Hi everyone,

The meeting has been and gone, and there has been a lot for everyone to absorb.  I apologize for taking so long to post it, but Wyatt has been keeping us busy. 

Lisa had her meeting with the Drs on Thursday, where all the Drs were present, Cardiology, Dr Van Arsdell, ENT, Neurology, CCU,  Dr Russell, the nurse practitioner etc.  They discussed Wyatt, and all that had been going on, lately, and the big picture.  Basically, the outcome of this meeting was that they did not want to extubate any more, as they felt it was just doing more and more damage.  They told Lisa that her options were to trach him, or to take him off the vent and let him go.   Obviously Lisa does not want the latter, so she asked Dr Humpl to hold a meeting for the immediate family, to explain to everyone the decisions that were on the table, and the possibilities with them.    In getting a trach, it does mean Wyatt would be able to get home, but with ALOT of help and care, and constant 24-7 supervision.   The Dr needed to explain to the family the implications this has, and the kind of support Lisa and Wyatt would be needing.  He went over all the options, several of the possibilities, best and worse case scenarios, and answered a tonne of questions.

Basically, if Wyatt gets the trach, it can go a few ways... the reason for this is we do not know why he needs it still.. there are two possibilities.. the first being that maybe his airway jsut needs to heal, or the second being that its the distal lower compression.  These two things would affect very differently how much and how long he would need both or either for.  He can need the trach and the vent all the time, he can need only the trach, and no vent, he can need the trach, and the vent part time.  He could need one or both for the short term, meaning a few months to a year (this is more likely if it is the airway, and the airway can heal itself)   If it is the distal compression, it is more likely that he would need both and that it would be longer term, as in years.  It is also a possibility that the airway may not heal itself, and he could need reconstructive surgery for that.  Dr Forte would check the airway in 6-8 weeks after the trach placement, and see if the airway was making any progress or not.

With the trach, he would not go from the CCU to 4D, as he used to, he would stay in CCU until all of his issues are straightened out, and then go from CCU to Bloorview McMillan rehabilitation center (for kids) where he would get intensive rehabilitation - physical therapy, physio therapy, etc.  There they would teach Lisa and us how to re teach him as well, physically, and help his neurologic development, as well as train us on how to do everything with the trach, change the trach tube, suction him, connect and disconnect the vent, etc.  We do not know yet how long he would be there.  It is looked at as a transition to home.  Once home he would still have therapy, it would just be as an outpatient, and also possibly right at home.   Lisa will need constant help, as Wyatt will have to be literally watched 24 hours a day.  A nurse is funded for 5 nights a week, but we will have to do the other two nights a week.  She will also need help with regular day to day things, such as someone to go with her to appointments, shopping, etc, as she can't be the only one in the car with Wyatt, she will need help with groceries, cooking, cleaning, laundry etc, as again, Wyatt will need 24 hour a day DIRECT supervision.  We need to get Lisa and Wyatt a new apartment, a new car, etc, all of which are going to need to be easily accessible, and very clean and safe... He will need to be EXTREMELY careful with germs... with a trach he is FAR more suceptible to infection, particularly respiratory infection, and therefore it is VITAL that no one with any type of cold, flu, infection, ANYTHING, be around Wyatt until it has been treated effectively.  That also means if you have been around a sick person, even if you yourself are not sick, you cannot be around Wyatt.  He will be very fragile in that regard, and even moreso because he also already had the compromised immune system due to the DiGeorge.

The trach will allow Wyatt more comfort and freedom in terms of movement that the ETT he has now, does not allow.  He will be able to move around pretty much normally, just maybe dragging a machine along behind him, he will have the freedom to move his head around, and most nice for him (and us too) his cute little face will be free of tubes and wires and tape.  I am sure that will feel heavenly to him. 

AS for what was said at the meeting in terms of Wyatt, I will summarize as best as I can. 

We know that there are a few areas of concern for Wyatt... One being his brain....... we know it has shrunk, due to the lack of oxygen, the laying there in CCU for so long, etc.  There is water around his brain where there should be brain.  There are also several areas of damage in the brain.  We do not yet know how this will affect Wyatt, or how his body will adjust to it.  We do know that the part controlling movement - the Basal Ganaglia, is very damaged, and that Wyatt now makes involuntary movements.  We do not know how much this will affect his ability to move voluntarily, and this is just another reason why he will be getting the intensive rehabilitation.  We do not know how he will adjust in that will other parts of his brain take over for the parts that are damaged, etc... we just don't know and only time will tell.   We are concerned for his airway, larynx, etc...  We know it is severly damaged from all the intubating extubating etc, and that we are hoping that because the trach by passes this area, it will be able to heal.  If it doesn't heal on its own, then we are looking at reconstructive surgery.   We are also concerned for his lungs, as after being intubated so long, he has developed chronic lung disease.  However, this is something that, if we get him off the vent, CAN correct itself.   We have to think about his stomache, as all the feeding issues he have, yet we are hopeful that the GD tube is the answer for those right now.  We have concern for his kidneys as there function is not the greatest due to all the meds and the fluid overload he often has, and of course, last but certainly not least, we worry about his heart... though of everything, at the moment, that seems to be the least of our worries.  We do know that in the future he will need further cath lab interventions, and surgery, but they are more maintenance than anything, and we knew those would be coming.  Again, those won't hopefully be for at least a couple of years.

So that everyone understands, you also should know that Lisa can choose at any time to go the palliative care route.  Due to the heart defect alone that Wyatt has, she could choose that route anytime, now especially with all the other issues, this is always a possibility.  What that means is that if he were on the ventilator, they would remove that.  They would not allow him to suffer, or starve, or anything like that, they would treat any infections, but they would not take any measures to help him to breathe, and would not resucitate him.   They would just keep him comfortable.

We were told that basically if Wyatt had been born in most other places, with the heart defect he has, he would not haveeven been operated on to begin with... even in North America, so we are very lucky.

Since the meetings a couple of other things have popped up, but we don't really have any concrete answers on them yet.  Saturday evening, he appeared to be having seizures.  We are still waiting on an EEG to determine this better, Lisa is hoping for a 24 hour monitor, so that it is more likely to catch one...  It is possible that he is having these now, because the fact that he has brain damage already, makes him more susceptible to them, and one of the meds he is on for sedation right now, also happens to be a drug that is used for suppression of seizures.  They are curently weaning that medication.    Lisa has asked that they continue weaning though, as this is a valuable piece of information that she needs right now... whether these seizures are something that are going to continue or not.   Sunday, he self extubated himself, and they had a heck of a time getting it back in.  It took 8 tries before they finally got it back in.  After that he was very irritated, his heart rate went very high, as well as his blood pressure, his sodium went very low, and glucose very high.  His chest on the left side was swollen, and you could see his heart just pounding away.  He was making his involuntary movements a lot more, and he had a fever.  They gave him some more sedative, and he finally settled down in all aspects.  He had a good rest of the night, and so far today has been ok.

They have been doing intensive physio with him working on his lungs, trying to get the secretions out.  He has been awake alot more.  His feeds are going well so far, and he is up to 10mls an hour, and today they are upping the calories. 

Lisa was to talk to Dr Forte today about when they would be doing the trach, but Wyatts White blood count and CRP are up today, which is indicative of an infection, so they have cultured him and started antibiotics for now.  If the cultures come back negative, they will assume all this was from the trauma of yesterday.  The trach won't be done with an infection, so hopefully he does not have one.  As soon as they know he is clear, they will go ahead with it.   Lisa has given it all alot of thought, and wants very much to give him this chance.  It is possible that this may be just what he needs in order to heal other parts of his body.  We have to all stay positive and hope that this is the case.  When we asked Dr Schwartz if these seizures should have any effect on her decision about the trach, he said absolutely not, so trach it still is.

They are going to continue weaning the medaz, and increasing food, rotating calories and volume.  We wait to find out when the EEG and trach will take place.

I would like to make sure that everyone truly understands what kind of decisions have been made here, and that we are here to support and encourage Wyatt and Lisa, and to offer anything other than that is quite simply unacceptable, and honestly, won't be taken kindly, and in fact, just simply won't be tolerated.  This was a very difficult decision for Lisa to make, as I am sure you can all appreciate, and we need to do nothing but offer her love and support and encouragement, for her and for Wyatt.  Wyatt has fought this long and hard for us, we can't imagine he would want us to not do the same for him.  We need to give him this chance.  I hope everyone can understand and appreciate and accept that.    On the flip side of that, if there ever comes a time that other decisions need to be made, I will ask and expect the same discretion from all of you.  This has not been an easy road.

Thank you all for your love and support, and I will keep you all up todate.  It took me a long time to write this one, and I am really hoping I haven't forgotten anything or left anything important... I am sure if I have, Lisa will call me later to tell me about it!  Seriously though, if I have forgotten anything, I will just add it in with the next updates.

As soon as we have word on when EEG and trach are happening, I will update.

The actual putting the trach in, is apparently not too bad of a surgery, though it is still a surgery, and means anesthetic, and being that he does have cardiac issues, surgery is always risky,  and recovery will be painful for a couple of weeks, so he will be back on morphine etc, but after that, it should be a much better road.

Please keep saying many prayers for Wyatt and Lisa,  and thank you for your prayers for Emma, she is doing quite well.

Laura