Oh where do I begin?! Well we have been home now for about five weeks and I have to say that things are going AWESOME! I really don’t know why I was so afraid of the “trach talk” way back when, but really it should have been a LONG time ago. And by a long time ago, I mean before A even came home from the NICU.
It breaks my heart to think that for four and a half years he has basically been suffering in silence. Unable to tell us that he cannot breathe right. Unable to tell us that his sleep was so crappy and he was up so many times a night because he would wake up needing air. The sad part is, is that all of this was KNOWN to the hospital where we spent 88 days back in 2008. They knew his sleep was horrible. The sleep study showed that he obstructed every five minutes. But yet they didn’t feel the need to tell me this as his mother? Instead I was told that “it wasn’t that bad.” I would hate to see then what they would consider BAD.
Feeds are going pretty good. I now have him up to a mixture of half and half with the two formulas, which gives him 37.5 calories per ounce. However he is still sitting at about 25lbs which is not really where we would like to see him. Weight is something that he definitely needs to gain! The hope is that now that he is not using so many calories to breathe that he will start gaining more. We are also only giving about 1200cals per day which his doctor feels is enough. So we will se and maybe have to up him a bit if he doesn’t start gaining something soon.
SLEEP. WOW WOW WOW is all I have to say. This child SLEEPS! I cannot believe the difference that the trach has made with just this alone. Do you know how odd it is to put your child to bed and he goes to sleep within about ten minutes? Do you know how odd it is to not be going up and down stairs fifty times before you even get to bed yourself? Do you know how odd it is to peak in at your child and they are satting about 95 CONSISTENTLY? Do you know how odd it is to not listen to his alarm go off pretty much ALL night? This is ALL so very odd to me!!!! For four and a half years I have been constantly getting out of bed. Constantly silencing his saturation alarm. Constantly trying to console him to go back to sleep. And now I do basically NOTHING. My little man can finally SLEEP. Finally get a good rest. Just flippin amazing!
Feeds. They are going okay. It is so weird after feeding A for his whole life during the night to be doing NO feeds and night and just feeds in the day. Right now I have him up to a rate of 155mls for a total of 230mls per feed. And he gets four in total.
Reflux. He seems to be doing okay reflux wise. He is down to 30mg/day of prevacid from 45mg.
Daytime. Everyone asks me if he seems better in the day since he is getting such a goods night sleep. And I have to say no. But this is only because A has always been such a happy wonderful kid. I used to wonder where he got all of his energy from when he slept so crappy at night! And to this day I cannot answer this.
Mommy and daddy. We are better than EVER. I feel like since coming home that I have a brand new son and a brand new husband. J has been helping out more than ever and it is so greatly appreciated. We had a long talk shortly after A came home and he told me that he realized after all that just went on with A of how close we were to possibly losing him. And now with the trach it is a whole new world for us. I never thought I could love J more than I did, but another WOW! Life is just awesome now!!!
A also had biopsies done on January 18th for the mito/metabolic issues. We will not be going back until the 20th of April for the results. My heart is kind of heavy knowing that we are so close to maybe discovering what could be going on with A. I am VERY scared but I try not to focus on it to much and just live each day with him as if it is our last. Life is too short to worry about things that may come up and even things that do come up are not always the “worst” thing that could happen.
I think I am scared too because J and I have been talking about having another baby. Well trying to anyways. And to be honest I would do ANYTHING to have another child. A healthy child. I think it would be so good for all three of us. But I know that I have to wait until we find out the results from the biopsies and go forward from there.
February 7th A got to skate with the Toronto Maple Leafs! Here are some pictures!
A also made the Leaf website on video from the skate. Go here and watch at about 38 seconds to see him being pushed by Bosak.
In other family news, my brother Shaun and his wife (my sister in law) Andrea were on the TV the other night. Andrea has been dealing with heart failure and in October of last year her life was being measured in hours. It was at this point that she had an LVAD placed (a mechanical heart) to keep her alive. She has been on the transplant list now for over 100 days and we all pray she will get it soon!
Please go and watch this. Just go HEREand on the right hand side click on the video Hope For Heart.
And today, 17 years ago I lost my Grandma C. I remember it like yesterday. One of the worst times of my life. I still get emotional when I think about her. I just wish she could have stayed to meet A and just be the wonderful part of my life growing up that she always was. RIP Grandma, I love you SOOOO much!
Well it has been a very tough couple of days for me. A was taken off of the vent on Sunday and did okay until about 5pm. He then started with his morphine withdrawals AND blue spells. I was just beside myself.
Anyhow, the one stitch has come out of the right side of the trach. This is of course the side that is a bit wider open than the other. We had to change his trach tie Monday night and he did NOT like it. He was crying his eyes out and was very very off colour. I don’t even want to see this kid when we have to do trach changes!
There is a chart at his bedside where the nurses are to record all blue spells/desats so the doctors can try and figure out WHY he is still having them with the trach.
Monday I probably cried for three hours straight. I just am SO tired and just want things to be fixed and go home. There have been alot of tears shed this week!
On a positive note, he is sleeping BEAUTIFUL. I don’t want to jinx things, but so far so good in that area. The only exception was last night which he was up from about 12am until 6am. I was finally able to see his sleep study that he had done almost two years ago while we spent 88 days in Sick Kids. He had a total of 58 obstructive episodes which came down to one every five or six minutes. Those are obviously gone now with the trach.
Why on Earth I was told by his team at Sick Kids that his sleep study was not that bad is beyond me. His RT here said that his sleep study was “scary.” To me this is something that should have been dealt with almost two years ago.
He is breathing better in the day and does not have the nasal flaring that he has always had and the hard work of breathing.
We had a team meeting Tuesday and the issue now is his feeds. He is aspirating (we got formula out of his trach Monday-not 100% sure but pretty sure it was) and we are trying to figure out what to do. I was told by the docs that I am NOT allowed to have any say in feeds right now and they are trying to work them out. This is VERY hard for me as I am a 24/7 hands on mom. So they want to feed him straight peptamen 1.5 at a rate of 20mls/hour from 8am-10pm. Today he is up to 40mls/hour for the same amount of time. This makes me ANGRY. He has to sit in his chair this whole time. I know it is only temporary, but I am stressed out after watching him in his chair for ten minutes with the trach.
The doctors said that I am probably emotionally, mentally and physically exhausted and therefore they are taking some “burden” off of me. However I did say that I am the one sitting there all day with him, not the dietician. I am the one watching him reflux. I am the one dealing with him being upset because he is NOT comfortable in his chair.
Yesterday and today from about 12pm until 2pm he is just CONSTANTLY turning blue and just not happy. I really don’t know what to think of it but I just hope that this stops.
Just another day…..I really need to start seeing a light because I am already stressed to the max! Here is a picture I took last night myself of my little man and I.
Well A went into surgery last night for his tracheostomy about 6:30pm and at 8pm we got word from his ENT that all went wonderful. We were able to see him in the PCCU very shortly after. He is on a lot of medications for sedation however he is NOT sleeping.
Right now he is currently on the ventilator (life support) but is taking some breaths on his own above the machine. They want to keep him very sedated and pretty still for another 24 hours before they even think of weaning him off the meds and the vent.
I have a lot of emotions right now but so far I feel okay with what has gone on. It was a VERY tough decision and I hope that I never ever have to make one like this ever again in my life!!!!
Here is my tough little guy….
Keep the prayers coming….we have a LONG road ahead of us. He has been a very good boy though for mommy so far on her birthday which is the best birthday present EVER!!!!
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.
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 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….
So the team meeting is done with. I have to say that I think that I did very well considering the range of emotion that I was feeling. It is always so hard to go into these types of meetings strong and confidant and then feeling like you are going to start bawling as soon as you start to talk. It was a little intimidating having so many different types of doctors in there all listening to what I had to say and asking questions.
So here is the plan. Every single doctor involved agrees that we need to treat the reflux. The first step is having a scope done of his airway and lungs. They are also going to do a wash of his lungs and send off a sample to see if this might help them at all. The scope is going to be done in the OR under a general. I am happy because A has had too many scopes for my liking awake and it is not nice at all. However the ENT is not comfortable doing it while awake anyhow because of the spells that A has. The general worries me a bit though because he always does so poorly when any type of sedation is used. This all being said, his ENT said that he would like to see A in the ICU afterwards as an extra precaution.
It also came up that he would like to remove A’s adenoids. This scares me even more because it is a surgery and added to what is already going to be happening I don’t know what to think. However his ENT and I agreed that if he felt once getting in there and seeing for sure the size of them that it wouldn’t really make a difference then he would leave them. If he felt that they could be contributing to his issues then he will remove them. Hard to stay positive when the ENT is the one saying how he is worried how A will do.
After the scope comes one of my biggest fears. Fundo. I am starting to feel more comfortable with it however knowing that I have tried everything else and knowing that it really isn’t an option anymore. It is life or death.
After recovering from the fundo will come the sleep study. NOW, we are hoping that the fundo will help MANY of his desat spells. We are hoping that his BIG spells are caused by reflux. Of course none of this we know for sure. Which makes it hard but again, nothing left to do. I was not able to speak with GI as she was called to surgery but I was shown the ph probe results that he had and it did not look good at all. I am still waiting on numbers of how many times and so forth. It is just so hard to believe how much he is refluxing but yet he is the happiest kid in the world. The docs agreed that it does make it harder for them as well because they aren’t seeing a “sick” acting child. Instead he smiles and coos at them!
Now the scary part. Every doctor agrees that they do not think that the reflux is his only issue. So the sleep study will show what is going on at night (if it isn’t just reflux). I asked about this because he does drop a lot during the night but he is worse during the day. During the night he drops to the 40s, 50s and 60s but it is odd because I can tell by his breathing that he is going to do it. During the day he changes colour MANY times and we think it is different then what happens at night. Central apnea versus obstructive apnea.
Of course this is when the trach came up again with the vent. But we are going to wait to go down that road. I need everyone to please pray that A will not have to be trached!!! I get very emotional just thinking of it and it just plain sucks.
The main doctor that I have been dealing with this week came in after to see how we were. Sad. Scared. Numb. She is in her last year of residency and I have been very pleased with her. She told us tonight that she knows how hard it is for us to make such crappy decisions, but that A was not going home until they figured him out. WOW. Finally. Last week the doctor wanted to send us home because he was stable. She said her team thinks he is far from stable and they are afraid that if we brought A home now that he would die. Blunt. To the point. But REAL.
So all in all it looks like we are in for a long stay. It has already been a week and man oh man does it ever suck! I came home tonight to get a good sleep and put up some pictures of my little man as I am sure that everyone misses seeing his face! The nurse that is on tonight is absolutely wonderful! I asked her if she used to be a NICU nurse because she just has that about her and she said no she just likes kids. I told her that I have met many a nurses that work with kids but don’t seem like she does. Well long story short, her younger brother has severe cerebral palsy. It is very obvious that she has dealt with a lot as she is compassionate, loving, supportive and caring.
I have to say that although I was frustrated in the beginning with this hospital and these docs, they have really stepped it up. I just hope that whatever lies ahead and whatever decisions are made that I will feel good. I hope that everything works out well and A stays strong and keeps fighting.
Now for some pictures!!!
I also want to say thank you to Shannon (Olivia & Avery’s mom) for coming to visit last night. It was SO nice to have you come down!!! You are an absolutely awesome person and I am lucky to have met you. By the way, the lasagna was GREAT!
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…
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….