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 A went into his procedure yesterday at 2:15pm. He was given a general anesthetic and then had botox injected into four of his saliva glands. They also did a CT scan at the same time of his lungs as I wanted this done. He did VERY well and I am so proud of him. I went into recovery about 4pm expecting to be sitting there holding him for a couple of hours but we were only in there about fifteen minutes and he came back up to his room. He was smiling and doing wonderful!
When he went to sleep last night he was satting in the 70s so I started getting worried because this isn’t typical for him to stay there constantly so I took his soother out and flipped him to his side and he was fine. He stayed at 90 for pretty much the rest of the night.
I haven’t noticed any difference at all yet with the saliva glands, but the doctor said it would be a couple of days. Fingers are staying crossed!
As for the CT, all the pulm doctor said was that there was some chronic changes but they were probably due to aspiration. Probably?! That isn’t a good enough answer for me but that was all he had to say. I will be speaking to someone else tomorrow.
Well for starters the weekend was pretty good. Daddy and I were able to take our little man out of here yesterday on a day pass!!! So we left here about 1pm and headed home. He really didn’t know what to think about being in the vehicle…but after three months who can blame him? When we left here his shoes would not even go onto his feet! LOL So we know he has grown!
I’ll tell you though, I was more nervous leaving here yesterday with him than I was the day we left the NICU after eight months! I was so afraid that he was going to have an episode in the car but thankfully he didn’t.
It was very cute to see how he reacted when we got home. As soon as we pushed his buggy into the living room he was going nuts!!! And of course daddy got him a big huge TV so that was put on right away for him and he thought it was great!
We got ready to head over to my aunts for Easter dinner which was nice because we have a nighttime routine of Ashton having a shower. He loved it! When I was drying him off he started to gag and went very off colour and into one of his fits. It didn’t last long but it really freaked me out.
Everyone was pretty surprised when we walked into my aunts house with A! We had a great dinner and A slept for a couple of hours because he had not napped all day. We had to be back here for 10pm but traffic was absolutely insane that we didn’t get here until about 10:30pm.
Today…I spoke to his complex doctor and told her that I wanted to give the botox a try. Well botox is tomorrow!!! I was told to go down to IGT (where they do the botox) to sign a consent. When I got down there I told them that I wanted to talk to the doctor that would be doing the botox before I signed. I don’t think this is a common request because she wasn’t too thrilled about looking up who was doing it and then asking when he would be available to speak to me. I ended up going back about an hour later and he was great. He explained everything again to me and did happen to tell me that botox is not usually used for pooling of secretions. What?! The docs told me that this was a thing that is common here. Well he told me it is common to use for drooling but not for pooling. So A will be there first case like this…he did however say that it makes sense that it COULD help so I am holding onto that. I have to say though that I am VERY nervous. A couple of times today I almost thought about cancelling it. But I know deep down that if I didn’t at least try it that I would always wonder what if.
He will also be getting a long awaited CT scan tomorrow since he will be under a general. The docs aren’t thrilled and keep saying it won’t show them anything but I cannot stop wondering so it needs to be done.
I had another genetics doctor come in to see me today and meet A. She is actually a neuro genetics doctor which kind of fits him better I think. She was also very kind and caring and took her time. She looked A over for about five minutes and just watched him. Well her conclusion was that his issues and what she sees are not related to his prematurity. I asked her about the CP diagnosis and like she said, CP is such a wide range that it easier to diagnose that anything else. She really doesn’t feel that this is what is going on though.
She said that she was happy with the testing being done but that she does have some other ideas if everything was to come back okay. She did mention a spinal tap to check his neuro transmitters as well as a muscle biopsy. And the last thing she mentioned was mito. Hmmmm interesting is all I have to say. Scary too.
So please hope and pray that this botox does the trick for his nasty nasty spells. I don’t have high hopes but somewhere inside I still have some left….
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.
After set up for the sleep study…
I love how curious he is now!
Cuddles with Vickie…
February 25th with NPT tube…
Well it has been quite a week. I am sorry that I have not posted a recent update but I am just so tired of putting negative things on here. Seems A can never catch a break.
So the NPT tube that he had put in on Monday came out Tuesday morning. It didn’t help him at all and if anything it made him worse. The doctor wanted to leave it in until the afternoon (probably so he could see for himself that it wasn’t working) but I told him that if he didn’t get an RT in to take it out then I was taking it out. The RT was there within about ten minutes. He told me that if it was helping that I would definitely see the change. He said it is pretty amazing when it does work because the kids go from desatting to nothing. No such luck for A.
Wednesday I didn’t see ONE doctor all day. I did take some time out for myself because A had one of his favorite nurses on. So I took the streetcar down to a huge scrapbooking store to get some things for my wedding invitations that I will be making. It was nice to get away and do something that I wanted to do.
Thursday. Big team meeting. I have to tell you it was probably one of the hardest meetings that I have been to. There is nothing like walking into a room full of people staring at you and talking about your child. So the plan right now is that we are going to try the botox in his saliva glands. Because this has to be done under sedation I asked if they would do a CT scan of his chest at the same time. They said they would but warned me that it probably wasn’t going to give them clear answers and if anything it would probably complicate things. They also told me that one CT scan equals about 250 x-rays so to think about the radiation.
There was talk of sewing up his vocal cords so that he can’t pool secretions in his airway and of course the trach but all the docs there agreed that this would not be the next step. Those are life changing decisions that no one is comfortable making right now.
Long story short, the doctors really don’t feel that there is going to be an answer for A. And like they said, they can keep doing test after test after test but as they go it just gets more invasive and unfair to A. They were pretty positive that if there was an easy answer for what he is doing they would have found it. I am really starting to believe that.
Things got pretty emotional near the end when we had talked about everything. They said that they think we need to get A home within two weeks and let him live his life here instead of in the hospital. No one said anything in too many words, but I don’t think anyone in that room thinks that A is going to be around for a long time. Just the words they were using and the looks on their faces. This is REALLY tough for me to swallow. I don’t know what I would do without A. He is everything to me and I don’t want to be planning his funeral anytime soon. The thought of not having him here brings me to tears. It makes me feel SO angry inside. I know I shouldn’t think negative but it is hard not to. I am pretty good at reading people and this is what I felt at the meeting. I came home last night because I have some things to do here for the wedding and I just wanted to go back after an hour of being here. Just looking at his toys makes me cry. I can’t even go in his room without crying so his bedroom door is closed.
Well I thought I would do a post before we head out for Toronto! A is getting his MRI and CT scans done tomorrow. The MRI is for the cochlear implant (the last step before we find out whether or not he is a candidate!) The CT scan is for his doctors in London. We arranged for them to be done together so that he wouldn’t have to be put under twice.
Today A’s early interventionist was here. It has been a LONG time since we have seen her as she was off sick. She is absolutely amazing with him and you really know that her heart is in her job! She comes to play with him and help him with different toys and such. Well today she helped him draw a picture!!! I once again had a moment where I could feel the tears well up in my eyes. Amazing how such small things mean so much!
Grandma was here too today and A had some fun with her today!
Anyhow, I am off and can feel the butterflies in my stomach already about tomorrow!
So it has been a few days since I have posted, but I am happy to say that A if fine now and back to his old smiley self! Actually maybe even a bit happier than his old self!
Thursday went okay, he was still a bit fussy off and on but it was definitely better than Wednesday or the rest of the week. He actually slept all night on Thursday which was a bonus because it is VERY unusual for him to do this. Of course his sleep was interrupted early as I had to wake him up at 6am to get him ready to head to Toronto Sick Kids for 9:15am. Grandma and grandpa were here to pick us up at 7am and it took two hours to get there! I cannot stand the early appointments because we get stuck in the traffic all of the time and it is just insane!
So the appointment was for his pre-op for his MRI and CT scan. He will be put under a general for this and they decided that they want him to stay overnight after he gets it done. I am a bit frustrated with this because he has had a general before and just had to wait a couple of hours before leaving. I think with his history and cyanotic episodes that he has on a daily basis they are just being safe.
When they hooked him up to the sat monitor, he was only at 87. The nurse waited and waited and he pretty much stayed around there. She said that he can’t do that all the time and I said yes he does. She asked if the docs are investigating it and I said no with a little laugh. After a bit he came up to 95 so she used that number for the form. I would say that his average sat is 92.
Anyhow, he was in a great mood the whole entire day at sick kids! When we left he fell asleep in the truck and we drove around a bit so my parents could reminisce about the past since they grew up in Toronto. We drove by my grandparents old house, wow that was strange! Haven’t been there in almost twenty years. We then went for lunch at Swiss Chalet before heading home.
Last night after daddy got home we went and bought bikes! Now we just need to find a bike trailer for A. I actually found a place that builds them and they are right here in Guelph. I think I will take A in one day this week and see how I like them. The one at Sport Check he sat in fine, but this other place builds them for special needs. And I think once he gets bigger he will need the extra support for his head/neck/trunk.
Today was a good day as well with A…..I need to get to bed though as my eyes are trying not to close! Oh, and I don’t know who left the comment the other day about A’s soother being in upside down but that is the way that he likes it. I know how it really goes but he cannot hold it in by himself that way. I think with his bottom lip over the top edge it helps him. Oh well, your comment gave me a laugh! 🙂
A and mommy the other day playing around with the camera!