Tuesday, April 14, 2009
At around 5:30 I woke up to Nick crying. She said told me how she put him in a rolling high chair and would push him along with her to where she had to go and how he would just laugh so hard that both his arms would just jiggle up and down. She said it was so funny.
At 5:00 he started to get crabby so she rocked him and he feel fast to sleep. This is when she tried to lay him down but once she did he woke up not to happy. I knew she had to make her rounds so I took over and was up ever since. Reminded me of having a newborn lol.
The day ended up being a good one though. We got the news that we could go home if his echo came back fine. At around noon they came in to do his echo and by 3:00 we got the go ahead to come home... YAY!!! I quickly packed up his things and out the door we went. It felt so good to be home again in OUR own beds.
We made it home around 5:30 and around 7:00 Matt's parents dropped Lilly off with all kinds of stories about Lilly and how she had been. The older 3 stayed another night at my parents and took the bus from their house to school today. They came home after school today.
Last night was about the same as the last two nights at the hospital. Every time I would try to lay him down he would start crying. The only way I could get any sleep was if I had him laying right next to me in bed. Poor Matt, who actually wanted to sleep in our bed last night, couldn't because I had a bed buddy lol. Thankfully we didn't get rid of his swing. He has been sleeping pretty good in it today... then again, it could be just because he is extremely tired from not sleeping well at night lol.
Today has been much better. I got him to sit up for about 15 minutes while he plays with his toys, although I'm very close to him in case he gets tired and falls over. He also experienced rolling over and was NOT happy lol. He quickly got on all 4s rocking and crying. We'll give that some more time.
All in all he has been doing real good and we are so happy to finally be home.
Nicholas had a pretty rough night last night. He was up just about every hour crying. Sometimes it was just to be held other times it was pretty hard crying in pain. It was a very long night. He only got morphine once so that was good but early this morning he got another and I think he had 2 doses today.
At noon they took his fluid tubes out which surprised Matt since it was still getting 4 to 6 ml out a shift. He seemed to act a bit better after that. At around 3 in the afternoon they took the IV out in his groin area. He was in much better spirits after that. He was his happy self again. Laughing, smiling, sticking his tong out and so on.
Around 5 this evening they decided to stop giving him morphine all together and just give him Tylenol or Tylenol 3. Right now he is not to happy. He just woke up and doesn't look like a happy camper. I gave him some Tylenol 3 to help out with whatever pain he is going through. I wish I knew what it was. I'm hoping its just his teeth coming through finally.
Saturday, April 11, 2009
This morning he got sick twice from the potassium meds they were giving to him orally. His morning nurse today talked to the doctors and they decided to just stop giving it to him all together. She also decided to take the IV out of his left hand since it was having a hard time flushing out anyway. He is so much happier now that he can move and bend that arm and get to his toys.
He still has the two fluid tubes in which only brought in .75 ~ 6 ml this morning at 6 am. They check his fluids at 6 am, 2 pm and 10 pm. There was talk about taking the tubes out yesterday but because he had a rise in fluids they decided to keep them in and hopefully take them out tomorrow. YAY... since I hate those darn things. They said they probably could take the one out but decided to wait and just take them both out at the same time. Fine with me, less pain on him.
So that's the update on Nick as of noon. He is sleeping quietly so I'm trying to keep it quit here not to wake him up. I Carly is on right now for back ground nose for him. A bit of home lol. Its showing the episode where YouTube "Fred" is on. I think Fred is such a crack up lol. My kids showed me his videos months ago lol.
Anyway, Nicholas is doing great. We arrived here around 9:30. Nicholas was wide awake watching Elmo's world on TV. He was probably wondering what the heck this red guy was as we don't watch those shows lol. He was a bit fussy but after I was able to feed him a little more then 2 oz he feel fast to sleep. I wasn't able to hold him. They said not until the pace maker wires were out.
Matt went to smoke and while he was gone the nurse that helped in Nicholas surgery came in and told me how he was doing and more about his surgery. She explained to me that the patch they put in wasn't as big as I thought and the hole was also not as big as I thought but then again his heart wasn't as big as I thought also so it was still a pretty good size hole for the size of his heart. She explained about the small hole that they sewed up and even the size of the hole they made and later patched up. She drew it all on a diaper which I told them I was saving since it had her drawings on it and made it easier for me to show others later lol.
Mary is her name. Mary told me that she was planning on taking his pace maker wires out around 1:00 when he was awake and if Dr F was ok with it she would also like to take his fluid tube/bubbles out also. Last night before I left his fluid levels were 21.5 ~ 21.5. Well when we went in this morning they were only 7 ~ 6 which has dropped BIG TIME. YAY!!!! They are so pleased with these numbers. At his last surgery that was what was holding us off in us going home before was the fact they still had not taken the fluid tube out.
Mary also said that she thinks Nicholas will be able to go to a regular (floor) room tonight and if TCU does not have a bed ready for Nick he will stay there. He can stay in PICU up until one night before he leaves and still be ok with going home. That's fine with me except I wont be able to stay with him while he is in PICU and we need to know if he will be having his own room today or tomorrow as we have to call the company helping out with hotel stay so they can give us an extra night at the hotel.
Anyway, Matt and I went to get lunch and then headed back to see Nicholas. He was up kicking or more like holding his feet up in the air. I brought out the baby doll I brought of Lilly's that he loves and OMG my little man was back. He wanted to give the baby a kiss and hold the baby and there was even a few times he smiled and started to talk. That's was one of the first times... other then him going back for surgery, that I felt I could cry at a drop of a dime. It did my heart good to see him doing so well. I told Matt that the way Nick has been acting, I can tell he is going to have a fast and wonderful recovery.
Thursday, April 9, 2009
When we arrived around 9:30, the doctor for PICU and nurses filled us in on everything. They talked about taking him off the breathing tube around 10:00. We noticed that they started to take the tape off of his face so we quickly left the room. We both didn't want to be there to watch them take the tube out.
My father in-law had called earlier to see how Nick was doing. Matt told him he would call him back once we saw him and got some news. Matt did call him back and has to call him with an update around 5 or 6 tonight. I called my mom to fill her in on how everything was going. I was even able to talk to Maddy and then at 11:00 we went to get some lunch.
We went back to see Nicholas who looked MUCH better then he did when we left. He had the breathing tube out of his mouth and even the one out of his nose. All he had was just a small oxygen tube in to give him a bit of oxygen. They also took him off the pace maker but left the wires in just in case they needed them later. Oh and they didn't even give him any blood... YAY!!! Not sure if I said anything about that in my last post.
He now has a beautiful pink color to him, or at least it looks better then it did before. He opens his eyes every now and then but I don't think he has seen me yet. I know he can hear me since every time I talk he starts to cry wanting me to hold him. That will probably come later this evening when he is able to drink some petialight (sp?) I think he has to be able to drink some formula before he can got to TCU or at least that's what Matt said he remembered happen last time. I can't remember but I do remember it was something that held us off till midnight.
Around 1:00 my friend Lola had called saying she was in the parking lot parked right next to our van. Matt talked her through how to get to us. We were sitting in a lobby on the first floor. The one we sat in yesterday was packed.
I took Lola in to see Nick and she took it pretty good. She loved on him the only way we could. Nicholas started to get fussy so we went out into the surgery waiting room for family. We visited some and then went to see Nicholas again. They had taken him off some more wires since he was kicking and pretty much kicking them off. There was even a time when Lola and I went back and they were changing his bandages which he was NOT happy about. Well they said he was fine with the bandages, it was something else he wasn't happy with so they decided to give him some more pain meds. That helped him quit down long enough to take a good nap.
We decided to go down for Dinner. I was hoping to be able to feed Nick after dinner since he was sleeping before but when I got back the nurse had already fed him a half hour before... Dang. Matt walked Lola to her Van and put some bags up we had full of snacks and stuff.
I told him I wanted to wait around till 8:30, 9:00 so I could feed him. We went and waited the time in the family waiting room until it was time since he was sleeping again. We went back around 8:30 and found that he was still sleeping. They didn't want to wake him up for a feeding so that meant I wasn't able to feed him... DANG!!!
The nurse explained to us that she tried to take Nick off of the oxygen fully but his oxygen numbers dropped down to low 90s. She wanted to keep it around 95% so she gave it back to him and it went back up. She said, its not much. Just a little more then what we would breath in but are hoping to ween him off of it soon.
She also showed me his fluid levels chart. He has two fluid tube bubbles in. Yesterday he started off on something like 29 ml (right) and 21.5 ml (center)... that was after his surgery. Then later last night it was something like 25 ml ~ 21.5 ml. This morning it was 23 ml ~ 22 ml and then tonight 21.5 ml ~ 21.5 ml. Slowly it is going down. They want it to be totally down to like 2 or 3 ml a shift before we go home. They are very happy with these numbers though.
I'm not sure if he is going to go into TCU tomorrow night or not. Matt thinks that it will be more like Saturday Night before he goes in. I guess only time will tell. Our hope is to go home Monday.
Everything else looks pretty good. They are planning on taking some more wires and such off before he ends up taking them off himself lol. They keep telling me he is such a strong little boy and full of energy lol. Yup, that he gets from his daddy lol.
Nicholas woke up around 3:00 this morning. He wasn't able to have any formula but was able to have some apple juice. Matt stayed up with him since he went to bed earlier then I did. I got back up around 4:30 and got ready. We left my friend Lola's house around 5:45 am.
Matt's parents arrived at the hospital around 6:15 thinking that's when we had to be there. Nope, we didn't have to be there until 7:00. By time we got there they had already had breakfast. We signed Nicholas in and then headed to the surgery waiting room where they weighed him and such. On their scale he was only 16 lbs 12 oz. Everything else checked out fine.
They took us to a small waiting room where they prepped him some more. Another couple came in with their little boy "Pork Chop" as his older brother (5) was telling us. His name was actually James lol. I don't know what he was in for. Something about his belly but he sure did fit his name lol. I thought he had enough for both Nick and himself lol.
Dr F came in and told us what he planned on doing. He said he went over Nicks heart cath pictures again and didn't think he would have to put the tube in... YAY!!! We talked to a few more people and at 9:00 I had to walk him back. I didn't have as hard of a time handing him over as I did the first time but it was still hard. The nurse was standing there waiting for me to hand him over but I just went brain dead and didn't hand him over. Finally it hit me that this was the moment and he needed to have this done. I think with all the time waiting for this day, it kind of made it easier for me then last time where it was so quick.
We didn't hear anything from Barb until about 11:00. She came out and told us that they had just started opening him up and would update us in about an hour on how he was doing. We went down for lunch and quickly came back up to wait on Barb who finally came around 12:30. This is when she told us that at noon they put him on the bi-pass and were now cutting into the heart. Once again she said she would be back in an hour to tell us how he was doing.
1:30 came and Barb came out with the news that they were done with the heart and were now sewing up the PA. Everything looked great and he was doing wonderfully. She said the next time we see her would be that the surgery was done and we could go see Nick. Now earlier in the day they told us that the surgery should be done around 2 or 3:00. I knew it wouldn't be done at 2 but was thinking more 3:00.
3:30 hit and still no Barb. I looked over at my mother in-law and said... I hope everything is ok, its past 3:00. This is when Barb came out and said that they were done with everything and were sewing up his chest. Dr F should be out to see us around 4:30 to tell us how everything went and by 5:00 we should be able to see Nicholas.
Dr F finally showed up around 5:00. Ok... so this is what they did...
He started off with cutting out the band. Then he went in to patch the small upper hole but ended up that all he had to do was just stitch it. This hole was a bit smaller then a penny. Then he cut a hole into the bottom part of his heart and patched the tunnel from his hole to his artery. Ends up that the hole was a heck of a lot bigger then expected. This whole time they told us it was a nickel size. Ends up that it was as round as a silver dollar and was more oval... 2 inches long by 1 1/4 inches wide. His heart is no bigger then Matt's fist. When I saw that I said... OMG its a LOT bigger then we expected. Dr F agreed! I see now why they were so impressed on how well he has been doing. From this point Dr F doesn't think he will need any more surgeries... YAY!!! but it all depends on how he heals and how scar tissue builds up.
We asked if we could go back and see him (by this time it was around 5:30). Dr F said he would like for us to wait a half hour before going back so the nurses and everyone could work with him. Matt's parents were wanting to get something to eat before leaving and had to leave soon so we asked if we had time to eat and he said that would be great, we could see him when we got back.
We went to 1st floor for dinner and then headed right back up. Matt and I went back first. OMG, he had so many more wires and tubes then he had before. He looked good though. He wasn't puffy or anything. His nurse said that it might happen later on yet but yes he did look good. She told us that they took him off the sleeping meds and would be waking up shortly. I asked her how much longer before he would wake up. We still had to check in the hotel and I wanted to be there when he woke up. I was so afraid that he would wake up with strangers and strange things all around him and get scared. She said it could be an hour or it could be later that night. We told her we had to run to the hotel and would be right back.
Matt's parents decided to stay while we went to the hotel just in case Nick did wake up. I was happy about that. Matt and I quickly went to the hotel, checked in and brought our stuff in. We made it back to the hospital within 45 minutes. When we got back my mother in-law was in the room with Nick. She just felt the need to be there with him. I went back and saw that Nick had been fussing and doing some crying hurt faces... awh... broke my heart. The nurse gave him some pain meds and he fell back to sleep. I stayed with him a little longer and then went with my mother in-law to say good bye to my in-laws. After they left Matt and I both went back in to see Nick. The nurse had put the picture up I made for Nick saying "thinking of you" with pictures of him and the kids. We have a mobile for him but are waiting until he is awake before putting it up and I also brought in his bag full of everything they might need.
We stayed with him for about 10 minutes but every time I would talk, Nick would hear me and start moving and crying. I felt so bad that... it was like I was causing his pain. I told the nurse that we were only going to do short visits but see him every hour or so. If anything was to go on we would be just right down the hall, to come and get us.
We went in for one last visit with Nicholas and then headed back to the hotel, where I'm at now. I just got off the phone with the doctor watching over him tonight and she was watching him to see how he was doing with his breathing tube. They are thinking of slowly lowering the level to slowly ween him off of it and hopefully withing 24 hours he will be able to have it taken out. I told her that I would see him tomorrow morning but I know we will be calling as soon as we get up to see how he did over night.
So that's how things are going for now. He was such a trooper. My strong little man!
I will try to update more tomorrow. Oh... I did get a couple pictures of him tonight that I will post later. I wanted to get a couple pictures a day to see how much he changes through out his stay. Dr F said he hopes to be able to let Nicholas go home either Monday or Tuesday. YAY!!!
Thanks for all the warm wishes and such. I saw all the replies but haven't had a chance to read them yet. I hope to do that tomorrow between visiting Nick.
Tuesday, April 7, 2009
Ok... here is the latest on Nicholas.
Went in this morning at 9:30 to CG hospital. They did blood work to check his white count, x-ray on his chest and a urin culture. He did great in getting the x-ray done. I was playing the "so big" game trying to make the fact they were holding his arms up high, as a game. It seemed to work.
He was a champ when it came to having his blood drawn. He only fussed as Matt puts it. If he had cried, the whole building would of heard it lol. I told Matt that when they go to put his IV in, I want to request this lady lol. She did a wonderful job.
As for the urin culture... that took awhile. We had to feed him and wait for him to pee in this little bag. How I found out he peed was when he went on me lol. It looked like I had peed my pants lol. Even the male nurse that did his x-ray (who had been talking to Matt the whole time about sports) teased me that he had some depends for me to use if I need some. I told him it was a bit to late lol.
We waited around an hour or two for the results and everything came back normal. YAY!!! Nick was healthy enough to have surgery.... FINALLY! We are to go in at 7:00 am tomorrow morning.
We left there and headed to my friends Lola and John's house to stay the night, who lives near St. Louis instead of going all the way home. On the way there we made all our phone calls to family and friends letting them know what was going on. My parents wont be able to come since they have my older 3 who are now out on Spring brake till April 14 (Maddy's 11th birthday). Matt's parents are now at a hotel in St. Louis and will meet us at the hospital in the morning. Lola is going to come sometime in the early evening to see how Nick and us are doing.
Well guess I better head to bed. Nick is finally sleeping... hopefully for the night. Matt is on the other part of the couch snoring away. I can tell that 4:30 is going to come way to early lol. Will update everyone when I get a Chance.
Friday, April 3, 2009
Dr K (doctor here) is waiting for a phone call from Nicks surgeon with what he wants to do. So now we are playing the waiting game once again. On a good note... he is up to 16 lbs 15 oz... yay... only ONE ounce away from 17 lbs. Sad thing is, we know and expect him to loose close to a pound during his hospital stay.
Ok... so the other news... ugh! We had Lilly checked out also. He checked her first and spent a lot of time listening to her chest and such. I didn't think much about it figuring he was listening to her lungs and all. But then I found it a bit funny that he was listening to her neck. All of a sudden he asked me if she had a heart mummer also.... WHAT??? I said no, why? He said, well... children her age in the 3 to 6 age range tend to have a mummer which is common but hers just doesn't sound like it should. He listen to her again very closely and then had her lay down so he could listen. I asked him what we should do about this. If we should have her looked at while Matt was home. He suggested that when we take Nick in for his post surgery check up to also have her looked at and see what the card. doctor says.
I have decided that I am NOT going to worry about this until its time to take him in. I have so much else going on it just wouldn't make since to worry myself sick over something that can't be done right now (I say this out loud, more for myself then you guys lol). I did tell Matt though, that if something did come up wrong with Lilly that we WILL be looking into his bio. father's family history. He doesn't know anything about his bio. father or his bio. family on that side. Not only do we need to look into that side of the family for Nick and Lilly but also for Matt who just came down with high blood pressure and now has to take meds... at just a young 26 yrs old.
Thursday, April 2, 2009
Yesterday, I thought I would take Nicholas 9 month pictures a bit early since I have no idea when he will be going in for surgery.
I set up the dinning room table with a sheet for the background and a sheet on the table. I tend to like the lighter colors better then the dark as it takes away from the subject and makes the picture look a bit depressing, if you ask me lol.
I wanted to do a safari theme since I had this adorable safari digital scrapbook theme. I put on his lion outfit which to my surprise was a bit to small. Its 12 months but must run small.
Anyway, after getting him dressed and ready to go, Matt sat him on the table. Thinking he might fall over like he always does, Matt kept his hands close by. Nope, he did wonderfully, sitting there like a big boy, trying to grab all the stuffed animals that were around him and swinging them up in the air.
After pictures were done, which was so much fun to do. I wanted to work on his 9 month pages. I sat him on the floor with a big Trick or Treat pumpkin full of toys. He sat there pulling out all the toys he could and banging them against the pumpkin and didn't fall once.
YAY!!! One mile stone down (sitting unassisted) now just have crawling, walking, potty training and I'm sure the list goes on and on and on lol.