Well everyone, I signed the papers this morning for A to get the tracheostomy done. I talked to the ENT for about an hour and I just know that this is a good decision. The best chance at giving A a better chance at life and hopefully we will see a great improvement.
It has been so hard because for his entire life we have been dealing with his low levels of oxygen and his big “episodes”. We were always told that they were nothing to worry about and he would come out of them. Well I have since learned that is not the case. The team here just cannot believe that NOTHING has been done for A before now and we are just so lucky that he is alive.
What is a tracheostomy?
A tracheostomy is a surgically created opening in the neck leading directly to the trachea (the breathing tube). It is maintained open with a hollow tube called a tracheostomy tube.
Why is a tracheostomy performed?
A tracheostomy is usually done for one of three reasons: (1) to bypass an obstructed upper airway (an object obstructing the upper airway will prevent oxygen from the mouth to reach the lungs); (2) to clean and remove secretions from the airway; and (3) to more easily, and usually more safely, deliver oxygen to the lungs.
What are risks and complications of tracheostomy?
It is important to understand that a tracheostomy, as with all surgeries, involves potential complications and possible injury from both known and unforeseen causes. Because individuals vary in their tissue circulation and healing processes, as well as anesthetic reactions, ultimately there can be no guarantee made as to the results or potential complications. Tracheostomies are usually performed during emergency situations or on very ill patients. This patient population is, therefore, at higher risk for a complication during and after the procedure.
The following complications have been reported in the medical literature. This list is not meant to be inclusive of every possible complication. It is listed here for information only in order to provide a greater awareness and knowledge concerning the tracheostomy procedure.
Airway obstruction and aspiration of secretions (rare).
Bleeding. In very rare situations, the need for blood products or a blood transfusion.
Damage to the larynx (voice box) or airway with resultant permanent change in voice (rare).
Need for further and more aggressive surgery
Air trapping in the surrounding tissues or chest. In rare situations, a chest tube may be required
Scarring of the airway or erosion of the tube into the surrounding structures (rare).
Need for a permanent tracheostomy. This is most likely the result of the disease process which made the a tracheostomy necessary, and not from the actual procedure itself.
Impaired swallowing and vocal function
Scarring of the neck
Obviously, many of the types of patients who undergo a tracheostomy are seriously ill and have multiple organ-system problems. The doctors will decide on the ideal timing for the tracheostomy based on the patient’s status and underlying medical conditions.
The tracheostomy procedure:
In most situations, the surgery is performed in the intensive care unit or in the operating room. In either location, the patient is continuously monitored by pulse oximeter (oxygen saturation) and cardiac rhythm (EKG). The anesthesiologists usually use a mixture of an intravenous medication and a local anesthetic in order to make the procedure comfortable for the patient.
The surgeon makes an incision low in the neck. The trachea is identified in the middle and an opening is created to allow for the new breathing passage (tracheostomy tube) to be inserted below the voice box (larynx). Newer techniques utilizing special instruments have made it possible to perform this procedure via a percutaneous approach (a less invasive approach using a piercing method rather than an open surgical incision).
General instructions and follow-up care after tracheostomy.
The surgeons will monitor the healing for several days after the tracheostomy. Usually, the initial tube that was placed at the time of surgery will be changed to a new tube sometime between 10 and 14 days following surgery, depending on the specific circumstances. Subsequent tube changes are usually managed by the treating physician or nursing staff.
Speech will be difficult until the time comes for a special tube to be placed which may allow talking by allowing the flow of air up to the vocal cords. Any time a patient requires mechanical ventilation, air is prevented from leaking around the tube by a balloon. Therefore, while the patient is on a mechanical ventilator, he/she will be unable to talk. Once the doctors are able to decrease the-size of the tube, speaking may be possible. At the appropriate time, instructions will be given. Oral feeding may also be difficult until a smaller tube is placed.
If the tracheostomy tube will be necessary for a long period of time, the patient and family will be instructed on home care. This will include suctioning of the trachea, and changing and cleaning the tube. When the time comes you will be provided with ample information, instruction, and practice. Often, home healthcare will be provided, or the patient will be transferred to an intermediate health care facility.
This could be done as soon as tonight. I will keep everyone updated. Please pray for everyone involved. And most importantly for A.
Well we came here yesterday for a consult with ENT and then a probe/sleep study. Well the probe went in fine but the nurse that put it in refused to leave him after seeing how he constantly desats. The sleep study was then cancelled and he was admitted. He is now in pediatric care where we wait. I have spoken with many doctors so far and they want to get to the bottom of it. Every doctor has SEEN the video that I have of A’s spell in November and they have also seen how he desats over and over and over. Last night he had a sat probe on from 12am-6am and it showed 223 desats. YES that is 223! Of course some of these are not actual but this is a pretty significant number.
We have talked about his entire history and how this has been going on for WAY too long with nothing being done. Of course the docs think at this point that there is definitely more than one thing happening and we just need to figure it all out. Talk of the fundo and of the trach has come up.
So please pray that this is what we have finally been waiting for! I don’t know how long we are here for but I would imagine a while. The doctor yesterday that came in to see him (lung doctor) would not even let us go hang out until the bed was ready for him. We had to go to emergency so that he could be monitored constantly. And he still is obviously. Boy I sure don’t miss the monitor sounds!
One day at a time…
As you can tell I am excited about Christmas with counting sleeps. It is kind of a joke around here because J absolutely LOVES Christmas morning and is still a big kid at heart about it! Every Christmas that we have spent together he is up at about 5am, makes coffee and waits impatiently for me to get up. It is actually pretty cute! This will be our first Christmas here at home with A so we are pretty excited about the whole thing. I just wish that A understood what it all meant but hopefully next year! I cannot wait for him to believe in Santa and look forward to the big morning as much as his daddy!
Other than counting down days for Christmas things around here are pretty much the usual. A is still being horrible at night when we put him to bed and I really don’t know what to think about it. I know people tell me that it is a phase and such but it is so difficult to understand what is going on when he is not really himself during the day either.
Sunday night he almost went into one of his big spells and scared the crap out of daddy and I. Monday he had physio with Monique and he was NOT happy. About five minutes into it he was fussing/crying and AGAIN almost went into a spell. Which got me to thinking that I should have told the new neuro this that we saw a couple of weeks ago. You cannot “almost” go into a seizure. You either do or you don’t. So this makes me remember even more how I don’t believe that they are seizures. There are many times that he almost goes into one but then doesn’t. He looks like the beginning of them and at the end he looks the same, only thing is he skips the whole middle of them.
Monday I got my call back from the sleep clinic at Sick Kids and they have arranged for the ph probe along with the sleep study. They had no idea what an impedance probe is which just blows my mind considering they are one of the top children’s hospitals. Oh well guess I have to be happy with the ph probe. I was however very frustrated because I have two appointments on one day in January there anyways and this was the day that the lady said for the sleep study. I said for sure that would be great because then I would get two appointments over with and the sleep study that night. Much better than driving there two times! Well she had to call back and then decided that GI will not put in the probe BEFORE we see ENT because it could impede on their exam. I told her that I would be VERY surprised if they would do an exam that day as it has to do with blue spells. She then said that you don’t see ENT about blue spells. What?! Anyways I got it worked out for the same day except we will have to see ENT first which means an extra long day as they could only squeeze us in in the morning.
Now for some pictures! Yesterday grandma was here and thought A was ready for a nap. She had turned off his implant and changed the channel on the TV. Well that was it! He is so nosey during nap time that I have to shut off the TV or he’ll just watch it instead!
Today we had our follow up with A’s paediatrician. Oxygen is now off but we will be able to keep it here at the house for a year now which will be nice in case he gets sick and needs it. We talked a bit more about A’s spell being seizures and he seemed okay with me not agreeing that this is what is happening. But like he said, it has to be neurological, cardiac (which we don’t believe it is), airway related or reflux. Now we do know that A does have neurological issues and reflux. I have myself ALWAYS believed that he has some airway issues happening but it has never been investigated to my standard.
His ped was doing a referral for A as well to London Children’s Hospital for a gj button! I hope that things get going with this too because I would love to see how A would handle small g tube feeds. Even if I have to do j feeds during the night to get most of his calories into him it would be awesome to get to the point where we could do some bolus g tube feeds.
Sick Kids called AGAIN today. Yes, it is crazy how for some reason everything is coming together but lets all keep our fingers crossed that we continue this way! They were just calling to let me know that the referral for ENT was done and specifically for Dr. Papsin which is exactly who I want!
The other team at Sick Kids called yesterday to let me know that the feeding study was being arranged as well as the sleep study. I can hardly believe it!
I put up our Christmas tree on Tuesday night so here are some pictures from then until tonight!
Well things around here are slowly getting back to the norm. A is still on oxygen and we will hopefully be able to get rid of it after seeing the ped on Thursday. I currently have him between a quarter of a litre and half litre. I do wonder though if it is helping his with sleep because everyday for the past three days he is napping for three hours! Normally his naps are only maybe an hour if I’m lucky. He actually went down today at 1:30pm and he is still asleep and it is 4:50pm.
Now for my news of the day! This morning I got a call from cardiology at Mac. They were calling to inform me that they have an opening in the OR for A to have his long awaited echo next week. I was really thrown off with this as his pre-op was in March. Seems kinda funny to me that so much crap has been going on in the past week and they call with this appointment. Anyhow, I was a bit iffy on whether or not I wanted to say “yes” because I really wanted him to be seen at Sick Kids for this. I also don’t like that I was not able to talk to anyone about my concerns of A being put under a general anesthetic. I then told the lady I was speaking to about Sick Kids having a referral waiting for A but the files from Mac have not yet been sent over. It has been about three months since the first day I tried to get them transferred. She told me that she had not been approached with regards to sending all his cardiology reports over to Sick Kids. I however know different as I have spoken to them about four times and the secretary from Sick Kids has also called them twice. Anyways she then informed me that she had no problem sending all the reports over. What?! I wonder about all this….I have decided that I will take A to have his echo done for the main reason that it is going to be a different cardiologist than we have dealt with. I also said that I expect to talk to the doctor afterwards and I want answers.
Anyways next part of my good luck day. I called to speak to the nurse for the pulmonolgist that we saw in October. I wanted to know about the referrals that he said he was doing. She was absolutely wonderful and very helpful. The pulm had talked in length with Dr.Jacobson who was the ped that we saw at Sick Kids a while back. He was very concerned about A and what is happening but since he didn’t believe that it was related to his lungs there wasn’t much more he could do. So Dr. Jacobson took over for the referrals. His nurse however talked to me in length about what has been going on lately and was very caring and sympathetic. Not too often that you find someone like this. (Well for me anyways.) I asked her as well about the RSV shot for A but she did warn me that the pulm would probably be against it as at A’s weight it would be three needles which just isn’t nice. She said he is also getting past the point where they say that RSV would be helpful to him.
After talking to her I phoned the ped that we saw at Sick Kids to find out what was going on with the referral for ENT and the feeding study. Once again I talked to someone that was VERY helpful and caring. The ped wasn’t in but her secretary told me that she would be sure to get her to follow up with me tomorrow. I had also mentioned that I would like to see Dr.Papsin (ENT) as he was the one that did A’s cochlear implant and I really liked him. He also saw what A does when he is having a spell as he was very unstable in the OR during surgery. He had come out afterwards and told me what happened, that there was a team of them in there that were worried and lastly that it would be figured out. Well it never was figured out. When I asked the pulm about doing a specific referral to a certain ENT he said it couldn’t really be done. Well the lady today said that she will see to it that we get in with Dr.Papsin.
SO, maybe just maybe we will finally be getting somewhere!!!!!! I am not getting my hopes up quite yet BUT I am a little more optimistic.
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….