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…
Am I ever happy that A’s nurse was here last night! He had a pretty rough night with vomiting bile, a nose full of boogers and just plain irritability! I did hear him at 2am at which point he was up until about 3am. Then from 5am until 7:40am she had to sit in his rocking chair and hold him. By the time she left at 8am he was back asleep so I decided to cancel his physio for today that he was to have at 10am. Good thing I did because he didn’t get up until about 10:15am. He actually doesn’t seem to be that bad right now except for sounding a bit congested. This whole thing brought me to thinking about the RSV shots that he has received for the last two years. I really didn’t think he would qualify this year as he isn’t on oxygen anymore and he hasn’t been hospitalized with pneumonia or anything of the sort. I called his doctor this morning and he is on the list! This is awesome news and can help me relax a little bit!
On Saturday I took A with me to go and meet a photographer that Lisa had recommended to me. I was FINALLY able to walk away knowing that this IS the one that I want there on my wedding day! Her work is absolutely amazing and there isn’t a doubt in my mind that I won’t be extremely happy having her do our pictures. So thanks Lisa for helping me make one of the biggest decisions for my day!
Saturday night we all just settled in and watched a movie. Or should I say tried. LOL A is constantly wanting to go and doesn’t just sit on my lap anymore when I want him to. The happiest place for him is the floor! He loves the freedom of being able to move around and not have any boundaries. However with his feeding tube this is difficult at times to do!
Here he is being the little monkey that he is…
Yesterday was a typical Sunday around here. Just hanging out and not doing much of anything!
Still no word on the MRI from London. I called there on Friday and got ahold of the secretary and she told me that he was in a meeting until 4pm (when they close) but that she would have him call me. Nothing. And still nothing from he respirologist at Mac either.
It has been a VERY busy few days around this place! Tina came down on Thursday night from Windsor to come with me to look at three different places for the wedding. We looked at two on Friday and one on Saturday and I think I have my mind made up on which place I would like it. It was so exciting to go into these places that were set up for weddings and knowing that one day it will be my wedding! It was so nice to have another opinion so thanks Tina for coming down!!!! It is very greatly appreciated! And thanks Shelly for coming to watch A for the day on Friday so that we were able to get things done!
The one place that we went to was the Pines in Cambridge. It was absolutely gorgeous, but the lady that I was supposed to meet with didn’t show up! I was very disappointed because she wasn’t very nice on the phone and therefore I had said that she would really have to step it up at the viewing. Well no show means no go for me! It is too bad too because it was soooo nice. I would have been pretty upset had that been my wedding set up and there are people walking around inside unattended. After about fifteen minutes of wandering around with no one to be seen we found the chef in the kitchen. He helped us a bit but it didn’t make up for the owner not showing.
Yesterday was definitely a lazy Sunday. Everyone needs those once and a while though. Today made up for that. We decided to take A to the CNE in Toronto. I was really looking forward to the air show however we were stuck in traffic for a LONG time to get to the parking lot. We left at 12:30pm and didn’t get out of the car at the Ex until 2:30pm. Our friends Shawn and Karen came with us along with their kids Payton and Riley. We got to see the planes but not from very close up. It was so loud and really something to see! I was surprised that A was okay with the noise but he did look a bit confused. The rides were pretty noisy and the first one we stopped by A was pretty scared and pouting.
It ended up being a VERY hot day and not really expected. It was almost too hot to be walking around for that long but A did well. However he did have tons of vomiting which I think was due to the heat and the sun. But as you can tell by the pictures he was still pretty happy.
This picture was from the other night but it was very cute how he was copying sticking out his tongue…
A on the merry go round! He wasn’t too sure what to think at first when it started moving but he did well.
Payton and Riley driving…
I wish I knew what he was thinking sometimes…
J took Payton on the graviton. She had never been on rides before but didn’t have any problems getting onto them!
Well it has been a crazy week around here! A’s tube that he had placed in London just does not want to stay in the spot that they marked it and it is driving me crazy! He has had a lot of vomiting of thick mucus and a couple of times he had projectile bile. Really gross stuff and frustrating when I don’t know why. I can only assume that his gut is irritated from having the new tube placed.
Wedding plans! AHHH I feel like I don’t have enough time to do everything and it is still so far away. The date is set and I have three places that I am looking at next week. My mom and I are also going to a bridal show in September so hopefully I will be able to book the DJ and the photographer then. I am SO excited about this day and I can’t believe still that it is going to happen! J and I have also picked out where we would like to go on our honeymoon so that is just one less thing to worry about. This day has to be absolutely perfect and I know with everyone involved that it will be just that!
So A has been impressing me this week with yet something else that is new. He now will sit in his swing and look at his feet! There was also one night that he was actually trying to get them and it was so obvious my the determination in his face! I was almost jumping up and down as this is a HUGE step if he was to start touching his own feet! I couldn’t catch a picture of it, but here he is in the swing…
Monique his physiotherapist was here the other day and she just cannot believe how well he has done over the summer. He is getting so much stronger with pulling his head forward, holding his head up, standing nicely, sitting nicely (supported) and just everything! She also told me that I am in the 1% of parents that she sees that are totally into their kids, advocating for what I believe is right and the knowledge that I have. So that was a very nice comment from her. I guess it just isn’t something that they see all of the time.
So today I took A to meet Darcy Tucker at the Future Shop that just opened here. For those of you who don’t know who he is, he plays for the Toronto Maple Leafs. I had also written him a letter and wasn’t sure that they would take it, but they did. My mom told him that it was a very special letter from Ashton and he smiled and said okay. We stood in line from about 10:45am until 1:30pm to meet him. It was raining when we first arrived but then it cleared up which was good.
Waiting patiently with grandma…
Smiling at grandpa…
Still waiting patiently, but almost there!
The line moved quickly because he was just signing his name…no pictures with him or anything specific being written…
Looking at A…
Signing A’s hockey stick…
Grandma telling him about the letter…
Grandpa getting another stick for me signed…(my letter is under the sunglasses!)
A HUGE happy birthday to Alina and Sophia today! They are now 2 years old and both have made amazing progress since being born at 26 weeks gestation weighing 810 grams and 790 grams respectively.
I can’t wait to see you guys again and big hugs and kisses from A and I!
So Thursday was our BIG day in London with the movement disorder doctors and the neurologist. I had been worried sick about this appointment but at the same time I was eager to find out what his MRI showed from McMaster and then the new one that he had this past May at Toronto Sick Kids.
I had left here at 2pm for the 4pm appointment. Of course there had to be a huge accident so I didn’t get there until 4:20pm. I get into the room and all of the docs come in. They said “well we have some bad news…” and I said “let me guess, you don’t have the MRIs?” Yep. No MRIs to look at. Toronto didn’t do the MRI they were supposed to and McMaster wouldn’t send his one over. Didn’t do it?! A can NEVER have another MRI now because of the magnet in his skull. They better have something! I was so FLIPPIN mad!!!!! I drive all the way there alone with A to find out NOTHING! I don’t understand how all of this bullshit happens with A. Why do we have SO many issues with hospitals and doctors!?! I just don’t understand. So out of the 20 minute appointment that we DID have I was told that A has dystonic cerebral palsy. hahaha are you kidding me?! Thanks for the information that I already knew!
So the last appointment we had with the docs in London they told me that they could guarantee that As would have PVL or something happening with the basil ganglia. I had asked “what if nothing shows up…then what?” And I was told then that A would be a mystery. WELL this time they told me that they would try and get the one that A had done for his implant and if I didn’t hear from them in three months to call them. Three months?! They then went on to say that even if the MRI was fine it didn’t change that he had CP. What about the mystery? Well it doesn’t matter they said. The damage could be in the nerves and cells. Hmmmm sounds strange to me. I am not giving up on my fight and one day I WILL succeed!
After leaving London VERY upset I drove to C-town. Grandma and grandpa were taking A for the weekend so that I could go on my much needed girls weekend near Grand Bend. Tina came to pick me up and we headed out about 8pm.
I had an AWESOME time. It was so great to know that A was being taken care of and that I had NOTHING to worry about for once. It was so strange just doing nothing and hanging out. Sleeping was strange too! It was SO quiet and dark and that is NOT something that I am used to here at home. We all went and spent the day at the beach on Saturday and had great weather. There was eight of us girls and I can’t wait to do it again next year! I wish I had taken more pictures but here is what I have….
Sunday A and I left C-town at 2:30pm and I was home at 4:30pm. I could hardly believe that it only took two hours but we usually stop so it was very quick just doing it straight!
A didn’t sleep the whole ride home and wasn’t very happy either. I had to stop twice because he was vomiting so much that he was choking. NOT a fun ride to do alone that is for sure!
Finally after getting him in the door and changed he went to sleep. That was at about 5pm. He slept until 8:30pm!
After his bath and brushing his teeth he pretty much wanted to go back to bed. Daddy spent a bit of time out on the balcony with him watching the stars and that was it…he was just exhausted. And this morning at 8am….
Well I have some very exciting news! On Tuesday night I was giving A a bath and he rolled from his back to tummy for the very first time! YAY! He is so active in the tub and it happened so fast I couldn’t believe it. I went into a bit of panic mode considering he was face down in the water but I quickly grabbed him and turned him over and he was laughing! So at the age of 25 and a half months he did yet something new to prove that he CAN do it!
So yesterday he was back to his normal self after having a fever on Tuesday and being pretty cranky. However today he is back to the fever, gagging, vomiting and just being plain out fussy. I really don’t know what to think is happening but hopefully it is something that will clear on its own.
Yesterday actually was kind of funny because A was just plain old bored. I could tell by how he was acting that nothing was pleasing him. I had him in my room while I cleaned and he didn’t want to be there. I had him in his room and he didn’t want to be there. I took him for a walk which was okay for a while but not long enough! Finally I decided to pull out his swing which he hasn’t been in for ages! And voila, look at what it did to him!
After a nice little nap he was happy! YAY for the swing. So I have decided to keep it within reach. Funny how after a while of not using something they are really interested again.
Shelly was here today to play with A. He wasn’t really into playing today and just didn’t want to do much. I of course had a doctors appointment so I thought getting him out for a bit might help him. He was not happy! I got through my checkup fine, needle included! LOL I do however have to go and get my eyes checked because I find myself squinting a lot of the time when I am watching TV or reading from afar. Should be interesting.
After coming home I tried to get A to sleep because he was SO tired but he just wasn’t comfortable. I gave him some advil thinking that might help him but it didn’t either. It is so hard when he is sick and I just don’t know how to make him feel better. Finally I took him to my bed and laid down with him. He went right to sleep! What a little stinker. It’s okay though because he isn’t EVER in there at night and I wouldn’t start that habit.
So I can also add to my list of things that I have noticed since A has had his implant activated. Lately he is very pouty and scared of things that he never was before but he also gets upset when I walk away from him. He can be content when I walk into his view but as soon as I walk away he starts fussing. It is kind of cute because I always wondered if he really knew that it was “me” and now I know! He also does this at night when I go into his room. He is fine until I walk away and then he has his pout and cry that just make me want to cry too! I just have a hard time understanding why all of these new reactions were not there without hearing. Seems kind of strange to me.
So our holidays are over now. We headed down to C-town on Friday to spend the weekend with grandma and grandpa S. Aunt K also came down to visit with us. It was great weather and A got to go swimming again!
On Saturday morning Aunt K and I went for pedicures. It was my first time ever getting one and it was so nice!!!
A in his pony walker and getting kisses from Cujo…
On the car ride to C-town…
A sitting outside looking as cute as ever!
Hanging out with grandma…
Pony walker time!
Aunt K entertaining him…
A and Rocco…
Being the silly little ham he can be!
A absolutely LOVES bath time and grandma LOVES to give him baths! He had water everywhere and grandma was a little wet too. 🙂 Grandpa helped out on this one too…
A trying to rock his chair…
We got back late on Sunday night and A went right to bed. Yesterday A was back into his regular busy schedule with appointments and workers.
Playtime with Shelly…
Today was also the first time that he had his auditory verbal therapy with Deb again. She had seen him last before his implant surgery and now we are back at it. With having the implant now, we have to sit around the table with him so that we can all take turns making the sounds or singing to A. He wasn’t feeling the greatest but did a great job. He started to run a low grade fever and his vomiting was starting.
Therapy with Deb…
Burn Rubber baby!
Last night was pretty rough for A. He was up vomiting a lot and it is obvious that he just isn’t feeling well. He had physio this morning and pretty much the whole time he had his eyes closed and was fussing. Liz was also here to weigh him and he is 22lbs 9oz, so down one ounce from the last time. This is the second time in a row that he has lost weight. Not too concerning to me though as he looks very healthy. We also measured him and he is 31 inches! That means that he has grown by two inches since last time!! Could also be the reason he isn’t gaining. Not to mention the fact that this little guy is constantly moving around! I cannot get over how active he is during the day now. If he could get up and run he would!
So the implant was turned up to the next program on Sunday. He has done well with it and isn’t jumping when it is turned on. Deb was very pleased to see how well he is doing with turning to sounds already. I cannot get over how much his being able to hear has changed his personality. He pouts a lot now and can even act scared of toys or different things. This was something that he NEVER did before!
At day 16 of hearing age I am very impressed. I was thinking that I wouldn’t notice anything for a long time but I already can. Recognition and imitation is going to take much longer but hey that is okay because all that matters is that my little man can hear now! I am so amazed at what this has done for him!
Well I thought I would do a post before J and I head out for the night!! Yes, the night! Grandma and grandpa are taking him and the dogs until we are back tomorrow!
So we have already gotten good use out of A’s bike trailer. We have had him out almost every night for a ride and he seems very content in it as long as it is moving. It is really nice to be able to do things as a family that we probably never thought that we would be able to do at one point.
Friday Dawn was here (A’s PSW) and she brought him some new toys that she had found while she was out and thought that he would like! She found this little cat that makes the “meow” sound and he LOVES it! Very nice of her to do for him.
So A has started with his vomiting again. Very frustrating for me to understand because nothing has changed since he had this new tube put in. Mind you, it isn’t at the amounts that is was a month ago but enough that it is affecting him. I really wish that there was something that I could do to fix it for him.
Speaking of reflux, that has been a “hot” topic in a group that I am part of. A lady had asked a question about reflux for her daughter and a few of us replied. She had wondered if it could also affect the childs breathing. I wrote back stating that it definitely would cause issues with breathing and the upper airway along with pain and discomfort. I had also wrote how A has had life threatening events related to his reflux and that I wish there was a cure for it. Well it all began there. I had another mom tell me that “there is a thing called a fundo and that cures reflux.” Are you kidding me?!
Now, anyone that knows me knows that I do a TON of research on all of A’s issues. There is NO CURE for reflux! This is a very sensitive topic for me because I have been dealing with it now for a very long time. If there was a cure for reflux then there wouldn’t be babies/children/adults suffering every single day. There wouldn’t be babies/children dying from this nasty diesease. And most importantly, if this WAS a cure then A would have had one a LONG time ago!
Don’t get me wrong, I do know moms from my reflux group that I am part of that have had great success with the fundo. BUT and this is big BUT there are way more kiddos that have had one done and now have more issues than they did before. And that is not something that I am willing to put A through. Plenty of these kids have had to have the wraps redone. Some three, four times. Some kids have retched so bad (retching can be a side effect) that they end up with their feeding tube out of their mouths! One little boy was retching so bad he spit out a staple. Why on earth would I want to take these chances with A?!
Anyhow, I am off to get ready for my night of partying!
So we had a pretty great weekend with A! He is doing even better than he was if you can believe that! I am happy to report that he has maybe vomited four times in the past eight days (since I pulled his tube out)! I am soooo happy! And it is very obvious that he is much happier. We had started him on 30mg of prevacid after about four weeks of his non stop vomiting (about 15 times a day) in hopes that it would help him. Of course it didn’t. So I am thinking now that he has the new tube and the extra medication that it is really helping him. I am so frustrated that I am never listened to, as I told them from the start that the tube wasn’t right.
Anyhow, A’s sleeping is also better. On Saturday he actually went down for a nap at about 12:30pm and I had to wake him up at 4:30pm! Then Saturday night he went to bed at 10:30pm and did not wake up once ALL night until 11am! Yes, you read that right, 11am!
Grandma and grandpa S came down for the day on Sunday and we had a good visit. We went for a walk with A to timmies since it was so nice out. We then headed over to grandma and grandpa C’s for a barbecue. Uncle S and Andrea were also there. We got a nice surprise when we got there from Uncle S. He went out back and told us to come out there. He had bought A a bicycle trailer! He said that is what uncles are for when I told him that he didn’t have to do that. However, I do not think that the one he bought is going to work with A. I tried him in it today with some padding and so on and he just didn’t sit right. And that was without a helmet on. So when you add in the helmet his head would be too far forward, and he has problems breathing that way. It was a very nice thought though! I will be checking out the place in Guelph that makes the trailers and see what they can come up with for him.
So we had a great dinner and a good time with all of us together. Grandma and grandpa S headed out at 9pm and then we left shortly after to come home. A had been up ALL day yesterday! He did fall asleep in the car just as we were pulling into the parking garage, but I had to wake him to give him his puffers and put on his pj’s. I had put him into bed about 10:30pm, but he did not want to sleep. After about thirty minutes of him fussing unless I was standing in there I just brought him back out into the living room. He was finally in bed asleep just before midnight so I went right to bed. He did well last night too with his sleep and was up this morning at about 9am.
Well I am happy to report that A has been more like himself as of yesterday. He was MUCH happier and I could tell that he was definitely feeling better. I am feeling myself now too. I however am sad to say that the vomiting issue with A has NOT got any better. I was hoping that maybe the little bug that I thought we had was contributing to the vomiting but I was not so lucky. I really don’t even know what to say anymore about this problem as it is very frustrating to me.
On another happy note, Joyce is back! She came Wednesday night and it was nice to sleep ALL night! A was very happy to see her as well. She really has been missed around here that is for sure. Sometimes you don’t realize how much you appreciate things until they are gone. And the six weeks without her was enough to make me see how much I really do appreciate her coming here during the night!
Some pictures from yesterday…playing with grandma…
Well today was the day that we went to Mac to see A’s GI doctor to try and figure out what to do about his reflux. With all of A’s issues it is difficult to figure out what is going on and when. I have looked back through my journal, and A had his tube changed on February 15th. On the 17th the vomiting of formula started. On the 21st of February he was admitted to hospital with vomiting, fever and a ton of movements with agitation. He had an x-ray at that point as I was concerned that something with the new tube wasn’t right. However things looked okay. I had asked for a contrast study but they do not do them in Guelph. Go figure.
Anyways, it seems that at that point all of the issues really started. So, his GI doctor said that she is going to put in a form to have a contrast study done to see what is going on with the tube and if it is in the correct place. I had told her my problems that I have had with a certain radiologist and she knew exactly who I was talking about. There is also the one nurse, and the same thing. She knew who I meant. I find this very sad that a doctor knows who I am speaking of. This obviously means that more people have had problems with them. I just wonder why nothing is ever done with people like this. So I should hear this week when the contrast study will be, she said hopefully next week. She also said that she wants to be there as well so I was happy to hear that.
Now, if the tube looks a bit off then she said they will change it and see how things go after the change. If things are fine then we will either have to try a motility drug called cisipride which I am not keen on. It is NOT available on the market and has to be special ordered. It was causing cardiac issues in babies/children who were taking it. So to get it, A will have to have an ekg and then the government has to approve the drug for him. I also would have to sign forms to get it. Then one month after starting the drug he would have another ekg.
If we don’t go that route, it looks like we may have to go the fundoplication route. This is also something that I do not want to do. But with the spell that he had on the 4th, it is very concerning and something needs to be done. So we will see what happens. I am not thrilled with either decision that I will have to make.
A has been much better today with the vomiting than he was all weekend. We were supposed to go for a playdate with Alina and Sophia before seeing GI but we kind of mixed up the dates. However I would not have ended up going as I was not feeling the greatest today. I think that A and I both have had some sort of stomach bug happening.
We stopped by the NICU to see if anyone was on, but no luck again today. I have been waiting for A’s first neo doc to come back (he goes away for months every year) but he had already gone home. When the front desk paged him, he called and wanted to talk to me. So we had a nice chat for about ten minutes. He is a wonderful doctor and we were SO lucky to have him overlooking A’s care for the first good while. I cannot wait to see him again as it has been about six months, if not more.
Some exciting news, A is getting TWO more teeth!! I have been wondering lately why he has not got any new ones in so long and sure enough I noticed the one last night. The other one you can feel. They are both on the bottom, so that will be a total of eight teeth!
Yesterday when A’s auditory verbal therapist was here to work with A, I was giving her the usual update and told her about A’s first word. I was a bit nervous but I told her and she was thrilled!! She is happy that he is making new sounds and like she said, he doesn’t know what it means so it is not a big deal. She actually said to even encourage it if we can. When he says it, we are supposed to show him a truck and say “yes, truck”. (He has not said it again anyways).
I told her about A’s spell and she did warn me that sick kids might not do the implant if he isn’t stable. So that was a bit of a bummer, but at the same time I understand their concern. Every time that he is put under is a risk already and with a major surgery it makes it more complicated. So we will just have to see how that all works out as well.
Anyhow, some pics from today….I got a ton of smiles today!! YAY!
Well I guess I have been slacking a little bit when it comes to blogging but I have a new hobby! Scrapbooking! I have so many pictures of A and have always wanted to scrapbook all of his pictures. However I never knew WHERE to start so I actually never did any. I would buy things when I was out if I saw something I liked for doing the scrapbook but that is as far as it went. Well Andrea, my brothers girlfriend came over on Friday and brought all of her stuff and I did my first couple of pages. Now I am hooked. I guess it is a good thing because I have about 400 pictures just from when he was in the NICU sitting around.
Anyhow, A hasn’t been doing the greatest for the past little while as most of you know. The reflux, the vomiting, the blue spells are all starting to really have me concerned and frustrated. We will be seeing his GI doctor this week and I really hope that she is able to get him better or figure out what is going on.
Thursday I did some major cleaning in A’s room. I got rid of a ton of clothes that he doesn’t wear anymore and cleaned out all of his drawers and his closet. I had laid him in his crib while I was doing this because he seemed a little tired and to my surprise he fell asleep! This is the first time EVER that he has had a nap during the day in his crib. It didn’t last very long, maybe 25 minutes but it was exciting.
Friday his PSW came over and I was just updating her on A having his big spell when all of a sudden I thought he was going to show her what I was talking about. He was VERY off colour and not doing well. I gave him a bunch of ventolin and eventually he was okay. He did not go into a full spell but he had me very scared. I called to order some suction catheters as the ones that I have here are from when he first came home and very tiny. So my dad went and picked them up and brought them over. I thought that maybe it would help him because he sounds so “gunky” but I was wrong. I went down one side of his nose and didn’t get much out. He had tears and was very upset and I just couldn’t bring myself to do the other side. Had I have gotten a lot out the first time then I probably would have but it wasn’t worth it.
He was very upset pretty much the whole entire day and was not himself. Even Dawn had commented on how he just wasn’t right. He is fine as long as you are up and holding him but he doesn’t want to sit, lay or do anything but snuggle. Dawn had him down on the floor playing with him and then all of a sudden he had a HUGE projectile vomit. It was all over the place. There was so much that it soaked right through his clothes and got it all over her pants as well.
Uncle S and Andrea ended up staying for dinner on Friday night and A had to be shown off in his stander…
Saturday A seemed a little bit better, but still a lot of vomiting. I just don’t understand how someone so little can throw up the amount that he does. It just doesn’t make sense to me. You can tell how much it is affecting him though because he isn’t AS happy as he usually is. His naps have also shortened in length and he usually wakes up crying. Definitely NOT the little man that he was.
Twice on Saturday he also went so off colour and had this look like he had just come out of a spell. It was really strange and I don’t know what to think about it. Daddy put him to bed after he had fallen asleep on him and the minute he was put down he let out this horrid scream and when I turned on the light he was very blue and had that look I was talking about…the end of a spell. I can’t even describe it, it is something that you have to see. So I immediately picked him up and got him calmed down.
I went out Saturday night late after daddy got home from work to get stuff for my scrapbooking. While I was at Wal-Mart I walked by a little boy with his dad. He was maybe 4 or 5 and he was in a motorized wheelchair. Well my tears just started flowing. I think it was seeing this cute little guy in the chair that made me realize that one day that is going to be A. I don’t know why it hit me then, I see people in wheelchairs all of the time. I think maybe it was because this little guy was so young. I don’t think it helped that he was with his dad and they were looking at tackle boxes. The boy wanted one. So they were trying to pick one out that he wanted. It was really sweet. I really wanted to talk to the dad but I didn’t get up the nerve to say anything.
Here he is asleep on daddy late Saturday night…
So today has been another crazy day. He was pretty much good all morning vomiting wise but then it started. And boy are they ever projectile. And just tons and tons of bile. We went over to grandma and grandpas tonight to have dinner and just get out for a bit. He had a few of his vomiting episodes over there with the last one really upsetting him. I was sitting on the other side of the room and knew from the sound of it that it was projectile. Sure enough it was. More bile. He even had it coming out of his nose and was crying as well. This is also something that he never used to do (cry). It was a good few minutes before he settled down.
I have also been noticing lately that his breathing is odd. It is like he is struggling to get air into him. Very long pauses…wow, I feel like it is the beginning again when we first brought him home. It really sucks because I feel like there is nothing I can do to help him. I hate to see him this way and I am getting frustrated with doctors as well.
Now some pictures from today…as you can tell lately from my pics, A isn’t the smiley little guy he was. Don’t get me wrong, he still has them in there but you can really tell that whatever is going on with him is bothering him.
My little man is now 22 months old! (As of yesterday) I cannot even believe that in just two months he is going to be turning 2 years old!
Yesterday A’s dietitian was here to weigh him. He is now 22lbs13oz! He has been gaining 15grams per day average which is great considering that he has been at 45ml/hour for a long time now.
So today Leanne came from the company that deals with all of the equipment for special needs. She brought over the superstand for us to try using with A for a bit! It was so exciting. I really am not sure which stander I like better though. The buffalo stand that we tried a while ago was more compact than this one and didn’t take up as much room. However this one I believe gives A more support. I think this really helps with him feeling more secure. With the buffalo stander you could tell that he wasn’t really liking it after short periods of time. This superstand really helps hold him secure. I hope that it will help him feel more relaxed and able to use his hands/arms more than usual. So we will see how it goes and then we will decide which one we want to order for him.
So the reflux issue is still a problem. He has been doing a little better with the amount of vomiting but not even close to what I would consider okay. I have also noticed the past week or so how much he drops his sats. Very frustrating when we thought we were past that. It is very obvious that it is the reflux that is causing this issue. I will be taking him to see his GI next week and I am hoping that she will be able to help him out in SOME way.
Grandma was here today and she had A holding some different things…
First is his little shaker…
Grandma’s granola bar…
Grandma’s banana…look at that curious face!
Open wide!! (The funny thing was he was licking the banana!) He didn’t gag or throw up! I was so excited that I took a bit and mashed it up and then tried to spoon feed it to him. Right when it went in his mouth he threw up. He sure did like just licking it though and getting the taste that way. But hey, it was a step for him!
I just LOVE this shirt on him! I bought it at Christmas for him and thought it would be way too big for him but it fit pretty good!
A in the superstand…what is that face all about?! (Might I add that those are just the most gorgeous blue eyes EVER!)
My smiling little man…this however is the only one in the stander with him smiling. I tried and I tried but nope he wouldn’t do it. Strange since he is normally the smiling king!
The collar around his neck is not part of the standing frame. We just received that today though for him to help with support. In the stander he cannot be straight up or even close really or else he pulls his head forward and it will fall down and he can’t lift it up. So this collar doesn’t let him do this. I found that it worked pretty good in the stander because that way he could be standing right straight and not have to worry about having his head flopping down.
Well it has been a very interesting day. A didn’t get up until almost 10am and wanted to go back to sleep at about 12:30pm but I had to get him ready to take him to the ped. So things went good there. He got his RSV shot and did so well! He held his breath for about thirty seconds but he didn’t even cry. I talked to his ped about the vomiting and the low grade fever but he didn’t seem too concerned. With A I have learned how difficult it is to get answers on him. I asked him for a prescription for Zantac to add in to possibly help with the reflux a bit more. I really am starting to go crazy with all of the throwing up. The dry heaves and gagging is also taking its toll on me. It is so hard to deal with! I can’t even imagine how A feels when he is the one doing this all of the time. So we will be going back in a month to tell him if there is any difference with the Zantac. I am not too hopeful as it is only an H2 Blocker, but maybe it will give a little more relief. I know that the stuff he has been throwing up for the past month is very acidic because of the smell of it.
Anyhow today was kind of a crazy day on the Internet. There is a lot of talk still going on about what I discussed yesterday. However it has more or less turned into “would you change your child with special needs?” WOW what a debate that has caused! I was reading a blog that I do daily and it was saying basically how people are crazy if they say they wouldn’t change their premature babies life. Then it went on to saying how she hears parents of special needs children say that they wouldn’t change a thing, and she couldn’t understand that.
So I felt that I had to comment. I basically said that I was one of those moms who said that and I meant it. I said that A is who he is and if he were any different than he is now then I wouldn’t be the mom that I am and he wouldn’t be the child that he is.
I went back a while later and there was a comment back saying that she wasn’t disrespecting anyone but she just didn’t get it. Then it said that if I was comfortable watching A in pain then she was happy for me! I couldn’t believe it! I NEVER said anything about seeing him in pain. I said that I wouldn’t change him. Sure I wish I could take the pain he has away but wouldn’t any mom do that if she could?
Next a lady said she wondered if I would be saying the same thing when A is 21 years old. Give me a break! I think that my acceptance with A and his issues has brought me a lot further than some of these moms have EVER come with their child’s disabilities!
So I decided to post a question on the reflux parent group that I am part of. Of course it was directed at the moms with special needs kids. WOW, it sure has had a lot of comments! I would say it is half and half. Very interesting to me…I don’t think badly of anyone that says that they would change their children, so I don’t think it is fair to people to jump all over me about saying that I wouldn’t change a thing.
You know having A at 24 weeks, spending 227 days in the NICU, being in the PICU, finding out he has cerebral palsy, finding out that he is deaf, finding out that his eyes aren’t the greatest, having him on a feeding tube makes him the little boy that he is. This whole ordeal from June 10th 2005 until now has made me the strong mother that I am. I can’t even begin to tell you how much A has changed my life. How different I am as a person. How I look at life SO SO differently now.
Anyhow I think I have rambled on and on enough. I just get so frustrated with topics like this. How many times do I need to say that having a child with special needs is not a bad thing!??!
I am the luckiest mommy in the world to have this gorgeous, happy little miracle!!
Well today went well until about 11am. A was up at 9am and was still tired but he was fussing in bed so I got him up. As time went on he was acting irritable and fussing a lot which is unlike him so I knew he wasn’t feeling well. My social worker was here and even she knew that something was up because normally A is so happy. It was hard for us to even talk because he was so fussy and throwing up so much (I could scream!) I noticed he was warm so I took his temp. Sure enough he had a fever. I gave him some Advil and it helped with that. I am really wondering lately if he is aspirating when he vomits. Again last night it was very hard for me to go to sleep because his breathing his so loud and wet sounding. It is definitely different than what I have heard with him EVER. So then I get searching about aspirating and start getting worried that he has aspiration pneumonia. However with the fever coming down I felt much better. I think it is time for maybe another swallow study (although with him not feeding by mouth it won’t help much). I left a message with his GI today hoping that she can see us sooner than later.
I was going to cancel all of the appointments this afternoon but decided when he went to sleep about 1pm that I would just leave them as they were and take the day as it came. So at 2pm Pat came over. She is the manager of HLO, a company that I am getting a PSW through. We talked for a little bit until Dawn came who will be the PSW working with A. I was sooo sooo impressed! She was VERY nice and really was interested in A and what he is doing and what she needs to do with him. So she will be coming here every Monday and Friday for three hours each time. It is almost like I know she is a PERFECT fit for A and I. Kind of weird. Pat told me that if I am happy with how things are going and want another one to come just to give her a call. I know that some of them are willing to do nights so that is going to be an option in the back of my mind for sure. The agency that I get nursing through has no night nurses available right now because of shortage.
At 2:30pm Deb came to work with A on his hearing. It was nice for Dawn to be able to see what he does with some of his days and she seemed to enjoy it. Here are some pictures of Deb working with him. (Oh, and by the way I couldn’t believe how happy he was to play with her! It was then that I decided he didn’t need to go to the doctor’s to get checked on. It is surely an A thing to be like this!)
In this picture she was doing the little piggy’s with his toes. She had done his left foot and then right when she was done he lifted his right foot like he was telling her to do both! It was really cute!
In these next pictures he was laughing! It isn’t too often that A laughs so I was kind of dumbfounded about he whole fever/vomiting ordeal when he was doing this for Deb!
Deb is so happy with how much he has changed in the few weeks since she has seen him. It is always nice to hear how happy the therapists are with him and his progress. And she can never get over how he has such great social skills! Something he definitely doesn’t get from mommy. That is surely a daddy trait that he received!
So after his therapy session with Deb he was tired and wanted to sleep again. Dawn and I sat here and talked about lots of different things. I love how comfortable she was here and how comfortable I felt with her.
Dawn left at 5pm and A decided to wake up shortly after that. And boom it was like a different boy again! He was irritable/fussing…..so frustrating when I never know what is going on with him! I ended up getting him calm but he just wanted to be held all night. Which is fine. I love that he still wants to cuddle! I knew for sure that he wasn’t feeling well because I got out some sugar water in the bottle and he was going nuts! I had to be very careful though because it is almost like in the very beginning when he forgets that he has to breathe and swallow at the same time. He took about 40ml all together which is very impressive for a child that doesn’t take ANYTHING by mouth!
Tonight after daddy got home I went out to get A some pedialyte to run through his tube for the night to hopefully rest his tummy so he can get a good sleep. I also know that when I don’t feel well I don’t want to eat so I am sure he isn’t really too happy having formula go in constantly.
I am really hoping that he has a good sleep and is better tomorrow. It is almost like he has not fully recovered from whatever was wrong with him when he was admitted a couple of weeks ago. I sure wish doctors could figure him out.
And yay, we have a stander coming tomorrow finally! It is the one that I don’t really want to try but I figure it won’t hurt. She may bring the superstand as well but not sure yet as there are still parts on it that need to be replaced.
Well today was a good day but the time change sure did mess us all up around here! Daddy went with Uncle S to Toronto for a car show and A and I hung out at home. He slept pretty good last night. I actually can say that he has been better. His thing now at night is that he gets turned around and his legs go through the slats. Then when he wakes up a little bit and tries to move again he freaks out because his legs are caught and he can’t get them out.
His vomiting is definitely a big issue for me now. Today was absolutely crazy how much he threw up. And when he vomits now he goes completely off colour and it takes him a while to get back up. I am so concerned about his oxygen saturation’s lately. It just seems like it is one thing after another with him and no one ever has an explanation for what is going on.
This afternoon A, daddy, Uncle S and I went to the Storm game. They lost again and it was a pretty boring game. When we got home about 6pm we were all tired so laid down for a nap. A slept from about 6:30 until 9pm and then I got him up for his bath. I can never get over how happy he is when I wake him up. But he was even happier with me when I put him in the tub! As you can see he LOVES his bath. Even after the bath getting dried off he is sooo happy!
Well today has been a VERY long day for me! I had a not so good night with A as he was throwing up and gagging a lot. And this morning when he was sound asleep I had to wake him up to drive daddy to work. Grandma was here just after 9am and we got A ready to head off to Mac.
His pre-op appointment was for 10:30am and I was impressed that we didn’t have to wait and wait like the last time we were there. So the doctor decided that he wants A to have the echo done in the operating room with an anesthesiologist there, just in case anything was to happen. I am not happy that he has to be put out for the echo but it is something that they need to check. The echo is just an ultrasound on the heart but he needs to be completely still for them to get a good view and without him being put to sleep that would not happen. His last echo one year ago showed some extra blood flow in the left chamber of the heart and they wanted to keep an eye on it. I should find out next week when we will be going.
A on a tractor in the playroom at Mac before his appointment!
So after the appointment we went up to the NICU but none of A’s old nurses were on. We did get to see Ashton’s neonatologist Dr.Sant’Anna. He is an amazing man and we were so lucky to have him involved in A’s care. I truly believe that he is one of the reasons that A is still with us today. The NICU at Mac is definitely lucky to have him as a part of their team! There needs to be more doctors like him that genuinely care for the babies in the NICU. He was always so willing to listen and explain things to us.
I talked to him about my concerns with A going off colour lately but he does not think that oxygen will help him. If it was related to lungs then it would but he thinks that it is neurological. I truly trust what he says so I am a little more at ease about what has been happening. He did tell me that he is surprised at how well A is doing now (lung wise) because of the problems and difficulties that he had while in neo. So that was nice to hear. I finally got a couple of pictures of him with A!
We got back home just in time for grandma to head back to work. A had fallen asleep at the hospital and slept all the way home. I was exhausted and tried to lay down with him but he didn’t want any part of it. So now I am off to bed and hopefully for a few hours straight!
Well as you can see my little man is feeling better. He threw up formula once this morning and one time tonight but it was just mucus. He had diarrhea four times today as well. He has been a little chatter box today as well. It was kind of funny because I have never heard him make so much noise in one day! It was like he didn’t stop.
I am happy to say that he slept last night as well. And the entire night! I put him to bed last night and turned on his mobile and went to do some dishes. Within ten minutes he was out like a light on his back with no soother! (He usually only sleeps on his belly WITH his soother.) I know he was exhausted so I am not expecting some sort of miracle with his sleep habits. LOL
Daddy worked all day today and A and I just hung out and relaxed. Was nice to have him back to himself. It is so hard for me when he is so upset and there is nothing that I can do to fix it.