hard to know what is happening. Today I was wondering about RSV but I was not about to take him to the hospital just to do a swab when he is NOT in any shape to go out.
So it was a pretty long night around here last night. I pushed our loveseat up against our couch so that I could sleep beside A all night. Or I guess I should say so that I could lay beside him all night! Anyways, he was doing okay off and on until about 2:30am. He was very irritable which in turn causes many more dystonic movements. At 3am I decided to give him a dose of versed. I have given him two doses before here at home about a year ago when he was sleeping like crap. I know back then that the effect was very quick but did not last very long at all. I was hoping last night that it would just take the edge off of him enough that he could get some rest.
Well within five minutes I could tell by his eyes that it was starting to affect him. Then came the frothing at the mouth and then the blueness to his lips. I turned on the light and grabbed the suction machine to start with that. I was getting a TON of junk out of him. I then cranked up his oxygen to five litres and let him try to get some colour before going in to suction again. The colour wasn’t happening. I went in and woke J up because I was so scared about what was happening. He immediately came out and we decided to suction again. Throughout this he was not fighting me at all and more or less was acting as if the suction didn’t bother him. Anyone knows that this isn’t normal and therefore had me even more scared. I really started to panic because I noticed that even his fingers and toes were blue. J went over to the oxygen and noticed that the end wasn’t even hooked up and must have gotten knocked off when he came out of our room. Within a couple of seconds A was getting pink again. For about the following hour his breathing was very off and he just was acting strange. The only thing that I could think was that it had to do with the versed. I won’t be giving him that stuff anymore! I have to tell you that at one point J and I really thought it was the end. It was almost as if A’s body was giving in. Really weird and I can’t explain it well but it was as if life was suddenly in slow motion.
I picked him up and just started to cry. I am so angry that he has to go through this. I am so angry that he is doing this but yet there is no one that will help figure out what is going on. I am so angry that I even have to deal with it. It breaks my heart to know that he is hurting and suffering and there is nothing that I can do to make him better. It just plain sucks.
The rest of the night I pretty much just watched him sleep and breath. Grandma was here early this morning so that I could get some rest. He was pretty restless all day for her and didn’t sleep much. It is so hard to see him sick because he is such a different little boy.
A went to sleep at about 7pm and woke up about 10:30pm. I did a little bit of chest physio and then suctioned before doing his breathing treatment. I got a little smile out of him when I was tickling him which was nice! I got him ready for bed and then put him in his chair for a bit.
He is still very stuffy and congested sounding but looking a tad on the normal side. I tried to shut off his oxygen a couple of times today but he isn’t taking that. The nurse from the oxygen company was here today and she had him hooked up for a while to do the trend she needs. Turns out the hospital didn’t do a printout that we need for coverage of the oxygen so she asked if I could turn it off. The trend they need to cover the oxygen has to be with the child satting below 88. For the five minutes that A was turned off he was around 80-84 coming up above 90 maybe once a minute. Bad news, obviously something is going on that he needs oxygen. Good news, we now will have oxygen coverage for a year.
Are you ready for this?!?!?! I don’t know why suddenly he is like this but I am not complaining!!!
As for the versed, I had a NICU nurse from my preemie group send me this link HERE….makes me really wonder if the whole ordeal last night was from this medication?!
***I have figured out how to load my video onto my computer but now I cannot find anywhere to upload it so that I can send it to those who would like to give me their opinion. Once I figure that out then I will be sending it out.***
Well the whole ordeal started yesterday afternoon. A went down for a nap at about 1:30pm. It was very restless and he just was not comfortable from all the gas that he has been getting lately when he tries to sleep. At 4pm he was awake so I started to get him ready to head over to grandma and grandpas for dinner. When I went into his room to grab his clothes I heard him gagging. When I came out he did a HUGE projectile vomit of formula. Yes, formula. I never understand how he does this WHEN he does it. Anyways, he was happy and smiling after so I just figured it was a one time thing.
We noticed after it happened that he sounded very congested/wheezy and I just thought it was from the vomiting and he still had some in his airway that he couldn’t get rid of.
At grandma and grandpas he was good and the happy guy he normally is. Here he was sitting with us while we ate…
When we got home last night he was fussy and seeming to sound worse. When I put him into bed he had a couple blue spells from trying to breathe. I knew then for sure that something more was happening with him, possibly from aspirating the vomit. J stayed up with him so I could at least get some sleep. Even with my door closed I could hear A in his room trying to breathe, it was SO loud.
Finally at 3am J was able to come to bed. 3:30am I was up with A. I called and left messages for his physio, OT and speech therapist to tell them that I was cancelling their appointments. Liz came (his dietitian) and he is now 24lbs3oz. I had told her about his vomiting and how he was sick, had a low grade temp, blue spells and asked if she thought he could have aspirated. She said it was possible. I called his ped and got him in to him for 4pm. Well turns out that A did aspirate. He is now on steroids for four days and an antibiotic for ten days. We need to be on the safe side so that it doesn’t turn into aspiration pneumonia as that would be an absolute nightmare for him. We will be going back to the doctor Thursday and hopefully he is better or else he will be admitted.
When we got home I took his temp again because he felt so warm. It was 105! I gave him some advil, used a cool cloth on his head and cuddled with him. As of now his temp is back down to normal and his breathing is a tad better. His nurse is here tonight and she said he still sounds very tight and wheezy. It is going to be a long night I am sure but I am off to bed for the entire night!
My poor baby…
First some pictures of yesterday when A was playing with Dawn…
So today was the big day where A FINALLY got to see a lung specialist! I still cannot believe that he has never had to see one considering that he came home on oxygen and has had so much trouble with his breathing and blue spells.
Waiting for the doctor sitting in a gold seat from Maple Leaf Gardens!
Anyhow the doctor was very great. He had read over A’s file so he knew some of his history to speak with me. One of his biggest concerns is the ALTES that A has had in the past. Again, FINALLY someone that cares about my little man not breathing besides me!
After listening to A and speaking to me for a good while, asking questions and talking things over he has decided on a few things. He does not believe that A has allergies or asthma. This is a very good thing. He also believes that a lot of A’s issues stem from his upper airway and the fact that it doesn’t have muscle to help control swallowing and maintaining an open airway. This would explain his blue spells that he has and the big events as well. When you add reflux to the issue it can make things worse which is obviously what is happening.
When talking about A’s sleeping it is obvious that he may have some issues with sleep apnea. He is going to be ordering a sleep study so that we can see what exactly is going on and whether or not it is obstructive. He warned me that A is at risk for this either now or later because of his past history so it wouldn’t surprise me if that is what is happening now. I am actually kind of excited about the sleep study because I am sure that it can show US what is happening at night.
Second A will be having a feeding study. He wants to know if A is aspirating into his lungs which can cause a ton more lung problems for him. I was supposed to have a feeding study done at Sick Kids before this appointment but they decided to call me last week and tell me that I could go to Mac for that and they were not going to do one. He told me that he will put in the request again.
Third, A will be having a bronchoscopy. The last time that he had one of these was in February of 2006 while in PICU. However this being said it was done by an ENT that has totally messed up with A’s files. I found out today that the report he did after the surgery in December of 2005 while in NICU that he in fact says he never did a laser surgery. WHAT?! I remember EVERYTHING about that day and the week after. It was December 16th 2005 and he came out on a vent. His airway and tongue were SO swollen that he ended up on the vent much longer than anticipated. Anyways I am just blown away that a surgeon doesn’t know what he did or if he did it. Obviously the ENT that we will be seeing is NOT this guy and hopefully the one that did A’s cochlear implant surgery! It would be great to have him as well because he saw what A does while in surgery and in recovery. He told me on June 11th of this year right after surgery that he was worried and he would get to the bottom of it. NOTHING was done. Ashton even had one of his ALTES in the hospital yet nothing was done. Oh sorry, they suctioned him.
Now to the scary part. I will be speaking to a surgeon after all tests are completed about a possible tracheostomy. Hmmm I’ll tell you I could feel the tears well up in my eyes. I can’t imagine WHY my little man has to go through one thing after the other. A trach was actually brought up in the PICU back in February of 2006 but because the spells stopped after the gj they decided against it. I had blocked it from my mind and never looked back.
Well gj tube is still in 20 months later and yet A has still had ALTES. Yes they are WAY less frequent but the happenings are scary enough. It is like the doctor said, we are very lucky that A has recovered on his own each and every time that he has had one, but what if he didn’t?
I think he liked this doctor too!
After that appointment we did some of the usual shopping at the hospital and grabbed something to eat. At 1pm we met with his audiologist for some fine tuning on his implant. He did wonderful in the sound booth turning to sounds at even 20db!!! Everyday I am more amazed with this implant and what it has done for him!
Back at home wearing his new shirt that grandma bought him. My little future NHL star!
One day at a time….
Well we are home from Toronto Sick Kids. We got in late last night (about 11pm). So I guess I will start at the beginning….
A the morning of surgery at home. He doesn’t look too impressed to be woken up at 5am!
We headed out of here at 6:30am on Monday morning so we could be at the hospital for 9am. Well, that didn’t work quite as planned. As we came up to the 401 we noticed that the traffic was backed up ALREADY. So we just kept going straight to get down to the 403 to try that way. We did okay for a while and then the traffic was stop and go. I was having some major stomach issues during the drive because of my nerves and the traffic did not help at all. We didn’t get to there until about 9:45am. I was all panicked that they would cancel his surgery and so on because we were late.
A and daddy in the first waiting room waiting for the nurse to come and prep him for surgery!
Grandma and A…
I was very impressed with how well I did throughout the whole morning. I thought for sure that I would be a mess but I held up! My stomach issues continued until late Monday night when everything was over with.
Mommy and daddy getting him changed into his gown for surgery…
Look at my smiley little guy before surgery! (If he only knew what was coming!)
After seeing the nurse and having his vital signs and oxygen sat taken we were told to go back into the waiting room and we would be called downstairs shortly.
Now waiting to be called down for surgery!
Excited mommy and daddy…(grandma got a GREAT picture of the three of us together…I will post it when I get it here!)
Finally we were taken downstairs. WOW, I felt so good at this point. We talked to the anethicist and the nurse that would be with him in the OR during surgery. Dr.Papsin also came out to talk to us briefly. I think having such an amazing surgeon put me more at ease with the whole ordeal.
In the final waiting room waiting for A to be taken into the OR. (By the way, I did very well holding myself together!)
At about 11:10am A was taken away from us and into the OR. The countdown was on! They told us to expect him out around 2pm.
Grandma, daddy and I went to get some food and to try and take our minds off of the worrying of the surgery. About 1pm we were in the waiting room where daddy and I tried to get a little sleep. That didn’t last very long because Dr.Papsin was out to talk to us just shortly after 2pm.
So the surgery was very difficult for him to do. There was a TON of bleeding and his blood pressure, oxygen sats and heart rate kept dropping. At this point they would have to stop and wait for him to recover which was causing more bleeding. He told us that he believed something was going on with his heart and that there were many opinions happening in the OR. We were a little bothered to hear all of this as it really wasn’t what we had expected. At any rate, Dr.Papsin was able to get the implant in and it was working. (They hook it up to the computer after implanting it and make sure that it works.)
A was vented for the surgery therefore he had a pretty hard time coming off of it as he was on a lot of morphine. We were not able to go into the critical care room until 4pm to see him. He was having problems with his oxygen levels for a while but they had him stable. He was not able to be transferred up to his room in constant care until almost 10pm.
A about nine hours after surgery. Just got out of critical care unit and up to the constant care room.
So the first night was pretty rough for A. Daddy and grandma left about 10:30pm. He was on codeine, tylenol and motrin continuously. I headed down the the surgical waiting room to get some sleep on one of the couches. When you are as tired as I was, ANYTHING is comfortable! I was only able to get about 2 hours of sleep before I was called back up because A was very irritable. He wanted to be held constantly.
The day after surgery…I got a couple of little smiles from him.
The doctors came in on Tuesday very early to check on his incision site. There was more bleeding going on than usual still and they had to keep a close eye on it. The bandage had to be changed four times during that night and normally it isn’t changed at all. Later on that day they took out the drainage tube that was in behind his ear.
Tuesday night was also a long night. He was once again very irritable and still receiving all of the meds. The nurses said that normally children who receive the implant do not even want pain meds, but with A they kind of expected all of what was happening to happen.
I headed down once again to get some sleep and had about four hours. I felt like a zombie yesterday walking around.
Dr.Papsin also told me that day that A is a tough little guy and that is why he was there. Made me feel good. He was happy with the way that things were looking around the site but just wanted to wait for A to go home because he wasn’t himself.
A yesterday sitting in his chair. It was his first time being out of bed and he wasn’t really himself this morning still.
Grandpa stopped by for a bit to visit. It was nice having someone there as I had been by myself since the night of surgery when daddy and grandma left.
I also had cardiology come in to see A yesterday. Dr.Papsin had arranged this after some fussing on my part because of his blue spells and what he was doing during surgery.
At first they said they couldn’t overstep Mac because he was already being seen there. A little while later they came back and said that Mac has discharged A from cardiology. Huh?!? I have been waiting for three months now for a echo to be done. Pre-op was in the beginning of March. They were VERY confused.
However, the cardiologist said that his heart sounded good and that he didn’t think that was the problem. This was a good thing but at the same time still left us with no answers. I asked him what could be causing the issues and he came back and told me that he had just looked at the xray from the 11th and that A’s lungs are awful. He said they are all patchy and that is his problem right there. Once again I am confused because I have been told in the past while that his lungs are fine and there is pretty much no lung disease. Cardiology told me that they think it is from him aspirating and when it is small amounts it causes damage. Ugh, yet another problem now!
Later on in the day…
So early in the afternoon I was still complaining about his blue spells and his sats. They didn’t seem too concerned because he wasn’t really doing his “norm” as he was still on oxygen. I left in tears and when I came back, guess what?!? A had one of his BIG spells, the apparent life threatening events! The docs that were dealing with him and everyone else saw what happened. He has not done one of these since April 4th.
Around dinner time last night…much more himself. Hanging with his koala from Dr.Papsin. This koala has a cochlear implant as well 🙂
So late last night the docs discontinued the oxygen because he isn’t on it at home. A was asleep and satting 98-100 on the oxygen. It was turned off and he went down to 75-85. Turn it on and he would go back up. It was very obvious that it was helping him. However, long story short they STILL sent him home.
I was pretty emotional all the way home. I think it didn’t help that I was WAY over tired. But the great thing is, is that A had a great night. He still has continued to vomit blood but when he did it in the hospital they said it was most likely from the intubation. I will definitely be keeping an eye on this.
A today with no wrap on his head.
Today he has been himself totally. It is great to see this! Grandma was here for a bit and now I am going to try and lay down and have a nap with A!
Oh, this is the best thing about today. Cardiology from Mac called and want to do A’s echo next week. I thought he was discharged?!?!
Well today went well until about 11am. A was up at 9am and was still tired but he was fussing in bed so I got him up. As time went on he was acting irritable and fussing a lot which is unlike him so I knew he wasn’t feeling well. My social worker was here and even she knew that something was up because normally A is so happy. It was hard for us to even talk because he was so fussy and throwing up so much (I could scream!) I noticed he was warm so I took his temp. Sure enough he had a fever. I gave him some Advil and it helped with that. I am really wondering lately if he is aspirating when he vomits. Again last night it was very hard for me to go to sleep because his breathing his so loud and wet sounding. It is definitely different than what I have heard with him EVER. So then I get searching about aspirating and start getting worried that he has aspiration pneumonia. However with the fever coming down I felt much better. I think it is time for maybe another swallow study (although with him not feeding by mouth it won’t help much). I left a message with his GI today hoping that she can see us sooner than later.
I was going to cancel all of the appointments this afternoon but decided when he went to sleep about 1pm that I would just leave them as they were and take the day as it came. So at 2pm Pat came over. She is the manager of HLO, a company that I am getting a PSW through. We talked for a little bit until Dawn came who will be the PSW working with A. I was sooo sooo impressed! She was VERY nice and really was interested in A and what he is doing and what she needs to do with him. So she will be coming here every Monday and Friday for three hours each time. It is almost like I know she is a PERFECT fit for A and I. Kind of weird. Pat told me that if I am happy with how things are going and want another one to come just to give her a call. I know that some of them are willing to do nights so that is going to be an option in the back of my mind for sure. The agency that I get nursing through has no night nurses available right now because of shortage.
At 2:30pm Deb came to work with A on his hearing. It was nice for Dawn to be able to see what he does with some of his days and she seemed to enjoy it. Here are some pictures of Deb working with him. (Oh, and by the way I couldn’t believe how happy he was to play with her! It was then that I decided he didn’t need to go to the doctor’s to get checked on. It is surely an A thing to be like this!)
In this picture she was doing the little piggy’s with his toes. She had done his left foot and then right when she was done he lifted his right foot like he was telling her to do both! It was really cute!
In these next pictures he was laughing! It isn’t too often that A laughs so I was kind of dumbfounded about he whole fever/vomiting ordeal when he was doing this for Deb!
Deb is so happy with how much he has changed in the few weeks since she has seen him. It is always nice to hear how happy the therapists are with him and his progress. And she can never get over how he has such great social skills! Something he definitely doesn’t get from mommy. That is surely a daddy trait that he received!
So after his therapy session with Deb he was tired and wanted to sleep again. Dawn and I sat here and talked about lots of different things. I love how comfortable she was here and how comfortable I felt with her.
Dawn left at 5pm and A decided to wake up shortly after that. And boom it was like a different boy again! He was irritable/fussing…..so frustrating when I never know what is going on with him! I ended up getting him calm but he just wanted to be held all night. Which is fine. I love that he still wants to cuddle! I knew for sure that he wasn’t feeling well because I got out some sugar water in the bottle and he was going nuts! I had to be very careful though because it is almost like in the very beginning when he forgets that he has to breathe and swallow at the same time. He took about 40ml all together which is very impressive for a child that doesn’t take ANYTHING by mouth!
Tonight after daddy got home I went out to get A some pedialyte to run through his tube for the night to hopefully rest his tummy so he can get a good sleep. I also know that when I don’t feel well I don’t want to eat so I am sure he isn’t really too happy having formula go in constantly.
I am really hoping that he has a good sleep and is better tomorrow. It is almost like he has not fully recovered from whatever was wrong with him when he was admitted a couple of weeks ago. I sure wish doctors could figure him out.
And yay, we have a stander coming tomorrow finally! It is the one that I don’t really want to try but I figure it won’t hurt. She may bring the superstand as well but not sure yet as there are still parts on it that need to be replaced.