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Decision Is Made

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

Infection

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.

Please Just Pray

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.

Update On PICU Stay

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!

We Are On Call For PICU

Well, as I sit here and write this post so much goes through my head. We headed to the hospital yesterday to see A’s respirologist. As I have said in previous posts, I truly wish we had met this man sooner. He is amazing in every single way and really knows his stuff. And he is the ONLY doctor that has taken what A does VERY VERY seriously and is very confused as to why his issues have not already been dealt with.

So, as it sits right now we are waiting for “the call”. A is going to be admitted to the PICU for a period of time and will not be able to come home until he has some sort of ventilation.

His issues at night have continued and this use of oxygen has been very concerning to me as this is not something that he *needed* in the past. Yes, he has always had issues with desats, but not like it has been lately. I have been saying that I feel like he is going downhill and that is the same thing that his resp. doctor thinks. He told me that kids with issues that A has get worse, not better.

So the plan is going to be to try to get A used to wearing Bi-PAP at night while he sleeps. “Bi-level Positive Airway Pressure; Used to treat sleep apnea, and other sleep related breathing disorders; Delivers alternating levels of inspiratory pressure (IPAP), or higher pressure, to keep the airway open as a patient breathes in, and the expiratory pressure (EPAP) is lower to reduce the work of exhaling; the BiPAP can be set to drop the level at specific intervals, or upon demand.”

Children usually take some time to get used to this, so depending on how well A does with it will depend on the length of our stay. The good thing is that he has not had his soother since he was ill in October. This would definitely be an issue as the Bi-PAP mask goes around his nose and over his head. And with him only taking his soother upside down and sleeping on his belly, it would have been next to impossible.

The other added bonus is that he really really wants to sleep on his back now, however I have not been able to allow him as his saturations are always lower and he just doesn’t breathe well. Bi-PAP will be MUCH easier if he is sleeping on his back.

*IF* the Bi-PAP does not work then we will have to talk deeper about a tracheostomy. When he mentioned it to me yesterday I said that I didn’t know if I could do a trach to A. His exact words were “well here is the question to answer it for you. Do you want your son to live or die?” I started to cry. Of course I want A to live, but a trach is a HUGE deal. It is a major surgery. It would change his life completely and ours. It is not something I take lightly.

Now with all that has been going on, he is very concerned about A having issues with his heart because of how much harder it has to work for him with all of his breathing issues. So they will doing another echo to check on things. One of the big issues that can happen with severe sleep apnea and the apnea that A has daily is right heart failure.

Another thing that was talked about was these big “spells” that A has. He thinks that they *could* be sudden pulmonary hypertension spells where the vessels all clamp down which cause him to go very blue and not breathe. I sit here wondering why on earth no other doctor has even suggested this could be the problem????

So it looks like we are in for another hospital stay. I feel more comfort in the fact that this is being done in the ICU but I am still very scared of what the future holds yet again.

The other issue that we have to deal with is A’s night feeds. His respirologist wants him off night feeds, no ifs ands or buts. This is proving to be VERY difficult and for now I just can’t make it happen. I didn’t do a feed last night but today just did not work out to give him more feed. He was refluxing like crazy with his second feed and that was only at noon. I will be lowering the night feed by 10mls/hour but that is the best I can do for now.

A’s x-ray from our last appointment did show that he does have interstitial lung disease. I specifically asked A’s chest team at Sick Kids *if* he could have this and they said no. Yet again, another question in my mind.

This is day two of no beds being available. I just pray that we get one soon because I am so afraid that my little man is going to be spending Christmas in the PICU.

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THANKS ALL

Our Interesting Life Continued…

So the issues with A continue as usual at this household. We are having problems with feeding and sleeping and of course along with that comes the awful desats that go on ALL night.

For about the past week the nurses have had to use oxygen at some point with A during the night. I didn’t really think much of it because they have to administer oxygen if his saturations go below 90 for greater than two minutes. Well anyone who knows A knows that this happens A LOT. Anyhow, two nights ago, Friday night was HORRID. It brought me right back to the days when we brought A home from the NICU. I would never want to relive those days, and honestly sometimes I wonder how I even did survive back then.

When I put A down on Friday night and hooked him up to his monitor, he was sitting about mid 70s. He was sound asleep. I tipped his head back a little and he came and hovered around 84. This is NOT good enough. For about twenty minutes I just stood there watching him wondering what the heck was going on. I still don’t know what to think.

I came downstairs and grabbed some nasal prongs, tape and an oxygen tank. Once I got up to his room he went to 91 and stayed there. This is still not really good enough for me because it isn’t the norm when he is sound asleep.

Basically from 1am until 5:30am I was in there about every five minutes to place oxygen in front of his face or to try and move him to a position where his oxygen saturations would be better.

Feeds. I am having so much trouble getting the required amount into him in a 24 hour period. I really wish sometimes that we didn’t need food to survive! As you all know, he has been off of blended food since getting sick in October and gaining weight. I talked to his dietician on Thursday again and she said to maybe try adding just avocados in with the formula to make it a little thicker and maybe that would help go down easier. Well within thirty seconds of receiving only 30mls of food he threw up. He was gagging constantly and I had to pull all of the food back out of his tummy. This is very strange as well because he had avocado every single day in his blend of food.

So in the day time I have to give him a total of 750mls and at night he gets 500mls. This just does not work! I am so afraid that he is aspirating which in turn is causing his lungs to get worse-which we really CANNOT let happen. This would explain the crappy oxygen saturations. Thankfully we are seeing his respirologist in a weeks time and hopefully he will have some insight into what we should do. I know he did speak last time about admitting A into ICU for a couple of days to trial CPAP and BI PAP but I just didn’t think that would work because A has a soother. However he has not had his soother now in about six weeks! Something really needs to be done though because he cannot go on the way he has been.

A weighed in at 27.6lbs last night. Seems like he has stabalized there for a bit so that is good. Much better than 25lbs!

We just got home today from getting his second dose of the H1N1 vaccine. So the continuation of our hibernating will happen for about three more weeks. And even then we have to be careful as he has not had his regular season flu shot! Ugh neverending worry I’ll tell you!

On our way out of the mall where his doctor is we stopped at the one store. I was looking at the Toronto Maple Leaf stuff and a lady was trying to get around me and A. Once she got down the aisle she wanted she turned to me and asked me if I was his mom. I said yes. She held her hands to her chest and with tears in her eyes told me that she admired me. I said thank you. She told me she thought he was a gorgeous boy-ha we all know that!-I again said thank you. And she told me, no thank you for doing what you do. To give him life. I told her he gave himself life. He fought to be here. She gave me a hug and again said she admired me. I said thank you again and told her that it is nice to hear such kind comments from people. Totally made my day. It is not too often that a complete stranger says anything like this to you. Why can’t the world have more people like her in it???

National Prematurity Awareness Day

is today….

Never in a million years when I thought about having kids would I have thought that it would happen to me. That is what most pregnant moms think.  “It won’t happen to me.” But it can. Over 13 million babies are born premature throughout the world every single year.

A’s chance of survival when he was born (based on stats) was only 39%. I am sure that his was actually less because he never had time to get the steroids to help his lungs. From the time I got to the hospital here in town wondering what was happening, to the time I delivered at a hospital 45 minutes away was only about five hours.

  • 1 in 10 premature babies will develop a permanent disability such as lung disease, cerebral palsy, blindness or deafness.
  • 50% of premature babies born before the 26th week of gestation are disabled, 15% severely so.
  • A fought like I never knew such a small baby could fight. He is alive because of his fight. He is the strongest boy I know.

    I never thought I would have to deal with another 24 weeker, but realized when I had H at 18 weeks 4 days that anything can happen. You just have to take the hands that you are dealt in life and try to learn from them. I have. I truly truly believe A was born to teach so many people things about life. And H, well I think he saved the life of another little boy.

    I hope that one day soon I will be able to try again and not have the heartache of the NICU or the death of another child. I think we have had our fair share of crappy dealings in life and we can expect nothing but the best next go!

    And today I think of all of the doctors and nurses who kept my boy alive. My biggest thanks and love goes to Dr. Shah, Dr. Sant’Anna, his primary nurse Danielle, DJ, Joyce, Marg….without all of the love and support you gave to A in his life I know he would not be here!

    And my biggest thanks to A. You have taught me more than anyone could in a lifetime. You have made me slow down in life and enjoy things I never maybe would have.

    You make me laugh. You make me cry. You are just the most perfect child and I am so blessed. Many pity me, pity us but they don’t know what they are missing out on. What you have taught us could not have been taught with a full term, healthy child.

    You have made the love between daddy and I grow to heights I didn’t think love could go. I have never been so in love with someone as I am with him. And the love that he feels for me is just as equal.

    You are the most amazing child and we love you with all of our hearts!