Well our follow up was yesterday with complex care. I have to say that I didn’t find it very helpful but I kind of expected that. Bascially I told him how frustrated I have been with how A is doing. I took my notes and showed him how much he has been vomiting. He seemed a bit concerned about that so we are doing continuous feeds throughout the night and three small feeds during the day to see if that helps. If not then we will do an upper GI to see if he is refluxing past his fundo (which I think it not functioning) and then switch out to a gj tube again.
Last night was our first night of continuous and we had a nurse here which was nice. He did okay until about 6am and she said he was gagging and definitely refluxing. That continuous ended at 8am and then at 11am he got his first of three small feeds for the day. He gagged through the whole thing turning off colour constantly. After the feed was done he threw up three times.
Sunday night when I put him to bed he went down to 14 and I was ready to freak right out. I can’t even tell you how stressful this has been since he has come home. I feel like I have aged at least ten years. Anyhow, I was so fed up with his shitty sats at night sleeping (88) that I put oxygen on him. Guess what? He satted 98 ALL night and slept great. So Monday night I did the same and it worked. Right now he is napping on the couch satting 82. So I have the oxygen in front of his face and he is 96.
I told the doctor about this as well and he seemed okay with it. Of course I don’t think it is my job to find out what works best for A. Especially when you are talking feeds and needing oxygen. He is only getting .5L so the doctor is okay with it. If he sats 100 I just turn him down as I don’t want him sitting at 100 because of his hypoxic drive.
After that appointment we went and he had some bloodwork done after his feed for genetics along with a urine sample. He did very well and I can never get over how awesome these people are there that take blood!!!!
I also just found out that the approval for his DNA to go to the States just went through so we have at least a three month wait for that.
Tonight is exciting for all of us. In January I was contacted by a gentleman who wanted to grant A a wish. Because of being in hospital we were not able to do anything. He is finally coming tonight to meet A to see what he wants to wish for! He also told me that he has a large sum of money for J and I to catch up on things since spending so much time in hospital. How awesome is this!? I still have NO idea what to wish for….maybe he will have some great ideas!
Well I cannot wait to go to our follow up appointment early next week. Since my last update I have been ready to pull my hair out. Tuesday went pretty good for him but he did have a big episode at 2pm just before his nap. And then from 6-10pm he was not happy. Wednesday he was up by 9am after a very restless night but he was happy. He had another big episode at 2:30pm during his crappy nap. He got very congested to the point I had to suction. At 7:30pm he vomited which is a half hour after his feed ended. At 8:30pm he had a pretty big blue spell where you knew he was refluxing and couldn’t catch his breath. At 11:30pm the nurse put him to bed and he had another vomit with a desat to 38. Thursday…he was fussy for pretty much his whole feed from 6-7am. At 3:30 he had an episode with huge burps. When I opened his tube to vent him 20mls came out immediately. 6pm his feed started and by the time it was over at 7pm he had vomited three times. Friday…up at 10am after another restless night and pretty grumpy. Back to sleep by 12pm. After his 2pm feed there was tons of gagging episodes and crying. 5-6pm gagging almost constant. This was BEFORE a feed. Feed on at 6pm and within ten minutes he had the hiccups and more gagging. 7:40pm he vomited FOUR times and LARGE amounts. My guess is that it was pretty much the whole feed of 180mls. Feed on at 10:30pm-11:15pm and then vomit at midnight. Last night…another crappy night. Up at 9:30pm. 10am-11am feed CONSTANTLY going off colour, crying and fussing. 6pm feed TONS of refluxing/swallowing/gagging. It is now 11:30pm and nothing since his feed ended at 11pm. Knock on wood.
To top this all off at night and at nap times he is satting at 88. He was not even doing this in hospital. His baseline is typically 94-96. The odd time he comes up and sits at 91 but not often. It is driving me bonkers and I have a hard time sleeping knowing he is sitting at 88. There are times that he sits in the 70s too for at least ten minutes. Now I know they say not to focus on numbers but when this is not normal it is hard not to.
This past week has made me realize that I probably just wasted 88 days at the hospital for absolutely no reason. I still cannot get over the guilt I feel for seeming to make A worse. It sucks.
So that is why I am ready to pull my hair out. These friggin doctors need to listen to me when I tell them that he is STILL refluxing. He is miserable and very hard to keep happy. It is at the point where I am scared to feed him. Scared of him gagging/choking. And pissed off that he has to suffer through all this crap when he doesn’t need to. IF and only IF they would listen!!!!!! If you wonder how I remember all of the above it is because I have been keeping detailed notes to shove in their faces next week.
Good news…we have a new member of the family. We picked her up on Thursday night. She is a 7 week old 4lb jack russell crossed with a pug. They are called jugs. We decided on her name tonight which is Mady. She LOVES A and can’t get enough of him. A, well I am not too sure what he thinks. Probably tired of the kisses LOL.
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.
First here are some pictures I found on my camera from when grandma and grandpa babysat on the weekend….
Hahahaha I had a good laugh when I saw this one…wonder who put his leg like that?
Well today was my birthday and what a day! Last night around 8pm A started to act very strange. It was so weird that even daddy noticed and we were both pretty concerned. He would go very pale and then you could tell that he was refluxing. Next he would go very off colour and then the vomiting started. The first two times were just clear and the third was a huge amount of bile.
By 10pm I was starting to get pretty worked up about how he was acting. I have a very strong instinct when it comes to A and I knew that something was going on. I still don’t know what last night was all about, but I hope I don’t see it again!
Anyways I decided to kick daddy out to sleep on the couch last night. I had laid A in his bed and right away he threw up. With him being sick and acting odd I really wanted to keep a close eye so he slept in bed with me last night. From 11pm until this morning at 8am he had vomited a total of probably 15-20 times. Every single time it was a ton of formula as well which had me pretty concerned. I have to say that he still slept pretty well though considering. He would start fussing and then I could hear his belly gurgling and then he would vomit and go back to sleep.
This morning I had a ton of laundry to do to say the least and things just went downhill. At 9am he normally gets a break until 1pm but because I had run his feed at half strength and 18mls/hour less I decided to run pedialyte. He has only vomited twice today and that was when I had tried half strength formula again. So it is now 11pm and he is still just on pedialyte.
The diarrhea started as well today but thankfully his last huge episode of that was at 5pm. At the current moment he is sleeping on the couch and his nurse is here. I am heading off to bed to get a good night sleep!
We still headed over to my parents for dinner and cake tonight and I got some great gifts!
We got the special tomato brought over today to trial to see if it is something we would like to get for him….of course with not feeling well it is hard to tell if he likes it…
A beautiful smile from my sick little man…
Well the whole ordeal started yesterday afternoon. A went down for a nap at about 1:30pm. It was very restless and he just was not comfortable from all the gas that he has been getting lately when he tries to sleep. At 4pm he was awake so I started to get him ready to head over to grandma and grandpas for dinner. When I went into his room to grab his clothes I heard him gagging. When I came out he did a HUGE projectile vomit of formula. Yes, formula. I never understand how he does this WHEN he does it. Anyways, he was happy and smiling after so I just figured it was a one time thing.
We noticed after it happened that he sounded very congested/wheezy and I just thought it was from the vomiting and he still had some in his airway that he couldn’t get rid of.
At grandma and grandpas he was good and the happy guy he normally is. Here he was sitting with us while we ate…
When we got home last night he was fussy and seeming to sound worse. When I put him into bed he had a couple blue spells from trying to breathe. I knew then for sure that something more was happening with him, possibly from aspirating the vomit. J stayed up with him so I could at least get some sleep. Even with my door closed I could hear A in his room trying to breathe, it was SO loud.
Finally at 3am J was able to come to bed. 3:30am I was up with A. I called and left messages for his physio, OT and speech therapist to tell them that I was cancelling their appointments. Liz came (his dietitian) and he is now 24lbs3oz. I had told her about his vomiting and how he was sick, had a low grade temp, blue spells and asked if she thought he could have aspirated. She said it was possible. I called his ped and got him in to him for 4pm. Well turns out that A did aspirate. He is now on steroids for four days and an antibiotic for ten days. We need to be on the safe side so that it doesn’t turn into aspiration pneumonia as that would be an absolute nightmare for him. We will be going back to the doctor Thursday and hopefully he is better or else he will be admitted.
When we got home I took his temp again because he felt so warm. It was 105! I gave him some advil, used a cool cloth on his head and cuddled with him. As of now his temp is back down to normal and his breathing is a tad better. His nurse is here tonight and she said he still sounds very tight and wheezy. It is going to be a long night I am sure but I am off to bed for the entire night!
My poor baby…
Well it has been a crazy few days here! I haven’t blogged in a while so I have a bit to update on. First, still no luck yet with getting A covered for RSV season this year. I have a couple of calls to make today that will hopefully get me somewhere.
Thursday night was a nightmare here as A once again had a pretty rough night. I am not too sure what is wrong with him when he does this, but he is VERY fussy and just not comfortable. I really can’t wait for this sleep study! I think he might have had an upset tummy because his tube site was bleeding and Thursday night before going to bed he had been vomiting a lot of formula. At one point it looked like a whole entire can. I diluted his feed for about 24hours when he was acting better and had not been vomiting. But thankfully it never turned into anything more and he is fine!
Saturday grandma and grandpa S came down to spend the weekend. They got here just after noon and we headed over to Uncle S and Andrea’s house for their housewarming. A was pretty tired but had a hard time sleeping as there was way too much going on.
After leaving there we all headed over to grandma and grandpa C’s for dinner. We had our “wedding talk” and have some plans in place. Now I just need to get my butt in gear and start making deposits and reservations! I can’t believe how fast time is going and cannot wait until the day that I get to walk down the aisle!
Sunday, A went to the Storm game with daddy and grandpa and grandma S and I headed to Kitchener to the wedding show. I was glad that I went because I found an awesome photographer, a fabulous cake decorator and even got some great ideas for things that I want to do!
At the game…
We got back around dinner time and then we all headed out to eat at Shoeless Joe’s. Grandpa and grandma S then headed back home and we came home to head to bed. A had other plans last night and decided he wanted to stay up until 11pm! I am happy to say that I only got up ONCE with him last night and I actually had to wake him up this morning for physio and OT.
I couldn’t resist these pictures before waking him up!
So we started the breathing treatments with the nebulizer for A on Friday night and they are going well. The first time that he had one he was pouting and didn’t know what to think. This morning he actually didn’t need me to sit and hold it for him and he just watched the TV. I can’t say that I really notice a difference with the treatments yet compared to the puffers, but I do know that he is getting more of the meds this way than the other.
This morning A had Monique and Shelly here to work with him and he did VERY well!! Check out these amazing pictures!
After physio and OT A had his nutritionist here along with his speech therapist. Yes it has been a crazy house already and we still have his auditory speech therapist this afternoon!
Anyways, A now weighs a whopping 24lbs 1oz!!! That means he has gained 22 pounds and 8 ounces since he was born! That also means he went from 710 grams to 10,931.58 grams! WOW! She also measured him today and he is 80cm which is 31.5 inches. At birth he was 10.5 inches or 26.67 cms!
His speech therapist David and I decided we are going to wait on the feeding study to decide when he will be coming back.
Well it looks like I spoke way too soon on my last post! A is STILL sick and he has been so kind to pass it on to mommy. Nights have been pretty rough because he is having such a hard time getting rid of all the junk in his chest. Much more vomiting happening as well which isn’t making things any better. I started to get a sore throat the other day and immediately started taking meds to help get it before it started. Well the sore throat passed but I have a cold and just isn’t making things around here very fun!
Sunday afternoon A almost went into a full spell as well. He was sleeping, well at least trying to sleep when he started coughing. He opened his eyes so I turned him over because I could tell that he was having a hard time catching his breath. Well the next thing you know he starts to go off colour, was very upset and starting to go stiff. I immediately held him close to me and just started trying to get him to take a breath. The doctors have always told me to try and remain calm, but that is much easier said than done! How the heck can you stay calm when your baby isn’t breathing!? Anyhow he eventually took a breath, probably about five seconds before he would have been right into the spell. He had very glossy eyes after and had the look like he had just had a full spell. It is just so weird and I don’t understand how or why it happens. Hopefully one day I will find a doctor that wants to figure out what the heck is happening when he does this!
Just some comparison photos for today!
A at 3.5 months old in the NICU at just over 4lbs…
15.5 months old at about 15lbs…
A now at about 25lbs…