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.
Well it was another eventful night last night. Once again the diarrhea started and didn’t stop all night. I got him into the doctors this morning but there wasn’t much he could do. He said that it is probably a gastro viral infection and it usually lasts for 7-10days. So today is day number five so I hope it is almost over. He was very impressed with how A was looking for what he has been going through. He isn’t dehydrated at all, and that is the one thing that I have been concerned about. So for now I have him on lactose free formula until he is past this. Everyone knows that milk isn’t good when you are sick so the same goes for him. I would bet the next time he gets weighed he will have lost weight with all that has been happening. And add the fact that I am diluting his formula to a 20 calorie diet instead of his regular 30 calories.
Grandma was with me, which was nice. It is always so much easier to have another couple of hands to help. We had to take him over to the hospital after the doctors just to get an x-ray to make sure that his gj tube was in the right place and that it wasn’t that causing the problem.
So far today so good. He hasn’t had any more diarrhea since this morning.
Deb, his AVT was here for an appointment but she didn’t work with him at all because we had a lot of things to catch up on. She is just finishing the report for Sick Kids about her feelings on A getting a cochlear implant. And she is recommending him for one. Sick Kids relies on her opinion because she has been working with A and I for a while and can see how I interact with him and what he is doing now. One of the main things that she had to discuss with me was how much work it is post implant and to make sure that is something that I want to do. Of course she knew my answer but it is something that has to be asked. Once he gets the implant and then has it turned on it is a MAJOR commitment. Basically our life has to change in a way where every single noise that is made has to be pointed out to A. So, although I know it will be difficult at first it is definately something that I am looking VERY forward to.
Anyways I am going to get the little monkey to bed. I have been keeping him awake for the past three hours to try and get him back on schedule and he isn’t happy with me right now needless to say!