SIGH! I am sitting at home on my own couch, in my pjs, typing this and I cannot explain how good that feels! Getting ready to head to bed, but thought I would just get everyone up to speed on the last day.
Shortly after I blogged last night, we started to see some action on the BM front. I had convinced myself that we were headed for some major intervention and I think we would have been had he not started going. I know that they had called some pediatric GI doctors, so I think the nurses were getting a little more worried than they were letting on. So, we started changing diapers and trying to get him settled for bed but the IV line kept beeping and saying that it was kinked. Turns out that Kai had basically yanked his IV out of his head. My stomach dropped because it's no secret how much I HATE IVs. My poor little man was so uncomfortable that I wasn't sure if my heart could handle having to put him through another iv placement. Superdad to the Rescue!!! My awesome hubby volunteered to stay again at the hospital so I could get away before the iv placement started. I just can't bear the thought of Kai being in pain and having to hold him down while he is screaming is just more than my heart can handle. So, feeling so torn, I got the heck out of there. I was pretty sure we were going to be there a few more days what with this new issue popping up, and Kai had pooped all over his blankys so I popped some laundry in and took a shower, all the while hoping to hear the phone ring and Sam telling me that the IV was in, Kai has emptied his tummy and they were both going to sleep. Finally about midnight, I sent Sam a text to get a status update and he said that they had tried a couple times, had someone from PICU come down and try, and no one had been successful so they were waiting for the flight nurse again, and that I should just go to sleep so that one of us wasn't exhausted in the morning. I was so tired, so I finally agreed after he promised to call me if Kai needed me.
I woke up feeling MUCH better and texted him right away to see how his night had gone. His response was "Night was horrible and we are going home"...wait a sec...oh no-my poor baby and YAY at the same time! Turns out my poor hubby got almost NO sleep last night. He said that he would just get Kai to sleep and then he would poop and make a huge mess. Needless to say, he would wake up during the changing of the sheets, blankets, diapers, drapes, etc. That happened several times and then Sam FINALLY got Kai to sleep, no poop, and was crawling into bed when the nurse came in to do vitals...GRRR! I can only imagine the frustration. He said the small amount of sleep he did get didn't come until at least 4:30. He said Kai slept for about 4 hours and then by that time, all the doctors were rounding, lab people were coming for blood draws, and that was the end of sleep!
Someone had brought breakfast to RMH today, so I ate some breakfast and made up a plate for Sam and headed up. Long story short, they apparently were happy with the "progress" Kai had made with the constipation and since he was standing up shaking his crib and acting like a wild man :), they said we could go home! Sam said someone from the ped surgery clinic came down to take a look at Kai's bum because we thought it looked kind of wierd, but they said that everything looked fine. We packed up some stuff and then Dr. Menezes' PA came to answer our final questions and sign our discharge order! We headed to RMH to get our stuff there packed up. Hy-Vee had donated a bunch of stuff for lunch, so it worked out great. You don't realize how delicious things like milk, fresh salad and fresh fruit are until you eat a lot of cafeteria and greasy food! We packed and did our cleaning at RMH, then Kai and I had some lunch while Sam loaded the car, joining us when he finished. Kai and I hit up the playroom while Sam did all the checkout stuff and we were OFF for home! We decided that Jean would keep D and C one more night so we could catch our breath a little and I was thinking that we would do the same with El, but after a conversation with my mom, I decided that I needed Ellie to come home and she needed to be here too :). Sam crashed almost as soon as we got home and Kai and I just relaxed and enjoyed our rocking chair for a while. It was kind of cute. He was crawling all over the place checking everything out, and I could tell he was looking for his big brother and sisters and was a little confused as to why it was so quiet in our house and why no one was manhandling him! :) I love it! I invited myself over to Mom's for spaghetti, so Kai and I left Sam at home sleeping and headed over to surprise El. She was so happy to see us. A few minutes later she had her face buried in my middle, and when she looked up, her big brown eyes were rimmed in red and I asked her if she was going to cry. That did it. We sat on the floor of "her room" and she just cried. She was such a big girl and so brave, and I knew she was just so tired that she needed to cry now that Mommy was home. Not gonna lie...I choked back a few tears myself. It was just so good to hold her in my arms, knowing that I wasn't going to have to watch her walk away in a little while.
There is nothing like some good home cooking from your mom's kitchen when you are tired, and it was delicious. Ellie, of course, was NOT ready to go all of a sudden :) but when I mentioned seeing Daddy she changed her mind. Kai was so happy to have someone sitting next to him in the car. I looked back in the rearview mirror on the way home and Kai was holding onto Ellie's finger. Not doing anything-just holding it. Those 2 are good buddies and it's adorable in my unbiased opinion! :)
My house is a disaster, I have hardly unpacked anything, and today I am so ok with that. 2 of my babies are sleeping cozy and warm in their own beds, and 2 more will be here tomorrow so I can squeeze them. I can't wait!! I'm sure they will all be cranky and naughty since they have had to be good for so long, but maybe I will just hug it out of them! :)
On that note, I am going to snuggle on MY couch, with MY hubby, and watch MY tv and then go to sleep in MY bed only to wake up to shower in MY shower!! Can you tell I am glad to be home? :)
Tuesday, January 31, 2012
Monday, January 30, 2012
Monday Update
I wish you could see my little man now. He really honestly looks like he is about 8 months pregnant. It's funny but its not funny. Poor little guy hasn't pooped since last Wednesday. His little tummy is just so full it's pooching WAY out. Even his innie belly button has turned into an outie. So far since last night, he has had 3 glycerine suppositories, 2 doses of milk of magnesia and 2 doses of Miralax and NOTHING has worked. They just gave him an enema so we are just waiting for that to do it's thing and be prepared for the clean up!
He seems to be doing really good. I think he was having some pain in his back where his incision is because of all the pressure in his tummy. I think it really hurts to push so that's why he hasn't. We are kind of in a catch 22 because he can't really rest because of his constipation and pain, but we can't really give him anything for the pain because that is what is causing the constipation! Right now he is crawling around in his bed and standing up holding on to the sides playing with Sam. It's proving to be kind of a challenge with all the iv and monitoring cords-he's yanked them out so many times (not the IV-that stays in thankfully) that I think they have kind of just given up until he's asleep. He's actually pretty wound up-I think it just feels so good to be up and playing. He's not supposed to be up and shaking the sides of his crib like a wildman, but that is exactly what he is doing right now, so I'm guessing there will be more sedation coming his way soon. Hopefully this enema does its thing soon-I'm not sure what the next step will be if this doesn't work!
We had lots of company yesterday, so that was a nice distraction. Trav and the boys came in the morning, then Eric and Ashley brought up some lunch for us and Joe and Heather came for the afternoon and hung out for a while which was nice. I stayed here at the hospital last night so Sam could get some good sleep at RMH. Kai was really restless last night and seemed like everytime I just about fell asleep he woke up or they had to come mess with him for some reason and they he didn't want to sleep after they did! *SIGH* He finally slept from about 3:30 to 6:30 and then Sam came around 9:30 and I went back to sleep for a while, so I am doing ok. Hoping for an early night tonight, but the only thing we know for sure is that we can be sure of nothing! :)
He seems to be doing really good. I think he was having some pain in his back where his incision is because of all the pressure in his tummy. I think it really hurts to push so that's why he hasn't. We are kind of in a catch 22 because he can't really rest because of his constipation and pain, but we can't really give him anything for the pain because that is what is causing the constipation! Right now he is crawling around in his bed and standing up holding on to the sides playing with Sam. It's proving to be kind of a challenge with all the iv and monitoring cords-he's yanked them out so many times (not the IV-that stays in thankfully) that I think they have kind of just given up until he's asleep. He's actually pretty wound up-I think it just feels so good to be up and playing. He's not supposed to be up and shaking the sides of his crib like a wildman, but that is exactly what he is doing right now, so I'm guessing there will be more sedation coming his way soon. Hopefully this enema does its thing soon-I'm not sure what the next step will be if this doesn't work!
We had lots of company yesterday, so that was a nice distraction. Trav and the boys came in the morning, then Eric and Ashley brought up some lunch for us and Joe and Heather came for the afternoon and hung out for a while which was nice. I stayed here at the hospital last night so Sam could get some good sleep at RMH. Kai was really restless last night and seemed like everytime I just about fell asleep he woke up or they had to come mess with him for some reason and they he didn't want to sleep after they did! *SIGH* He finally slept from about 3:30 to 6:30 and then Sam came around 9:30 and I went back to sleep for a while, so I am doing ok. Hoping for an early night tonight, but the only thing we know for sure is that we can be sure of nothing! :)
Saturday, January 28, 2012
Crazy Day 3!
Oh my it's been a crazy day! It's 10:00 and I am just turning on the computer if that tells you anything! Texted Sam this morning and he didn't respond right away, so I just hopped in the shower to get ready, and wasn't out too long when his text back was something to the effect of "not a good night. be prepared, there is an IV in his head". Needless to say, I pretty much rushed to the hospital after that! Turns out that the foot where his iv was was starting to swell and the backup one in his hand kept kinking. I guess they had a TERRIBLE time starting another one. They would get them in fine and then his little viens kept blowing. They finally decided to try in his head and eventually had to call in a flight nurse to get one in. My poor little baby. In a way, I wished I was there to comfort him, but in all practicality, I am SO glad that I wasn't there. I don't think I could've handled it to be honest. Sam said that he was just SCREAMING and at one point he had to hold his back down while someone else held his head. It makes my stomach hurt and makes me want to cry just thinking about it. The one in his head seems to be doing great and now he's wearing socks on his hands so he doesn't try and pull it out. Claire thought that was pretty wierd that he had socks on his hands!! :)
Got to see my kiddos today! I have been missing them so much! George and Jean brought up Darren and Claire and a little later my folks brought up Ellie. I think they were scared of Kai because they didn't want to touch him or get too close. I know it's hard for them too, but they didn't do too bad. It was getting a little rambunctious in Kai's room, so Jean took over Kai duty and we took the kids to RMH to show them where we stay, etc. It was so nice being able to be with them. We took a tour, played in the playroom, ate some lunch, and then the kids and I played a game, did a puzzle, and snuggled on the couch to watch a movie while Daddy got in a much needed nap after his crazy night/morning. Ellie made a comment while we were there that "you guys get to have all the fun and do all the fun stuff" (like stay in the RMH). Then we hung out in the ICU after D & C left and I asked her again if she still thought that Daddy and I got to do all the fun stuff since this is where we are ALL day long. Her answer was a very quick no! :) Claire cried when she had to leave me and Darren kept hugging me and telling me he loved me and that he wanted Baby Kai to come home. He didn't cry but he looked so sad that i thought he would cry. Needless to say, I cried. Seeing Mommy cry made things so much worse, but I didn't want them to go either. I hate being seperated from them this long and it was a rough day to begin with so that didn't help any either. We just keep reminding them, and they remind me when I get sad too, that we are all doing this, even if we don't like it, because we love Baby Kai and we want him to be healthy.
Today was a rough day for little man too. Apparently the Dex stuff that has been working so well to keep him sedated is very addicting and if they use it too long, they have to cycle off of it gradually, so they didn't want to do that with Kai. No one told me this until much later, and I was VERY frustrated that they wouldn't give it to him, but wanted him to stay on his tummy! Do you know how hard it is to keep a VERY active little man on his tummy when he's not sedated much? CRAZY hard and very exhausting let me tell ya! By around 8 my nerves were SHOT and I was about ready to scream at the next person who was wishy washy about why they wouldn't give it to him. All they would say was that it was just for a little while and tomorrow he could move around more. No one told me WHY they were stopping the Dex. One doctor even told me that I shouldn't worry because Kai wasn't really mad at me, he was just frustrated and he wouldn't remember this at all. Honestly, at that point, I wanted to smack someone and yell "I KNOW he's not mad and I wouldn't care if he was. I KNOW he won't remember this, nor would I want him to, but that has NOTHING to do with what I asked you!!!" I didn't, but it was hard. All I knew was that he couldn't go down to the regular peds unit until he was off the dex but they kept saying that maybe he would just go tomorrow. So why won't you give him the dex for the night so we can all get some peace! FINALLY, around 8:30 or so, Dr. Mike, a resident who we really like and who we think LIVES at the hospital :) came in to tell us that they were going to move Kai since he was off the dex and they were filling up in the PICU so they didn't want to have to move us at 3 AM if someone needed our space. I asked him about the stupid dex and he FINALLY explained it to me. If someone would have told me this morning when they turned it off that it is very addicting, and Kai was nearing the addiction stage, instead of being so wishy washy I would have a few less gray hairs, but what's done is done and I feel much better. (Especailly since I just vented on here too! :))
So here we are on the regular peds floor. We have a private room and it seem a lot bigger than the PICU room. Kai doesn't have to be hooked up to so many monitors so that is nice too. They don't have to check on him as often, so hopefully everyone will get some sleep. We still can't snuggle him, but he can at least lay prone on a pillow on my lap, so I did hold him for a while today. I can't wait to snuggle and cuddle him tho! HOPEFULLY Dr. Menezes will say tomorrow that Kai can be a little more active because that would make our lives much simpler! One of the nurses told me last night that she thinks Dr. Menezes is the best surgeon in the hospital, but he is VERY strict with his patients. Yep, we got that!
Off to the RMH for me. Super Dad is staying the night again. I even argued with him this time that it was my turn and I was completely fine staying so he could go to RMH, but he insisted he is fine, so I guess I will let him spoil me! :) I am going to try to come a little earlier tomorrow so he can maybe go get a decent nap later on, so we'll see what the day holds. We have learned that you really never can tell, so we just go with the flow and try to be as positive as we can! Good night for now!
Got to see my kiddos today! I have been missing them so much! George and Jean brought up Darren and Claire and a little later my folks brought up Ellie. I think they were scared of Kai because they didn't want to touch him or get too close. I know it's hard for them too, but they didn't do too bad. It was getting a little rambunctious in Kai's room, so Jean took over Kai duty and we took the kids to RMH to show them where we stay, etc. It was so nice being able to be with them. We took a tour, played in the playroom, ate some lunch, and then the kids and I played a game, did a puzzle, and snuggled on the couch to watch a movie while Daddy got in a much needed nap after his crazy night/morning. Ellie made a comment while we were there that "you guys get to have all the fun and do all the fun stuff" (like stay in the RMH). Then we hung out in the ICU after D & C left and I asked her again if she still thought that Daddy and I got to do all the fun stuff since this is where we are ALL day long. Her answer was a very quick no! :) Claire cried when she had to leave me and Darren kept hugging me and telling me he loved me and that he wanted Baby Kai to come home. He didn't cry but he looked so sad that i thought he would cry. Needless to say, I cried. Seeing Mommy cry made things so much worse, but I didn't want them to go either. I hate being seperated from them this long and it was a rough day to begin with so that didn't help any either. We just keep reminding them, and they remind me when I get sad too, that we are all doing this, even if we don't like it, because we love Baby Kai and we want him to be healthy.
Today was a rough day for little man too. Apparently the Dex stuff that has been working so well to keep him sedated is very addicting and if they use it too long, they have to cycle off of it gradually, so they didn't want to do that with Kai. No one told me this until much later, and I was VERY frustrated that they wouldn't give it to him, but wanted him to stay on his tummy! Do you know how hard it is to keep a VERY active little man on his tummy when he's not sedated much? CRAZY hard and very exhausting let me tell ya! By around 8 my nerves were SHOT and I was about ready to scream at the next person who was wishy washy about why they wouldn't give it to him. All they would say was that it was just for a little while and tomorrow he could move around more. No one told me WHY they were stopping the Dex. One doctor even told me that I shouldn't worry because Kai wasn't really mad at me, he was just frustrated and he wouldn't remember this at all. Honestly, at that point, I wanted to smack someone and yell "I KNOW he's not mad and I wouldn't care if he was. I KNOW he won't remember this, nor would I want him to, but that has NOTHING to do with what I asked you!!!" I didn't, but it was hard. All I knew was that he couldn't go down to the regular peds unit until he was off the dex but they kept saying that maybe he would just go tomorrow. So why won't you give him the dex for the night so we can all get some peace! FINALLY, around 8:30 or so, Dr. Mike, a resident who we really like and who we think LIVES at the hospital :) came in to tell us that they were going to move Kai since he was off the dex and they were filling up in the PICU so they didn't want to have to move us at 3 AM if someone needed our space. I asked him about the stupid dex and he FINALLY explained it to me. If someone would have told me this morning when they turned it off that it is very addicting, and Kai was nearing the addiction stage, instead of being so wishy washy I would have a few less gray hairs, but what's done is done and I feel much better. (Especailly since I just vented on here too! :))
So here we are on the regular peds floor. We have a private room and it seem a lot bigger than the PICU room. Kai doesn't have to be hooked up to so many monitors so that is nice too. They don't have to check on him as often, so hopefully everyone will get some sleep. We still can't snuggle him, but he can at least lay prone on a pillow on my lap, so I did hold him for a while today. I can't wait to snuggle and cuddle him tho! HOPEFULLY Dr. Menezes will say tomorrow that Kai can be a little more active because that would make our lives much simpler! One of the nurses told me last night that she thinks Dr. Menezes is the best surgeon in the hospital, but he is VERY strict with his patients. Yep, we got that!
Off to the RMH for me. Super Dad is staying the night again. I even argued with him this time that it was my turn and I was completely fine staying so he could go to RMH, but he insisted he is fine, so I guess I will let him spoil me! :) I am going to try to come a little earlier tomorrow so he can maybe go get a decent nap later on, so we'll see what the day holds. We have learned that you really never can tell, so we just go with the flow and try to be as positive as we can! Good night for now!
Friday, January 27, 2012
Day 2
Thank you everyone of your kind comments and encouragements. They mean a lot! Kai is doing good. When they told us that he would be sedated, in my mind, that meant that he was totally asleep, but it's not. He definitely sleeps a lot, but wakes up quite a bit too. When he is awake he is quite the little bugger and it's definitely challenging to keep him on his tummy and not crawling around. He is on some medicine that the nurses call "dex" along with several pain medications, including morpine and tylonel and lots that I don't know too :) The dex is supposed to make him sleep/be drowsy. This morning they tried to lower his dose....yeah-that didn't go so well. I now know, from experience, how hard it is to keep a very active 9 month old on his tummy or side when he really doesn't want to be! They actually had to put his dose back up so he would stay resting. He is hungry ALL the time. Dr. Menezes said that he could nurse so I was so glad to do that today. However, my body isn't used to being his only source of nutrition, so he has been having formula too. The nurses are all amazed at how much he eats. :) That's a good sign right? :) Feeding him while he is laying on his tummy has it's own set of challenges, but we seem to be managing. Diapering isn't going as bad as I thought it would. They just put his diapers on backwards,and it makes things MUCH easier! :)
Sam and I seem to be managing pretty good. We got into RMH last night, so that is wonderful. Sam stayed here with Kai last night and I slept there. I was SO tired that I knew if I didn't sleep, I would just make myself sick. When I got back, I literally wiped my face with a baby wipe, went to the bathroom, took off my jeans and climbed into bed. I didn't even change my shirt or anything. I think I laid there maybe 2 minutes and was OUT! I woke up a little after 7, went to the bathroom, crawled back into bed and slept until 9:30! It was so nice, and I woke up feeling SO much better. I got my shower taken and actually felt human enough to take on the day! My awesome hubby volunteered to sleep on the little couch here last night because he knew that I was shot. Wasn't that sweet of him? I love that guy! AND he even volunteered to stay again tonight!! He headed a little while ago back to RMH to take a nap for a while and then will come back later. He said Kai had a pretty good night. Woke up a few times, but nothing too major. It's hard to tell if Kai is feeling pain. He is kind of fussy and out of it from all the sedation, but they seem to be keeping up on the pain meds, so I think that is helping. We will be in the PICU again tonight, and depending on what Dr. Menezes says tomorrow, we might be heading down to the regular peds floor tomorrow, but I have learned in this hospital not to hold my breath. It will happen when it happens and I am ok with that.
We have been getting excellent care. The nurses are VERY caring and knowledgable, so that definitely helps make us more comfortable
Little Man seems to be finally sleeping peacefully, so I think the correct amount of Dex finally got into his system. Before when he would sleep, he was still kind of restless but he seems to be pretty relaxed right now so that helps a Mommy's heart too. Last night he just couldn't settle down. All he could have was pedialyte and was taking in so much the nurse said we shouldn't give him anymore. I think he was so hungry and just wanted to be held, neither of which I could do! It was so hard-my arms literally ached to hold him, but I knew I couldn't so I just stayed by his bed and stroaked his head and his back until he FINALLY settled down about 2 hours later. Breaks a momma's heart ya know?
Other than that, not too much going on! We have had a couple visitors which is a nice distraction and I am finally getting some free reading in so there are definitely silver linings to this cloud! Sam has been watching all the movies that I am too scared to watch with him on the laptop with headphones. He gets them from the patient library here, along with the games for the playstation that is in our room. I miss my kiddos like crazy, but Ellie and I keep reminding each other that we are doing this because we love Baby Kai! :)
Thanks again for all your prayers and encouragement. I know I keep saying that, but they REALLY do mean a lot to us!
Sam and I seem to be managing pretty good. We got into RMH last night, so that is wonderful. Sam stayed here with Kai last night and I slept there. I was SO tired that I knew if I didn't sleep, I would just make myself sick. When I got back, I literally wiped my face with a baby wipe, went to the bathroom, took off my jeans and climbed into bed. I didn't even change my shirt or anything. I think I laid there maybe 2 minutes and was OUT! I woke up a little after 7, went to the bathroom, crawled back into bed and slept until 9:30! It was so nice, and I woke up feeling SO much better. I got my shower taken and actually felt human enough to take on the day! My awesome hubby volunteered to sleep on the little couch here last night because he knew that I was shot. Wasn't that sweet of him? I love that guy! AND he even volunteered to stay again tonight!! He headed a little while ago back to RMH to take a nap for a while and then will come back later. He said Kai had a pretty good night. Woke up a few times, but nothing too major. It's hard to tell if Kai is feeling pain. He is kind of fussy and out of it from all the sedation, but they seem to be keeping up on the pain meds, so I think that is helping. We will be in the PICU again tonight, and depending on what Dr. Menezes says tomorrow, we might be heading down to the regular peds floor tomorrow, but I have learned in this hospital not to hold my breath. It will happen when it happens and I am ok with that.
We have been getting excellent care. The nurses are VERY caring and knowledgable, so that definitely helps make us more comfortable
Little Man seems to be finally sleeping peacefully, so I think the correct amount of Dex finally got into his system. Before when he would sleep, he was still kind of restless but he seems to be pretty relaxed right now so that helps a Mommy's heart too. Last night he just couldn't settle down. All he could have was pedialyte and was taking in so much the nurse said we shouldn't give him anymore. I think he was so hungry and just wanted to be held, neither of which I could do! It was so hard-my arms literally ached to hold him, but I knew I couldn't so I just stayed by his bed and stroaked his head and his back until he FINALLY settled down about 2 hours later. Breaks a momma's heart ya know?
Other than that, not too much going on! We have had a couple visitors which is a nice distraction and I am finally getting some free reading in so there are definitely silver linings to this cloud! Sam has been watching all the movies that I am too scared to watch with him on the laptop with headphones. He gets them from the patient library here, along with the games for the playstation that is in our room. I miss my kiddos like crazy, but Ellie and I keep reminding each other that we are doing this because we love Baby Kai! :)
Thanks again for all your prayers and encouragement. I know I keep saying that, but they REALLY do mean a lot to us!
Thursday, January 26, 2012
Surgery is OVER!!! YAY!
As I write this, I am sitting in the oh-so-comfy hospital chairs :) in the PICU. Surgery is done! We were here at 6 this morning and everything went great. Kai slept good all night, so I just bundled him up in blankets and snuggled him on the way to the hospital. Not a good idea, I know, but I just couldn't help it this morning. Pre-surgery went fine. The anesthesiologist that came to talk to us, Dr. Austin, was VERY nice. He was playing with Kai a little while he talked to us, and when we were done talking, they were ready for Kai. Dr. Austin held out his arms and Kai went to him with no problems, intent on trying to pull Dr. Austin's mask off to find his nose. :) His brother and sisters honk when he pokes their noses, so he thinks that everyone else should too! He wasn't crying or anything, so that made it a little easier on a Momma's heart to hand him off to strangers. Of course, once he was out of the room, I cried a little. When we got to the surgical waiting room, I sat down and then I REALLY cried. Of course at that time, the "family representative" stopped to talk to us. I know I am not the only person who has cried there, but STILL! It's embarrassing, but life goes on.
There was a couple of very nice people that we talked to while we were waiting, so that is a nice distraction. I was feeling very restless, so even though I had tons of stuff to do in my bag, I went for a little walk and found a rocking chair in the patient library. Guess where I was when my mom found me later! :) I know it's wierd, but it just felt so good to sit and rock. Shortly after that, they called and said the surgery was done and they were starting to stitch him back up. Total his surgery was just over 4 hours, so that wasn't terrible. The people we were talking to were there for 8! Dr. Menezes said that everything went well. The fat was as thick as Dr. Menezes fingernail-gross, but other than that, no surprises or anything. They put internal stiches, but used glue on the outside so Mr. Kai won't even have to have stitches taken out! It took a while, but they finally called us to the ICU to see my baby! He is sedated, but occasionally awake. He's very drowsy but that's ok. They have to keep him on his side or his tummy for at least 48 hours. I can't hold him which is really hard, but he seems to be pretty comfortable. If I thought he was in pain or really uncomfortable it would be harder to not hold him, so we're managing. We will be in the ICU for a couple of days at least and then to the regular peds floor. Our nurse in the ICU is awesome. He seems very knowledgeable and compassionate, so that's comforting too.
Honestly, my brain is just tired right now. If this doesn't make sense...sorry! :) Sam just brought up my pillow, so I will take that as a sign that it's time for a nap! :) Please pray for my little man's recovery and that there are no complications so we can go HOME and have all this just be a memory. I will try to post updates on here periodically.
There was a couple of very nice people that we talked to while we were waiting, so that is a nice distraction. I was feeling very restless, so even though I had tons of stuff to do in my bag, I went for a little walk and found a rocking chair in the patient library. Guess where I was when my mom found me later! :) I know it's wierd, but it just felt so good to sit and rock. Shortly after that, they called and said the surgery was done and they were starting to stitch him back up. Total his surgery was just over 4 hours, so that wasn't terrible. The people we were talking to were there for 8! Dr. Menezes said that everything went well. The fat was as thick as Dr. Menezes fingernail-gross, but other than that, no surprises or anything. They put internal stiches, but used glue on the outside so Mr. Kai won't even have to have stitches taken out! It took a while, but they finally called us to the ICU to see my baby! He is sedated, but occasionally awake. He's very drowsy but that's ok. They have to keep him on his side or his tummy for at least 48 hours. I can't hold him which is really hard, but he seems to be pretty comfortable. If I thought he was in pain or really uncomfortable it would be harder to not hold him, so we're managing. We will be in the ICU for a couple of days at least and then to the regular peds floor. Our nurse in the ICU is awesome. He seems very knowledgeable and compassionate, so that's comforting too.
Honestly, my brain is just tired right now. If this doesn't make sense...sorry! :) Sam just brought up my pillow, so I will take that as a sign that it's time for a nap! :) Please pray for my little man's recovery and that there are no complications so we can go HOME and have all this just be a memory. I will try to post updates on here periodically.
Wednesday, January 25, 2012
Our Day of A Million Appointments~
Thought we would just keep everyone in the loop of how our day went in light of the surgery tomorrow, so here it is!
Well, it's been a crazy day, but we are finally settled in our hotel for the night. Baby Kai was a TROOPER all day long. Seemed like we had to be about 6 million different places. The poor kid couldn't even get a nap for more than 20 mins or so, but he did great.
First stop was at the Pediatric Specialty Clinic to make sure everything was ok with his bottom and the prior surgery there. We saw a PA that we have worked with quite a bit in the past and she said everything looks GREAT and was very happy with how everything looked. There was no scar tissue so that was good news. We grabbed a quick bite to eat, and next stop was the anesthesia dept to go over everything there with them. Dr. Carter said that he had helped with Kai's first surgery and said he remembered because Kai had an unusual name! :) That all went as expected and we even had a little time, so I nursed Kai and tried to get him settled down for at least a LITTLE nap. He was so overtired by that point, what with it being 2:00 and he hadn't really slept all day. I did finally get him to sleep and he slept in my arms until the next appointment with the Neurosurgery people. They of course, have to tell us all the risks and possible complications before we sign the consent forms and it almost made me cry. We have been told over and over by different medical staff that Dr. Menezes is the best of the best, and Molly (the PA from Ped Surg that we saw) even told us that people come from all over the world to see him, so that is comforting. Next stop was lab work and my tough little guy didn't even cry. He just sat on Sam's lap and was so calm. He did cry just a sec at the end, but I think it was because he wanted his arm back, not because they were hurting him. :) Next stop was the EMG dept. Basically what they did there was hook up some things to him to test the nerves in his legs. They said that it feels kind of like a static electricity shock. He did fine for the first leg, other than being a little concerned, but by the time they did the second leg, my poor little baby was DONE. He kind of looked around like 'why are all you people hurting me?' and then he cried. He did cry hard then, but that is to be expected and I was so proud of how good he had done. He was such a happy baby all day and we got lots of comments about how cute he is and what a good baby he was. He was happily waving to anyone who would wave back and talking up a storm.
We did not get into the Ronald McDonald House unfortunately, but the guy there suggested a hotel and even called to make the arrangements for us. RMH has a deal with several hotels so when they are full, patients and their families can get a discounted rate. So we are in a Comfort Suites which is very nice. Had some Texas Roadhouse for supper-yummy :) and now are just chillaxin' and playing with Little Man.
Kai is first surgery tomorrow morning, so we have to be at the hospital at 6 with surgery at 7:15. They told us it will probably take about 6 hours. We will probably just stay at the hospital with him in his room until we can get in at RMH, since he will be in ICU and their rooms are pretty good size and private. They told us today that he will be sedated for a minimum of 2 days, possibly up to 4 depending on how everything goes and then I guess we go from there!
I have a super happy little boy playing peek a boo over the top of my computer and those little laughs are just too cute to resist, so I will log off for tonight! We would value your prayers and thanks for all the kind words and encouragement. They mean a lot!
Well, it's been a crazy day, but we are finally settled in our hotel for the night. Baby Kai was a TROOPER all day long. Seemed like we had to be about 6 million different places. The poor kid couldn't even get a nap for more than 20 mins or so, but he did great.
First stop was at the Pediatric Specialty Clinic to make sure everything was ok with his bottom and the prior surgery there. We saw a PA that we have worked with quite a bit in the past and she said everything looks GREAT and was very happy with how everything looked. There was no scar tissue so that was good news. We grabbed a quick bite to eat, and next stop was the anesthesia dept to go over everything there with them. Dr. Carter said that he had helped with Kai's first surgery and said he remembered because Kai had an unusual name! :) That all went as expected and we even had a little time, so I nursed Kai and tried to get him settled down for at least a LITTLE nap. He was so overtired by that point, what with it being 2:00 and he hadn't really slept all day. I did finally get him to sleep and he slept in my arms until the next appointment with the Neurosurgery people. They of course, have to tell us all the risks and possible complications before we sign the consent forms and it almost made me cry. We have been told over and over by different medical staff that Dr. Menezes is the best of the best, and Molly (the PA from Ped Surg that we saw) even told us that people come from all over the world to see him, so that is comforting. Next stop was lab work and my tough little guy didn't even cry. He just sat on Sam's lap and was so calm. He did cry just a sec at the end, but I think it was because he wanted his arm back, not because they were hurting him. :) Next stop was the EMG dept. Basically what they did there was hook up some things to him to test the nerves in his legs. They said that it feels kind of like a static electricity shock. He did fine for the first leg, other than being a little concerned, but by the time they did the second leg, my poor little baby was DONE. He kind of looked around like 'why are all you people hurting me?' and then he cried. He did cry hard then, but that is to be expected and I was so proud of how good he had done. He was such a happy baby all day and we got lots of comments about how cute he is and what a good baby he was. He was happily waving to anyone who would wave back and talking up a storm.
We did not get into the Ronald McDonald House unfortunately, but the guy there suggested a hotel and even called to make the arrangements for us. RMH has a deal with several hotels so when they are full, patients and their families can get a discounted rate. So we are in a Comfort Suites which is very nice. Had some Texas Roadhouse for supper-yummy :) and now are just chillaxin' and playing with Little Man.
Kai is first surgery tomorrow morning, so we have to be at the hospital at 6 with surgery at 7:15. They told us it will probably take about 6 hours. We will probably just stay at the hospital with him in his room until we can get in at RMH, since he will be in ICU and their rooms are pretty good size and private. They told us today that he will be sedated for a minimum of 2 days, possibly up to 4 depending on how everything goes and then I guess we go from there!
I have a super happy little boy playing peek a boo over the top of my computer and those little laughs are just too cute to resist, so I will log off for tonight! We would value your prayers and thanks for all the kind words and encouragement. They mean a lot!
Wednesday, January 18, 2012
Amazing Encouragment Just When I Needed It!
So I'm sure you could tell from my last post that hearing that surgery was pushed back was not my best day. It was just so hard. I don't WANT him to go to surgery, but I just want it to be over and not have to stress about it anymore. His MRI was in OCTOBER so it's been a LOOONNGG wait!
I was laughing to myself the other day because I caught myself being surprised at God stepping in and putting the encouragement I needed right in front of me. When will I learn to stop being surprised?!? :) I was reading a book that I got for free on my Kindle called "Daughter of Joy" by Kathleen Morgan (VERY good book btw). As I was reading, there was a section toward the end that caught my attention. So much so that I copied it in my journal so that I can re-read it whenever I need it. In view of a couple different friends that need a little encouragement as well, I thought I would share this with you.
*taken from "Daughter of Joy" by Kathleen Morgan*
"God always has a reason Abby. It's just so hard sometimes for us to accept it". She smiled sadly. "Fear gets in the way, doesn't it? Fear of the great unknown, fear that God will require something that we cannot, or don't WANT to do. But we CAN Abby. God never asks anything of us that HE doesn't give us sufficient strength to do. And He never, EVER asks it unless its for our greater good."
"I know all of those things Ella." She sighed. "I just don't feel them in my heart anymore."
"Live them anyway," her friend admonished, a fierce light burning in her eyes. "Faith isn't grounded on emotions. It's grounded on the will. It's grounded in the act of taking up your cross and following the Lord wherever He leads, through good times and bad, through dark days and happy ones. "
"We're not tested and tempered in good times, Abby." Ella released her hand and sat back in her chair. "Our true test," she said softly, "lies in the dark night of our despair."
**Weeping may endure for a night, but joy cometh in the morning. Psalm 30:5**
This has been such an encouragement to me and again, God gave me just what I needed when I needed it the most. This isn't to say that I don't still stress about Kai's surgery and the details that need to be taken care of that go along with it, but it's no longer the intense frustration so I consider that improvement!
Things seem to be falling into place nicely for when we are gone. There are a few details that I need to get ironed out, but they are minor ones. I don't think Darren and Claire really realize what's going on. They just know they get to hang out with Grandma for a few days, but Ellie is a different story. While she is looking forward to staying at Grandma Harbaugh's and hopefully riding the bus there :) she tells me everyday that she wishes we didn't have to go and that she will miss us. Her teacher is WONDERFUL and has suggested that we e-mail each other throughout the day, so I think that will be nice for both of us! :) We have been planning skype dates and other stuff like that, so I think she will be fine, but if you wouldn't mind praying for my brave little girl that would be much appreciated as well. We are planning a "Mommy and Ellie" date to Panera and picking up the next Laura Ingalls Wilder book since her and Daddy are almost done with the 2nd one so maybe a little one on one time and some encouraging is all that she needs.
Thanks again for all the prayers and hope this encourages you and brightens your day!
I was laughing to myself the other day because I caught myself being surprised at God stepping in and putting the encouragement I needed right in front of me. When will I learn to stop being surprised?!? :) I was reading a book that I got for free on my Kindle called "Daughter of Joy" by Kathleen Morgan (VERY good book btw). As I was reading, there was a section toward the end that caught my attention. So much so that I copied it in my journal so that I can re-read it whenever I need it. In view of a couple different friends that need a little encouragement as well, I thought I would share this with you.
*taken from "Daughter of Joy" by Kathleen Morgan*
"God always has a reason Abby. It's just so hard sometimes for us to accept it". She smiled sadly. "Fear gets in the way, doesn't it? Fear of the great unknown, fear that God will require something that we cannot, or don't WANT to do. But we CAN Abby. God never asks anything of us that HE doesn't give us sufficient strength to do. And He never, EVER asks it unless its for our greater good."
"I know all of those things Ella." She sighed. "I just don't feel them in my heart anymore."
"Live them anyway," her friend admonished, a fierce light burning in her eyes. "Faith isn't grounded on emotions. It's grounded on the will. It's grounded in the act of taking up your cross and following the Lord wherever He leads, through good times and bad, through dark days and happy ones. "
"We're not tested and tempered in good times, Abby." Ella released her hand and sat back in her chair. "Our true test," she said softly, "lies in the dark night of our despair."
**Weeping may endure for a night, but joy cometh in the morning. Psalm 30:5**
This has been such an encouragement to me and again, God gave me just what I needed when I needed it the most. This isn't to say that I don't still stress about Kai's surgery and the details that need to be taken care of that go along with it, but it's no longer the intense frustration so I consider that improvement!
Things seem to be falling into place nicely for when we are gone. There are a few details that I need to get ironed out, but they are minor ones. I don't think Darren and Claire really realize what's going on. They just know they get to hang out with Grandma for a few days, but Ellie is a different story. While she is looking forward to staying at Grandma Harbaugh's and hopefully riding the bus there :) she tells me everyday that she wishes we didn't have to go and that she will miss us. Her teacher is WONDERFUL and has suggested that we e-mail each other throughout the day, so I think that will be nice for both of us! :) We have been planning skype dates and other stuff like that, so I think she will be fine, but if you wouldn't mind praying for my brave little girl that would be much appreciated as well. We are planning a "Mommy and Ellie" date to Panera and picking up the next Laura Ingalls Wilder book since her and Daddy are almost done with the 2nd one so maybe a little one on one time and some encouraging is all that she needs.
Thanks again for all the prayers and hope this encourages you and brightens your day!
Wednesday, January 11, 2012
Change of Plans
Just thought I would I would let all my loyal followers know about our most recent change of plans. Got a call today from the Neurosurgery clinic and they canceled Kai's surgery for next week. They had a more urgent need and pushed him back until the following week. I wanted to cry. I am just so ready to stop thinking about this and stressing about it! Guess there isn't much I can do about it, so we will just go with the flow. Now all the arrangements need to be redone, etc, but I guess that's not insurmountable! So now we head up on Wednesday the 25th for his pre-op work up and they surgery on the 26th. We appreciate your continued prayers!
Tuesday, January 3, 2012
Our Spur of the Moment Mini Vaca!
Saturday morning was the kind of morning that I love. We were all just chillin' in our jammies, breakfast was eaten and cleaned up, and the kids and I were playing a game that we had gotten them for Christmas. Sam was on the computer and mentioned that we could use his Hilton Points and go to a hotel for a couple of days. I thought that would be so fun, and long story short, we decided to go for it! We packed up what we would need, and headed for Dubuque! We stopped for supper at Carlos O'Kellys and then headed to the hotel. We got there around 6, so we had plenty of time to get settled and headed to the POOL! It was so fun. We just played and splashed and relaxed in the "hot pool". Kai is a little fish and LOVES being in the water-even the pool where it was NOT so warm! :) Then it was warm cookies for a snack, and into the shower, which was, according to my kids, AWESOME! We ended up in a handicap accessible room, so the shower had a detachable head and they loved playing with it. I love how the small things can make them so happy.
The night...well, not so restful. The kids were all understandably excited so it took them a bit to settle down, but it was ok. I had downloaded Monopoly on my Kindle (free app of the day is AWESOME! :)) so Sam and I sat in the dark on our bed and played a killer game of Monopoly. It was so fun, especially since I won! :) The beds at Hampton Inn are VERY comfy, so sleep was easy to come by. Kai, however decided that 3 AM would be a great time to be awake! Little turkey would NOT go back to sleep so that means Mommy doesn't sleep either! Finally about 4:15 he finally went back to sleep, but it kind of made for a tired Mommy! The hotel had breakfast, so the kids thought all the choices were so great. Again with the small things. :)
We watched cartoons for a while, and then got dressed and headed out. Played at the mall playplace a bit and then headed to Jumpin' Janes. It's a place in Dubuque that has all these huge inflatable slides and bouncy houses, etc. The kids LOVED it and being that we had absolutely no agenda, we could stay as long as they wanted, which turned out to be 4 hours! It actually went by pretty fast and we all had a lot of fun. It was fun to see the kids interact with Kai too. They would pop out from behind something or other and he would just laugh so hard that you couldn't help but laugh with him. They, of course, love that reaction, so they would keep doing it and he would keep laughing until we all couldn't laugh anymore. It was just such a fun time. Back to the hotel to watch a movie and have a little relaxing time, then supper at Pizza Ranch and back to SWIMMING!
We were getting dressed and I had my swimsuit bottoms on, but hadn't gotten the top on yet, so I was just wearing my oh so lovely nursing bra. I (jokingly of course) commented to Sam that maybe I should just wear that beautiful outfit to the pool. Darren piped right up and said "Mommy! That's a good idea! Then you could relax and feed Baby Kai at the same time!" LOL! While that may sound good in theory Son, I don't think the rest of the hotel guest would appreciate that on SO many levels! :)
Kai again decided that sleep was not necessary that night but after I finally got him settled, I couldn't go back to sleep! I laid awake until close to 5, but everyone slept until almost 9, so it wasn't terrible. After breakfast, we loaded everything up and headed to the Mississippi River Museum. The kids had been there this summer with Grandma and Papa Brandt but it had been a REALLY long since Sam and I had been there, and a LOT had changed! It was fun and the kids loved the fish and other animals. Papa George joined us there, so the kids loved that-especially Claire Bear who LOVES her Papa! :) They were sad that Grandma couldn't be there, but we understood that she had to work. While there, we watched Polar Express in 4D. I was a little concerned, because with all of the activity, my poor kiddos were pretty tired by this point, and I knew they wouldn't last through the whole movie, but then the lady told us it was just snippets and only lasted 15 minutes so we bought tickets and in we went! It was so neat! Water as it was "snowing", smells of hot chocolate and cookies, cool breezes when you went "outside", and rumbly seats when the train was sliding on the ice! I think the kids really enjoyed it-I know I did! :)
That seemed to be the breaking point. I think sitting in the dark theater made them tired, and it WAS after 3 and we hadn't had lunch, but they were holding up VERY well. I didn't want to push it too far, so we said goodbye to Papa, headed to McD's for supper and then home!
It was such a fun trip and I love it that it was spur of the moment. I hope we can continue to do things like that and that someday my kids can look back and say "Remember that time that we just packed it up on the spur of the moment and went to a hotel for a couple days? That was so fun!" Plus, it was pretty cheap since the hotel was free with points and we used Christmas money for the rest!
I will try to post some pics, but for right now-laundry calls and grouchy kids are quite tired! :) Happy New Years! :)
The night...well, not so restful. The kids were all understandably excited so it took them a bit to settle down, but it was ok. I had downloaded Monopoly on my Kindle (free app of the day is AWESOME! :)) so Sam and I sat in the dark on our bed and played a killer game of Monopoly. It was so fun, especially since I won! :) The beds at Hampton Inn are VERY comfy, so sleep was easy to come by. Kai, however decided that 3 AM would be a great time to be awake! Little turkey would NOT go back to sleep so that means Mommy doesn't sleep either! Finally about 4:15 he finally went back to sleep, but it kind of made for a tired Mommy! The hotel had breakfast, so the kids thought all the choices were so great. Again with the small things. :)
We watched cartoons for a while, and then got dressed and headed out. Played at the mall playplace a bit and then headed to Jumpin' Janes. It's a place in Dubuque that has all these huge inflatable slides and bouncy houses, etc. The kids LOVED it and being that we had absolutely no agenda, we could stay as long as they wanted, which turned out to be 4 hours! It actually went by pretty fast and we all had a lot of fun. It was fun to see the kids interact with Kai too. They would pop out from behind something or other and he would just laugh so hard that you couldn't help but laugh with him. They, of course, love that reaction, so they would keep doing it and he would keep laughing until we all couldn't laugh anymore. It was just such a fun time. Back to the hotel to watch a movie and have a little relaxing time, then supper at Pizza Ranch and back to SWIMMING!
We were getting dressed and I had my swimsuit bottoms on, but hadn't gotten the top on yet, so I was just wearing my oh so lovely nursing bra. I (jokingly of course) commented to Sam that maybe I should just wear that beautiful outfit to the pool. Darren piped right up and said "Mommy! That's a good idea! Then you could relax and feed Baby Kai at the same time!" LOL! While that may sound good in theory Son, I don't think the rest of the hotel guest would appreciate that on SO many levels! :)
Kai again decided that sleep was not necessary that night but after I finally got him settled, I couldn't go back to sleep! I laid awake until close to 5, but everyone slept until almost 9, so it wasn't terrible. After breakfast, we loaded everything up and headed to the Mississippi River Museum. The kids had been there this summer with Grandma and Papa Brandt but it had been a REALLY long since Sam and I had been there, and a LOT had changed! It was fun and the kids loved the fish and other animals. Papa George joined us there, so the kids loved that-especially Claire Bear who LOVES her Papa! :) They were sad that Grandma couldn't be there, but we understood that she had to work. While there, we watched Polar Express in 4D. I was a little concerned, because with all of the activity, my poor kiddos were pretty tired by this point, and I knew they wouldn't last through the whole movie, but then the lady told us it was just snippets and only lasted 15 minutes so we bought tickets and in we went! It was so neat! Water as it was "snowing", smells of hot chocolate and cookies, cool breezes when you went "outside", and rumbly seats when the train was sliding on the ice! I think the kids really enjoyed it-I know I did! :)
That seemed to be the breaking point. I think sitting in the dark theater made them tired, and it WAS after 3 and we hadn't had lunch, but they were holding up VERY well. I didn't want to push it too far, so we said goodbye to Papa, headed to McD's for supper and then home!
It was such a fun trip and I love it that it was spur of the moment. I hope we can continue to do things like that and that someday my kids can look back and say "Remember that time that we just packed it up on the spur of the moment and went to a hotel for a couple days? That was so fun!" Plus, it was pretty cheap since the hotel was free with points and we used Christmas money for the rest!
I will try to post some pics, but for right now-laundry calls and grouchy kids are quite tired! :) Happy New Years! :)
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