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!
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 we have had an interesting few days around here. Wednesday night the night nurse was a new one which I absolutely cannot stand when there are a bunch on that DO know him. This nurse had come to help out for the night because of short staff, and she usually works in the critical care and NICU. I thought okay, well she has more experience than others….what could go wrong? Well for starters she was not friendly at all and didn’t do any vital signs until after 11pm. J and I had left for about fifteen minutes at about 10:30pm and we came back into the room with A in the crib and three nurses standing around him. They had the oxygen blasting in his face and the suction going. I looked up at the monitor and he was in the 20s and I immediately told them to get rid of the oxygen. The nurse looks at me and tells me that they need it because he is satting so low. I then tell her that he can’t have oxygen and that it makes him worse. She was not told this on handover. Ugh! Then the most shocking news. She said he had thrown up! WHAT?! Sure enough his shirt was covered in vomit and he was NOT happy. It took me a good ten minutes to settle him down. I asked what he was doing and she said nothing…he was just sitting in his chair watching TV. Well the parents next to me told me that she was bouncing him pretty rough in his chair and then he gagged and threw up. I was livid. I went right out to the nurses station, waited for the charge nurse and spoke with her. She was ready to cry because she was so stressed out from her shift already. Anyways she said she couldn’t change the jobs because this nurse helping out specifically requested to have babies or she wasn’t coming to work. A isn’t a baby I said…he is almost three. Closest thing I was told. So I settled down and she agreed to put A on her pager for the night.
I then asked our nurse to page the on call doctor as I was freaking out that A had thrown up. He came to talk to me but it was really a waste of time. That is what sucks about things happening on the weekend around here!
Friday we had a little meeting with our complex care doctor and the social worker. We have finally come to the decision that A will be going home. I am not thrilled to be leaving here without answers, but I need to get over it I guess. This is VERY hard for me to accept. They are calling my case manager and getting her to come in for a meeting. They want me to have more nursing than just two nights a week. I told them how home care nursing just isn’t the same so they will be getting nurses in here to train that I will have at home. I will also be having a monitor for him as well. Genetics will follow up with us on an out patient basis. I am not quite sure when we will be going home but probably within the next couple of weeks. We were also told that the chest team wants a chest x-ray and an echo done on A every six months after we leave. I will be talking to chest on Monday about everything because they really thought that his feeds were related to his desats but we found out with the probe that there is no correlation at all. Should be interesting to see what they have to say about that. Maybe they will finally do a CT scan. Who knows.
Friday night. A’s feed finished at 11pm and two minutes later he looked funny. His sats dropped to the 70s and then he threw up. No gagging, no retching, just threw up. Probably about 30mls as well. I was so upset! I just don’t know how this is happening with a fundo that is tighter than usual!!!! The doctor on call came last night but he really couldn’t help me out much. He did say he totally understands why I am concerned and the regular team needs to know about this for sure on Monday. It was at this time that I found out that he had thrown up as well on Thursday night after I went to bed. I was never told in the morning when I asked how his night was.
Yesterday I also started A with some sweet potatoes mixed with his 6pm feed and some rice cereal mixed with all feeds. He is doing great so far and I can’t wait to get him to all blended food. I just wrote out a new chart today for his feeds. It took a while as you have to count all calories and water consumption.
Today A went down for a nap at 2pm and at 2:30pm woke up with gas and then went into one of his big spells that he has not had in a couple of days. The nurse on today was kinda freaked out because she hasn’t been with him in a while. He went as low as 8 and it lasted for about 25minutes for the whole episode. We both also noticed some strange staring spell during the episode. Ugh talk about a downer for the day!
I have been thinking today again about the botox in the saliva glands and think that I may end up doing that before we leave. I do notice a lot of secretions during these episodes as well as when he gags. We stopped the glyco the other day as I didn’t notice it helping so maybe I should just TRY the next step. I will be talking to the docs on Monday about it again.
Well I think that maybe, just maybe the doctors are getting their acts together. On Wednesday they came back and started to talk again about going home. I told them that if they made sure the discharge papers said that he was having cyanotic episodes then I would take him home. Well needless to say I didn’t see the doctor again until Thursday. They know that they cannot send a child home that isn’t stable.
I was also told by the doctor on Wednesday that one day soon I need to start advocating for A. I think I almost fell out of my chair. I asked if she was kidding and she said no. I said that from day one that is ALL that I have been doing. I haven’t stopped advocating! And as far as I am concerned I advocate WAY too much in my mind. I shouldn’t have to fight and fight to try and get answers for A. She then told me that doctors are always going to come in and want to do tests and that isn’t fair for me to continue to let this happen. She said at some point I need to start advocating that enough is enough. WHAT?! But no one wants to do tests. And then she told me that it isn’t fair that I am requesting all of these tests for him. In particular the probe that he is having done on Monday. She said it is unnecessary testing that I am willing to put him through. Now give me a break. The last thing I like to see is A having anything done. It is hard for me not to get emotional when they take blood! But I feel the probe IS necessary to see if he is refluxing … end of story.
After some more fighting about the echo cardiology finally (but reluctantly) agreed to do an echo. So that was done yesterday and from what I heard last there was nothing seen. This is wonderful news! Just another thing that I can rule out.
Genetics came up in conversation again and she didn’t feel that was necessary either. I was confused because I had another doctor mention that A could have some sort of genetic mutation. She told me that the next time that I was pregnant I could just have an amnio done to tell me if anything was wrong. I told her that I couldn’t do that. I already had one preemie and there wasn’t anything that I would EVER do to risk that again. She said if I had it done early enough then it would be okay. Ummmm NO!
Well guess what? Genetics is going to be doing a consult. They came up yesterday but will be coming back on Monday to speak to me.
I also told the doctor that I felt that if A was “typical” then they would be doing everything possible to try and figure out what was wrong with him. That if he wasn’t a preemie and didn’t have cerebral palsy they would figure it out. I really am getting the feeling that they look at him as TOO disabled. But A is my child and that doesn’t matter to me. He is my life and I will continue to fight for him as long as I have to. I think they are starting to realize this.
He continues to have episodes. It seems odd too that most times they are at 2pm and 10pm. I can’t seem to figure out what is going on at that point that would cause this to happen. Two nights ago he had one that really scared his nurse and she is a nurse that usually works in the ER. This says a lot to me. Today he had one for about thirty minutes where he didn’t come above 60. I just don’t know what to think about them. All I know is that they are very hard for me to deal with and I myself feel really scared at times.
Now for some long overdue pictures…
Well we are still in hospital. Last week went pretty slow with not much happening around here. Beginning to become a regular thing. The good news is that we got a new chest team that started on Wednesday and I really really like the lady that I am dealing with. She LISTENS to me and FEELS my concerns. These are definitely hard to come by around here so this is great. She had asked me why an echo hasn’t been done yet and I explained that the last team said that it wasn’t cardiac related. She then went on to tell me that she is concerned about heart failure because of all of the low desats he has been having and with what is going on. I agreed with her that if she felt it was necessary to do the echo then I was all for it. She put in the order.
Thursday comes around and I was speaking to the complex care team. I asked about the echo and they told me that they had talked to chest and that the chest team didn’t realize that A had just had one done in November that was fine. He then told me that they were satisfied with the results therefore would not be wanting a new one.
Thursday IGT also came in to speak with me about the botox that they wanted Ashton to have. It was then when I found out that there are many risks with the botox. After discussing it thoroughly with the doctor I was comfortable with going ahead and signed the forms for it to be done on Friday morning at 9am.
Well, later that day I was not feeling so great about it. My gut was just not right with the idea. And when I have that feeling I know that I need to listen to it! So at 4pm I talked to his NP and told her that I was cancelling it. Well to make a long story short, they were not too impressed. But guess what? I don’t give two shits! I then went on to tell her that I wanted to try him on the med first that does the same thing as botox. This was the med that they told me about a week ago that they didn’t want to try because it can thicken secretions. Well I figured after asking many moms about it to give it a shot. Who knows, it could work. So he was started on that at a low dose and we will probably have to increase it tomorrow as I don’t notice any change yet.
Friday. A HORRIBLE day! Chest doctor was here and asked why the echo had not been ordered. I said that I talked to complex yesterday and they told me that you were satisfied because of A’s echo in November. Boy was she angry!! She told me that she never said that and has placed it in the notes three times that she wants one done!!! She then opened to the last note she had wrote and asked if he knew how to read?! LOL I told her that she needed to talk to him because I was tired of always getting different answers from different doctors. Kind of crazy if you ask me! Things like this just should NOT be happening!!!!!
Then around 2pm I went to lay him down for his nap. Well he was NOT doing well. He started into one of his fits and it lasted almost an hour. Thank goodness that his favorite nurse was on and she is so wonderful with him. I was getting VERY emotional. I am just so tired of seeing him so blue so often. I left to go to the washroom quick and when I was coming back I saw his NP. I told her that I wanted a probe done because I think he is still having issues with reflux and that I was tired of them sitting around not doing anything when A is obviously struggling! She said we could talk as a team on Monday to see if the probe was necessary. I told her that it was because either way I wanted to know IF he was refluxing still. I mean it is obvious that the fundo is working but he has not had a g tube in two years so it IS possible that he just cannot handle g tube feeds.
I went home on Friday night because Aunt K and Grandma S were coming down so that we could go and get Kelly’s dress for the wedding on Saturday. I really did not want to leave but felt comfortable knowing he was well taken care of with Jordana.
Saturday went well for dress shopping and now just two left to get. We drove down here on Saturday in the nasty nasty snow but luckily we got here before the worst of it came.
Today is A’s 8 month hearing age!!! And to top this post off with the best news yet…..the complex care team is switching over tomorrow!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am ecstatic! Can you tell? LOL
Sunday night we headed over to watch the Grey Cup with grandma, grandpa and their friends after getting our family Christmas pictures done. WOW that was not fun and I can’t believe how grumpy this kid is when it comes to picture time! Here at home he smiles as soon as he sees the camera but yet whenever we go for photos he is the most miserable child ever! I did everything but hang upside down to get a smile out of him!
Hanging out watching football…
Notice how he is holding BOTH of his socks! Way to go A!
Well we had quite the day yesterday at Mac for A’s echo! Grandma came and picked us up at 6:30am and we were there for 7:30am. A was in a super mood which was surprising as I had to wake him up and he didn’t sleep much on Sunday night.
Mommy in her scrubs and one happy boy!
At 9am we were taken over to the OR with A. I then had a chance to talk to the nurses and the anesthetist about A being put under with a general anesthetic. I am always very concerned because he doesn’t do well afterwards coming out of it. The anesthetist decided that they would try and do the echo without the general. At 9:45am A was taken into the OR. At 10:30am the nurse came to get me to go into the recovery room to see A. I was immediately basically thrown onto a stretcher as another nurse took my coat and purse from me. A was then handed to me and it was obvious that he wasn’t doing too well. I thought that they had ended up doing the general and this was the problem.
The anesthetist then came over to talk to me about how things were done and her concern on A dropping his sats to the 50s and 60s continuously on six litres of oxygen. I said to her that this is ALWAYS how he behaves after a general anesthetic. This is when she told me that he didn’t have one. He didn’t even really have sedation. The only thing he had was a “whiff” of nitrous oxide which she said was enough to last maybe ten minutes. What?! Then what is going on?! No one knew. They were suctioning and did a breathing treatment. He went to sleep on me and was doing “okay” at this point with the odd dip into the 70s. However as soon as he would start to wake up and move he would start again with the drops.
The cardiologist came in to speak to me and that is when I got the great news that A does not have any cardiac issues! A year ago his echo showed that one of the vessels that grows in the muscle of the heart was actually turned into his left chamber and they were concerned about that. It corrected itself though so we are free of cardiology!
Finally at about 1pm A was transferred out of the PACU and into the day surgery recovery. However his dips still continued and I was getting VERY frustrated. I just don’t understand how this goes on and on but yet NOTHING is done?! Grandma was finally able to join us and A went right to sleep when we laid him on his belly and gave him his lifesaving soother. The nurse had his oxygen turned down to just under a litre and he was satting 80-84 consistent. Finally about 4:30pm he was up to 88-90 consistently. I however was not pleased with all this going on and just wanted to get to the bottom of it. The anesthetist kept coming in and was worried about what was happening. She then mentioned that he might be admitted. I of course fought that because I don’t need him catching something else up in the ped ward. I then asked what was going to be done if he was admitted. Nothing….just observation was her answer. Well I can observe him at home and we have oxygen here.
When I was talking to her later on I asked what she thought was happening. She immediately said airway issues. Thank you! That is what I have been saying for so long now I don’t even remember!!!!!! But then of course it comes down to the fact that no matter where we are (hospital) and he does this NOTHING is done. No tests are ordered and we are sent on our way. I just don’t get it.
At about 5pm A woke up and I was trying to keep him happy. The anesthetist wanted to see him awake and what he was up to before sending us home. Well wouldn’t you know it he was not happy and constantly dropping to the 60s,70s and so on. The only way to keep him happy was giving him water! Of course I automatically think he has a fever because he only drinks with a fever but nope. Probably the nitrous and all the oxygen. Grandma couldn’t give it to him fast enough! LOL
FINALLY at 6pm she said we could go as long as he was put back on the oxygen here at home and that if I was at all concerned that I would take him in. Sure thing! (I had to laugh in my head because EVEN when I DO take him anywhere there are no answers. *^$& even calling 911 didn’t get us anywhere. How sad is this?!??!
We were home about 7:30pm and A went right to sleep. He did well last night and is a happy guy today. Still on a half litre of oxygen but home….
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.