Peace Out Houston

We're going home!

Waiting Game

We have been bouncing around hotels and finding places to stay. We have been fortunate to stay at one's friends house for two nights. To us, Stockton is doing very well. He has played with his fellow heart friend, Grayson, a couple days. It's nice to see a smile on his eyes again. We are waiting around for an appointment this Friday at 9am to see if we can go home. We miss our kids like crazy and we are really home sick. Stockton's Ned schedule is complicated but we are doing it right. He wants to drink all the time but he can't. We will be on fluid restriction for a couple of months. We hope we can update you all on Friday and we can get clearance to go home. The hotels are getting old but we are so grateful that Stockton is doing well. 

To good to be true?

We were discharged this afternoon. I am still trying to wrap my head around it. Everything happened so fast. His EKG had to be repeated due to some rhythm issues but they were ok the second time around, not perfect. I feel like I could throw up. Stockton always gets better when we leave the hospital. His personality comes back and he thrives. We were sent home on Lasix, enalapril and aspirin. I can't believe it! I want to pinch myself. At the same time I'm really worried that this is too good to be true. I am going to watch him very closely. He already fell and scrapped his knee. (Ahh!) we have to be so careful with his fragile body. We have to stay in Houston for 7 to make sure that all goes well. My sister said our new hashtag should be #homelessinhouston Hotels are expensive and we didn't get into the Ronald McDonald house. We are in a hotel for the next 7 nights and then we will have a follow up appointment with surgery and our cardiologist. We are grateful that we are out but hope that he continues to improve. We couldn't have made it this far without you all!

I "mustache" you a question

Sorry I had to do that for the following picture.

9:30am: The plan today is to pull his chest tubes, an X-ray,get an EKG and an ECHO. We will know the results today and we will inform everyone.

11:30am: After Ativan and morphine his last 2 chest tubes are out. That was a tough one to watch. I can't handle all the screaming, tears and pain. I am so glad that Seth is here with me. Stockton had his heart buddy, Greyson, come play today. We also got a Minion package from Aunt Courtney. We will be working on all that other stuff after lunch. Wish us luck.

8:15pm: We received a package from cousin, Amy! Thank you. Stockton had his EKG and ECHO! I'm literally praying, crossing my fingers and making sure no black cats walk in front of us. We have a chest x-Ray and labs in the morning. Stockton was able to play a lot more today but the Ativan kicked his bottom. He was so groggy today. He finally had a stool!!! 3 of them! Happy Day!! We are grateful for the support and especially all the prayers. Pray we can get the heck out of Dodge when the time is right! Love you all. 

"Mom, I'm feeling better"

2:30pm: Take a quick glance at the post title and see how our day is going! Stockton's chest tubes continue to drain but not much. He walked to the play room today and actually wanted to go in! We played with trains and Mr. Potato head. We stripped his chest tubes this afternoon. He has only had to do that once a day for the past 3 days. His pain is under control with Hycet and ibuprofen now. We don't need the Toradol. He still hasn't had a bowel movement so we are going to have to do a suppository this afternoon. I wish we didn't have to. He takes Miralax, Senna and another stool softener to help and he just isn't budging. I was hoping we would be past that by now. He is talking so much more today. He has the light coming back. We are still unsure when we are going home but we miss it. The plan for the day is to switch from iv lasix to oral lasix, get him a sponge bath, get his electrolytes balanced and eat! He is on track with fluids today. Yay! We will update later today.

9:40pm: He hates taking meds. He takes Lasix, enalapril, Hycet and Ibuprofen (as needed), senna, and aspirin. He has been doing great with fluids and eating better. He still hasn't gone #2, even after a suppository. Grrrr! He is not in abdominal pain and his stomach is soft. Nothing serious, yet. He walked around twice and is doing well. We are grateful. I don't want to jinx us so I will just say that I hope we leave the hospital when we are fully ready. I worry they may release us then we will just have to come back. My heart would break!

Post Fontan: Day 5

2:50pm: Stockton continues to be a trooper. We have been keeping him busy with TV shows and toys. He is still not himself. When anyone comes in he says, "I hate this place, no pokes!" It's hard to hear. His chest tubes continue to drain. He still needs to eat and drink more. We hope to hit his goal today. He still hasn't gone #2 and I worry about that. He has dark circles under his eyes and was a little low on some labs today. Hopefully his spirits come up today because we brought him a carpet and he can play with his train tracks. He hasn't talked much but since we brought the trains up he is more happy. He currently gets Toradol every 6 hours to help with his pain, it got bad there for awhile. 

Thank you to everyone that has sent us a postcard through Texas Children's. We love all the messages. Keep them coming! Use this link to send him one:

http://www.texaschildrens.org/Support-a-Patient/Greeting-Cards/

9:18pm: The carpet and trains have done wonders for our little man's spirit. He has started talking to us more and giggling a little while watching movies. Thomas the Train has been great for him. (Little does he know that I found a pack of 6 on sale for $32! He can open one each day this week. He did really well today when we had to strip his tubes. I went to Target tonight to get him some fresh fruit and food that I know he will eat. The food here is next to awful, honestly. I wouldn't want to eat it either. Hopefully he will do better eating tomorrow. He made big progress today.

Also, my husband and I celebrated 9 years of marriage today. I am so grateful for him and this journey that we can share. It's hard to believe that I met my soulmate in 2003 at just 19 years old. Crazy! He is a wonderful father to our children and he is so patient with Stockton. Stockton only want him when they are poking him or giving mess. Seth is such a comfort to him and myself. Love you sweetheart. 

Post Fontan: Day 4

6:35am: I hate chest tubes. Stockton has been in a lot of pain when they strip his tubes. I just broke down last night because it's so hard to watch. I just researched and questioned other mothers about pain management. We tried a small dose of Morphine about 30 minutes before and he did much better. We are going to see what Dr. McKenzie thinks this morning because our nurse agreed that when his tubes were stripped at midnight, he didn't do well. Being a heart Mom is rough. You constantly have to be your child's advocate because you know them best, but yet doctors and nurses are trying their best as well. I just had to put my foot down last night because I didn't feel right about it. I hate watching him hurt and I know any parent can relate to that awful feeling. They also can't get blood out of his lines anymore which means he has to be poked every morning at 4am. We are going to be working on a pain schedule today and making sure we are giving meds at more convenient times. At night they strip his tubes at 12am and 4am but he gets a dose of Tylenol at 12am and 6pm. Morphine is every 4 hours but the dose is a little high. I want him to have it but he also needs to have a bowel movement so it's a little counter productive. We are going to get him walking again today.  I think he did a good job yesterday. We will wait to see what Dr. McKenzie says this morning.

11:30am

We are on 15! Yay! He has a new room and we have sunlight and a view. (It's the little things remember!) Stockton was taken off his oxygen but then put back on 1 Liter because he was only at 89-90 for O2. He is no longer on EKG leads. So right now he is on oxygen, has a pulse ox, an iv still in his right hand and his 2 chest tubes. We hope this new room boosts his spirits.

9:00pm: Stockton is doing much better with pain. We know what times are best to give it to him. He started lasix today which will make him get rid of any extra fluid he is carrying. The chest tubes are still annoying. He has no oxygen currently and his sats are around 91%. This may increase slightly after his body gets use to the new circulation. (I would definitely like it to.) Seth and I are so glad that we get to stay with him in his room. You can't sleep in the CVICU but you can in the step down unit. We need a couple things to happen in the next day or so. We need Stockton to have a bowel movement, we need him to walk more and we need him to eat and drink more. All of these things come gradually but I can't have him lose weight or be constipated. These are all set backs that could keep him here longer. Around 6pm this afternoon his iv wouldn't flush. We called the vascular access team and they used an ultrasound machine to find a good vein. I love this team because they get a good look and they hardly miss. The first time they got it, we were thrilled. They also gave Stockton lidocaine under his first layer of skin so the iv wouldn't hurt as much. We hope this iv flushes for as long as possible. Seth and I are getting settled in this new room. It brings back a lot of memories. Please continue to pray that Stockton heads in the right direction.