Just a short update. Well the surgery is complete!! I am so happy to be past the worrying of how the surgery would go. I want to say first that the delayed emptying scan that he had prior to the surgery showed that he actually had faster than usual motility so this was a great thing for me to want to try out the g tube!
Well 8am A went into the OR. I was strong up until the point that we had to say goodbye and he had a huge pout on his face. The tears started and I just felt so guilty for doing the fundo when it is something I have fought for so long. The surgery was 4 hours long and we had the top surgeon and top anethicist in with him. Grandma and grandpa S came down on Sunday and grandma and grandpa C came down just as he was taken in to surgery.
Things went awesome with NO complications. They were able to do it by lap which was great for him! Once in there they realized that A had a hiatal hernia that was pretty large so they put a few stitches in the duodenum to fix it up. They also took out his gj tube and placed a g tube.
In recovery of course we had issues with his oxygen sats. He ended up having the ICU team and the critical care team come in to see him. Every time that he was touched or he moved he dropped down to the 30s. He was on 100% oxygen and satting about 94. He was then moved up to the constant care room after the docs said that he would be better off there at that point than in the ICU. He stayed at 100% with many, many desats to the 30s and 40s. I was frustrated and so tired that I was getting irritable with the nursing and doctors. I really wanted him to go back up to the floor that he has been on the past month but they said that he had to be on the surgical floor.
At about 9pm last night I finally had them up his morphine and he seeemed to settle right down. The RT was also called in and she hooked him up to the high flow at 60% where he stayed at all night last night. The nurse that was on last night was wonderful and the ICU docs told her that she had to be right there the minute that he rang. So J, his parents and I went for dinner and then got a good nights sleep at the hotel.
This morning his mom and I came over about 7:45am and I was livid when I walked in the room! He was under his blanket completely, crying, oxygen off his face and off colour. The sat however was saying 91 but then I realized that it wasn’t even on him! I told the nurse that I had a problem with all of this once I found out WHO his nurse was and she has been great since. It is absolutely insane that he is in constant care and yet things like this happen. And then they wonder why parents have to stay and not leave?!
They have been able to wean A down to 40% oxygen with sats about 96. He is definitely more alert today and not in so much pain. I am hoping to get the oxygen requirements down more by tonight. They are going to be starting to run clear fluids through his g tube any time now and see how he does. I am so nervous about this whole g tube thing!
Anyways, I am happy things are over with and I just hope that things improve within the next few days. Thanks for all the thoughts!!!
Sunday night we headed over to watch the Grey Cup with grandma, grandpa and their friends after getting our family Christmas pictures done. WOW that was not fun and I can’t believe how grumpy this kid is when it comes to picture time! Here at home he smiles as soon as he sees the camera but yet whenever we go for photos he is the most miserable child ever! I did everything but hang upside down to get a smile out of him!
Hanging out watching football…
Notice how he is holding BOTH of his socks! Way to go A!
Well we had quite the day yesterday at Mac for A’s echo! Grandma came and picked us up at 6:30am and we were there for 7:30am. A was in a super mood which was surprising as I had to wake him up and he didn’t sleep much on Sunday night.
Mommy in her scrubs and one happy boy!
At 9am we were taken over to the OR with A. I then had a chance to talk to the nurses and the anesthetist about A being put under with a general anesthetic. I am always very concerned because he doesn’t do well afterwards coming out of it. The anesthetist decided that they would try and do the echo without the general. At 9:45am A was taken into the OR. At 10:30am the nurse came to get me to go into the recovery room to see A. I was immediately basically thrown onto a stretcher as another nurse took my coat and purse from me. A was then handed to me and it was obvious that he wasn’t doing too well. I thought that they had ended up doing the general and this was the problem.
The anesthetist then came over to talk to me about how things were done and her concern on A dropping his sats to the 50s and 60s continuously on six litres of oxygen. I said to her that this is ALWAYS how he behaves after a general anesthetic. This is when she told me that he didn’t have one. He didn’t even really have sedation. The only thing he had was a “whiff” of nitrous oxide which she said was enough to last maybe ten minutes. What?! Then what is going on?! No one knew. They were suctioning and did a breathing treatment. He went to sleep on me and was doing “okay” at this point with the odd dip into the 70s. However as soon as he would start to wake up and move he would start again with the drops.
The cardiologist came in to speak to me and that is when I got the great news that A does not have any cardiac issues! A year ago his echo showed that one of the vessels that grows in the muscle of the heart was actually turned into his left chamber and they were concerned about that. It corrected itself though so we are free of cardiology!
Finally at about 1pm A was transferred out of the PACU and into the day surgery recovery. However his dips still continued and I was getting VERY frustrated. I just don’t understand how this goes on and on but yet NOTHING is done?! Grandma was finally able to join us and A went right to sleep when we laid him on his belly and gave him his lifesaving soother. The nurse had his oxygen turned down to just under a litre and he was satting 80-84 consistent. Finally about 4:30pm he was up to 88-90 consistently. I however was not pleased with all this going on and just wanted to get to the bottom of it. The anesthetist kept coming in and was worried about what was happening. She then mentioned that he might be admitted. I of course fought that because I don’t need him catching something else up in the ped ward. I then asked what was going to be done if he was admitted. Nothing….just observation was her answer. Well I can observe him at home and we have oxygen here.
When I was talking to her later on I asked what she thought was happening. She immediately said airway issues. Thank you! That is what I have been saying for so long now I don’t even remember!!!!!! But then of course it comes down to the fact that no matter where we are (hospital) and he does this NOTHING is done. No tests are ordered and we are sent on our way. I just don’t get it.
At about 5pm A woke up and I was trying to keep him happy. The anesthetist wanted to see him awake and what he was up to before sending us home. Well wouldn’t you know it he was not happy and constantly dropping to the 60s,70s and so on. The only way to keep him happy was giving him water! Of course I automatically think he has a fever because he only drinks with a fever but nope. Probably the nitrous and all the oxygen. Grandma couldn’t give it to him fast enough! LOL
FINALLY at 6pm she said we could go as long as he was put back on the oxygen here at home and that if I was at all concerned that I would take him in. Sure thing! (I had to laugh in my head because EVEN when I DO take him anywhere there are no answers. *^$& even calling 911 didn’t get us anywhere. How sad is this?!??!
We were home about 7:30pm and A went right to sleep. He did well last night and is a happy guy today. Still on a half litre of oxygen but home….
Well this was my weekend away and I had an AWESOME time!! I dropped A off in C-town on Saturday around noon. Grandma S was so excited to have him to herself for the weekend and I was happy that I was able to get away to Windsor without having to worry!
I went to Windsor to stay at Tina and Derek’s and we were in for an awesome night of fun! Derek drove us all the way to the Palace in Detroit so that we could see Keith Urban! We had 19th row floor seats and it was amazing to see him so close. He had a stage down the center as well and when he sang there we were only about six seats away from him!
I have WAY too many pictures so I just picked some of the best ones…
Gary Allen was the opening act….he was very good too!!
After getting home from the concert we didn’t do much because we were all so tired. The clocks went back in my favor as I was able to get an extra hour of uninterupted sleep! I slept from 12:30am until 11am! I don’t even remember the last time I slept nearly that long…it was great.
Tina and I met up with Aunt K for lunch before I headed back to C-town to pick A up. He was a very good boy for grandma and grandpa and she got some great pics that I will post when I get them!
Thanks again grandma for taking A for the weekend!!!!
Now of course I can’t end a post without a picture of my little man…
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.
We had another Thanksgiving dinner tonight at grandma and grandpa C’s since they were away last weekend up North. It was VERY good! Can never have enough turkey!
A LOVES this dog! It sings and moves around…
YAY he is holding the moose! (This kid has been amazing us with how well he is doing at holding on to things lately and has the determination that you wouldn’t believe!)
He knows what scratch ticket is the winner haha…
Uncle S and Andrea…
A RARE picture of A and mommy!
And yet another rare picture of the three of us together…
Daddy play fighting with A. He thinks it is the funniest thing!
Laughing before daddy even does it because he knows what is coming…
October 7th was grandma C’s birthday!
For Thanksgiving weekend we headed down to C-town. A, Cujo and I left Saturday around noon and from the start it was not a good trip. After packing the car and getting frustrated from everything that had to fit I dropped A’s box of formula and all of the cans went rolling all over. I stopped at the gas station to get gas and a lady who couldn’t wait two seconds for me to back into the pumps almost took off the front of the car. After getting gas I was backing up once again and someone decided it would be a good idea to walk right behind the car. Of course I didn’t see her because of the dog crate in the back and I almost ran her over. I go to leave the parking lot after opening up my ice tea and spilt it all over me! Ugh I was ready to turn around before being five minutes away from home!
The rest of the drive was not fun either. My stomach was bothering me and A was not happy. With all of his fussing he was gagging a lot and twice I had to pull over on the side of the highway to make sure he was okay. All in all I got there but I will never attempt that trip alone again with so much stuff!
Walking with daddy out in the grass…
Saturday night was an absolute nightmare! Normally when we are in C-town he sleeps very well but decided that Saturday was going to be different. He was up at 1:30am and was just NOT happy. Finally at 3:30am I got him out of the playpen and laid in bed with him. Took his temperature and he had a fever so I gave him some advil hoping to get him settled. Still not happy. He almost seemed to be playing strange in the room and after an hour or so of trying to get him to sleep I took him downstairs. Same thing, fussing and pouting. I put him in his chair and then took him outside. He was fine. The same A that I know. Smiling and getting all excited.
I thought I would take him back in and try to lay down again with him. Nope he didn’t want any part of it. At 7:30am I put him in his chair downstairs in front of the TV and laid on the couch. I was probably out within minutes. 10am I was up and lasted until I had to have a nap for a couple of hours in the afternoon.
Such a sweetie!
Aunt K came for dinner on Sunday night because she had to work on Monday and wouldn’t be able to be there for turkey dinner.
Sleeping on great grandma and grandpas bed…
We were at the great grandparents for Thanksgiving dinner and A slept for the first couple of hours. He had a bit of a better night on Sunday and grandma gave me the night off!
Grandma giving him some water…
J’s cousin just had twin boys on September 7th. They were SO tiny and I could hardly wait to get my hands on one of them when she came in the door! It’s funny as time goes by how you don’t remember your own kids being so small. I mean these boys were 6.5lbs and 7lbs and they STILL seemed so small to me. A really didn’t know what to think when he first saw me holding one of them. Once he seemed to warm up to the idea he was just smiling away. It was so cute and was one of those times that I would love to be able to know what he was thinking.
A was this size at 6 months old!
Hmmm I really think A would like to be a big brother! haha