Thursday, November 22, 2012

Happy Thanksgiving!! (update)

My little man finally stopped fighting and gave in to sleep. Wow, what a long day! We got to Minneapolis around 12:00, parked under the hospital and went up to the lobby. Ryan was on the phone so I took Landon and found the family resource center. I went up to the counter and a lady asked if she could help me with anything. I told her no, that I was just looking around. While I read the newsletter on the counter the women behind the desk doted over Landon and tried to get him to smile at them. Ah I found it... down on the newsletter read, something along the lines of, Black Friday Door Buster. Come down to the family resource center from 11-1 and get a free pillow pet from the Maxwell family. I smiled SO big when I read that. I was so overjoyed that I had to share with the ladies behind the desk that we traveled down today with 120 pillow pets stuffed in our vehicle. They told me they were just talking about us and that the kids are so excited for Friday. I told them that we are SO excited as well :)

As one of the ladies was telling me how they are planning on setting up the room for us I felt another presence with us. I looked down to the side to find a child in a wheel chair staring up at Landon. I don't know how to explain this child, except that there is no denying he has been through A LOT. I smiled at him. I like your baby, he said with a smile. Oh well thank you I replied :). What is his name? It's Landon I told him. I like babies he said me with enthusiasm. I like their cheeks. Sometimes their cheeks are chubby. "haha yes, he definitely has chubby cheeks. The lady I had been talking to introduced me to the boy. She told me that he is very excited to receive a pillow pet on Friday. I looked back at him. He was smiling from ear to ear and nodding his head up and down. That moment made my day. I am beyond excited for Friday now. I can't wait to see that little boy again and give him something special.

We walked across the street and enjoyed a quick lunch with Ryan's brother, Joel and his girlfriend. Then we walked back to the hospital and went up to the 12th floor for Landon's evaluation. It was very similar to his appointments in Bismarck. He laid on my chest and slept during the whole echo which left Ryan and I with nothing to do except watch the Baby Einstein video they had put on to calm Landon down. I find Baby Einstein to be the perfect mix between creepy and mesmerizing.

Then Landon had some other tests before we met with the cardiologist, well it was supposed to be his cardiologist, but he was not able to make it so the man who will be doing Landon's cath on Monday (Dr. Bass) came in to talk with us and explain what will happen on Monday.

Pass laptop to Ryan so he can explain the technical stuff...

Dr. Bass explained to us that, they need to look in Landon's heart to see how it's pumping and they want to test it to see if he can handle the blood flow of a normal heart.  They are going to put two tubes into his artery and use a balloon to close off the shunt they put in his heart in April.  Depending on how that goes they might use the other tube to close off a hole Landon has going from the right atrium to the left atrium.  The doctor told us that this hole was semi normal and that all babies have it and about 1 in 10 adults have this hole that never closes, but due to Landon's heart condition it might be necessary to close this hole permanently.   If everything goes well in the Cath Lab on Monday then they will permanently close the shunt and Landon should have a normal two chamber heart.

Ok, I'm back, thanks babe. Dr. Bass told us that he's very optimistic right now. He said he has seen babies with smaller ventricles then Landons, do very well. If everything goes well and they are able to close the shunt, Landon will be taken to the PACU (Post-Anesthesia Care Unit) after the procedure, then once he wakes up they will move him to the recovery floor where he will stay overnight. I am so relieved that we will be able to stay with him. If all goes well, we will be discharged the next day :)
If there are complications during the cath and he doesn't tolerate them closing the shunt, then they will allow us to go home as soon as he wakes up and is stable. They will immediately talk with us and schedule a surgery date, but because Landon has been doing so well, they will not keep him here until they have an opening for him in the OR. So it sounds like either way, we will get to go home on Tues.

Prayer requests

protection for Landon and wisdom and guidance for the doctors as Landon is in the Cath Lab. Risks for this procedure are minimal, but as we found out last time, things CAN go wrong. He didn't mention anything about the chance of burning a hole this time, but he did say what they worry about most is the formation of blood clots.

Also they seem to think that Landon will wake up a couple hours after the Cath, and I hope that's the case, but if he's still anything like he was in April, it may be much longer. I believe they put on his file that he is VERY sensitive to anesthesia, but we will mention it again to the anesthesia team when we meet them on Mon.

PLEASE PRAY that Landon tolerates it well when they close the shunt and that his little heart will realize this change, adjust appropriately, and that his body will continue to get the blood circulation that it needs. PRAY that they can successfully close the shunt for good.
I really don't know much about the other hole between the left and right atrium. Honestly Fernandez has NEVER mentioned it. Dr. Bass told us that it really isn't 100% necessary to close it, but they want to know if his body will tolerate it if it does close.

We are dreading Monday, but we have so much that we are enjoying and looking forward to.

TOMORROW is getting closer and closer. If you think of us from 11-1 please pray for the children and families that we are meeting. We're praying and expecting big things!!

Saturday we are going to travel a ways to a location my aunt guarantees will make the perfect backdrop for our Christmas pictures. Then my mom and aunt are going to bring Landon back to my aunts house while we enjoy a date night. I am so excited! We haven't been on a date since our 1 year anniversary in June!

It is now morning so I will update on how Landon did last night.

Landon was WAY overstimulated last night. Here is my child who rarely ever leaves our apartment, walking (he's not walking obviously ;) all over a huge hospital, seeing hundreds of new faces. Then we got to my aunts house which had bright Christmas lights everywhere, with a lit up tree in almost every room. He was SO wide eyed! Then add in my aunt, uncle, cousins, and grandparents who hadn't seen him since he was born and well, you can imagine the craziness.

We had such a great time last night, but Ryan and I began to tell that Landon was on sensory overload. We took him down into the basement to get him to calm down and after what seemed like forever of nonstop screaming and fidgeting we finally got him to sleep. I had to just hold him tight in my arms as he fought me :( finally he gave up and drifted off. He woke up in the middle of the night SCREAMING in horror. NOTHING helped. Finally I took off his helmet (he was getting overheated), and sang to him for 30 more min until he fell back asleep.

Everything is new and overwhelming to him. Hopefully after today, he will be used to it. I guess this is just the price you pay from keeping your child in a bubble :(

He was having so much fun last night though. He made a new friend...

I was just sitting on the step that goes into the kitchen, talking with my mom and aunt, when I noticed the kitty was staring at Landon. I put Landon on the floor and was holding up his tummy so he could crawl and he made his way (effortlessly!) over to the cat.

I have NEVER seen a baby so gentle with an animal before!! He was actually stroking the kitty. I was blown away and thank goodness I thought to snap a couple pictures.

And I have NEVER seen that cat take to ANYONE like she did Landon. It was so precious! Who knows, maybe she knows that Landon is what was in my tummy when I lived here for the last month of my pregnancy.

Hoping this blog finds each of you surrounded by family and yummy smelling food. We are blessed beyond measure!

Praise God from whom all blessings flow. HAPPY THANKSGIVING everyone!!!


The K. Family said...

Oh, your post makes me wish I was there!! I'm glad the dr. appointment went good and will definately pray tomorrow for your project. Say hi to everyone and I hope you all have a great Thanksgiving!

Anonymous said...

Both of our children received Pillow Pets today and just wanted to say a huge THANK YOU for doing this. We have continued to be so blessed by the generosity of others and by being able to rest in the goodness of God. Our daughter, who is here often was completely overjoyed by your gift today, and our son, who hardly ever gets to be here with his sister because we live so far away, was so excited to be able to share in this as well. They have been cuddling their new friends all afternoon :) Again we are just so thankful for your kindness and generosity. We will add your beautiful son, Landon to our prayers and for God to continue to be praised through circumstances. Thank you again...genuinely

Luke, Ali, Jackson and Lanie