Sunday, May 31, 2009

We're still in Denver....

I'm not sure how many of you know about Landon, so I decided to write on here to give everyone an update.

We made our way to Denver on Monday and stayed overnight in a small town a little more than half way to Denver, so that we could take Landon to the Denver aquarium on Tuesday. We ended up taking Landon to see the fish, but he wasn't all that interested in the fish...only the exit signs and the numbers on the tanks...I don't know...he's a funny kid.

On Wednesday we took Landon in for his procedure and waited in the waiting room like we always do, preparing ourselves for the mad Landon we always get back. As we were waiting we heard someone call over the intercom system a "code blue" for someone in radiology. Braydon and I got really scared, but reassured ourselves that he was fine. About 10 minutes later, as Braydon decided he needed to use the bathroom, a nurse came into the waiting room and called for us. I stood up and made my way over to her and she said that she needed to speak with us and immediately my heart dropped. As we were waiting for Braydon, I asked her if everything was alright, and she just kept saying that she needed to speak to both of us. When Braydon got back from the bathroom, she walked us into the hallway and told us that at the end of Landon's procedure his heartrate had dropped to lower than 60 beats per minute, and they had to start CPR on him. She took us close to where Landon's procedure room was and we waited as nurses and doctors (even the AirLife people that take people to hospitals in the helicopter) came in and out of his room. Occasionally someone would come out and tell us that he had a good heartbeat and blood pressure. What felt like 30 minutes later, the doctors came out and told us that at the end of the procedure when they were just about to move Landon onto a bed to take him to recovery, he ended up having a bronciospasm basically where the broncials close off. They think that at that time Landon had air in his lungs and went to cough and therefore punctured both of his lungs, and his lungs collapsed. That's what made his heartbeat drop and why they needed to perform CPR. It was something that happens occasionally, but they hadn't seen it to this degree.

Landon has been in the PICU since Wednesday, but is doing really well. They had to put chest tubes into his chest to get all the air out so his lungs would be alright. They just removed those yesterday, and they haven't seen any air in his chest cavity since then....which is good. :) He is off all of the medications they were giving him. He didn't get much sleep last night and we were worried cause he kept stiffening up like he was in pain. When we talked to the doctor today, she said that he might be having withdrawals from some of the medications he was on. So we're going to have a couple more days of trying to get him off the pain medications. Fun! :)

All in all, it was a tramatic experience, but it also taught me and Braydon a lot. We're going to slow down with the procedures and not come back until early fall. The anestesiologist said that it might have been caused due to the fact that he only had 6 weeks to recover and he might have needed longer than that. So we are going to take her advice, plus for the fact that we don't want to put ourselves through that again so soon. He will need these procedures, so we have to figure out a way to get them for him. The anestesiologist also said that now we will take extra procaution when we do it again.

We have also learned to not take anyone for granted. Braydon and I both thought we were going to lose Landon on Wednesday. We're glad we didn't and we won't take anyday we get with him for granted. Hopefully, this can also help others reading this to learn the same lesson. We are so happy that Landon came out of this and we will be even more excited when we get to take him home and spend more time with him.

I want to thank everyone that already knew about this for all of your concern and support through all of this. It was very reassuring to know that you all cared. Thank you so much. We love you all and I'll keep everyone updated. XOXO

Sunday, May 24, 2009

We're off to Denver...again...

Hi everyone!!

Another update as to what is going on in the Walsh household. We will be leaving tomorrow to go to Denver for Landon's next procedure. His procedure is on Wednesday morning, so keep us in your thoughts that day. We're leaving early to give us more time for travel and we are also going to try and take Landon to the aquarium while we are there. That should be fun. One day we will have to go on vacation to Denver so we don't have so many negative connotations associated with it. :)

We have had many doctors appointments over the past few weeks and I apologize for not getting on here with an update. We went to go see Landon's eye doctor to see how his vision was coming along in his left eye. He said that Landon still favored his right eye, so he suggested that we start patching his right eye so the left one could work a little harder. Fun! But the place where we get Landon's glasses had these cute little covers to go over one of the lenses so we didn't have to tape a patch to his face. I got a cute one that had a picture of a pirate. :) I wasn't looking forward to putting tape on his face for the obvious reason that he would just rip it off, and that Landon's skin is already so sensitive I didn't want it to break out from the tape. We tried putting his glasses on with the cover and he doesn't like it, but we are trying to make a deal with him that he has to wear his glasses while he watchs tv...hopefully the tv will keep him occupied enough that he'll forget about his glasses. Since he only has to wear the patch 2 hours everyday, we're hoping that a movie a day will help ease him into it.

We also went to go see Landon's ENT doctor. He's the one following Landon's progress with the trach. We went to go for a follow-up from Landon's last procedure, and he told us that he was hoping to see more progression from these procedures. He wants to put Landon under after he's healed from the next procedure (maybe in July) and do another bronchoscopy to check out how Landon's airway, throat and tongue look. I'm crossing my fingers that he finds good news cause he said that if there wasn't much change then we didn't need to go to Denver anymore. Which scares me. We'll have to move on to the next and final type of treatment before the last option of cutting into his tongue. Keep your fingers crossed that all of this is helping and hasn't been a waste of time. That would be so aggrivating!!!

Anyways, on a happier note, Landon is growing like a weed and has become a bit of a Chatty Cathy. He's not saying anything in particular, just a lot of sounds, but we have been working hard to get him to say words. He's getting there. Landon's teacher brought out the lady to help us with Landon's communication. She carried a rolly backpack full of things to try with him. He wasn't quite understanding and using the picture exchange that we tried with him, but he caught on to using the pictures when they were placed on a button that said the word. He would push the button for the object he wanted and then we would give it to him. We're just going to condition him to use the buttons when he wants something. Eventually, he'll be able to make sentences with them.

Well, I'll keep everyone updated about Landon when we get back. Please keep us in your thoughts...especially Landon.

As promised, I included some pictures from Landon's first experience in the bean box. He had a lot of fun dumping the beans on himself...

Wednesday, May 6, 2009

More updates!

I realized that it's been a while since I have sent an update on how Landon is doing, so I decided to spend some time getting everyone caught up. :)

We've been very busy in the month of April getting Landon back up to speed from when he got his surgery. He took about a month to get back to eating normally. This procedure was pretty hard on me and Braydon. Landon was having a hard time with swallowing, so he would drool a lot and then he would get it all over him. He hated it just as much as we did. But we are so happy that he is back to his normal self.

After that my dad came to visit for my birthday and he got to see Landon for the first time since last July. So there were lots of changes that he got to experience first hand. While my dad was here, Braydon and I signed papers to move into a house!! We're super excited to have more room and a place to call our own. We are actually building a house, so we won't be moving until September/October. The neighborhood is not very far from base, so we will still be in the same area of town. I'll keep you all posted as it's being built.

The weather is finally starting to warm up and we've been spending a lot of time with the windows open or going outside. Landon loves walking around the neighborhood and swinging on the swings. We took him outside with the sidewalk chalk yesterday and he really enjoyed coloring the sidewalk (and himself) with the chalk. :) If the weather is nice tomorrow, we are going to make a "bean box" for him to play in instead of a sandbox. He can't have sand because it's very dangerous for people with gets everywhere. He also can't breathe beans into his trach like he could with rice or something like that. I'll have to take some pictures of that because I'm sure he will enjoy himself. :)

Yesterday we had a visit with Landon's Gastroenterologist, Dr. Zapata. He is the doctor that keeps track of Landon's weight and eating habits. We talked about my concerns for Landon wanting to eat more foods orally, but thought that maybe the Pediasure was making him too full to where he didn't experience being hungry. Dr. Zapata told me that we could try moving his feedings, so we are combining Landon's last two feedings of Pediasure and having the pump run slowly over a couple of hours when he's sleeping. That way we only have two feedings a day and can possibly spread them out so that we can get Landon eating more orally. We haven't quite figured out a good schedule for that yet, but we're getting there. Dr. Zapata reassured me that he shouldn't lose any weight because he's still getting the calorie intake from the Pediasure, we are just wanting to get him more interested in the tastes of foods.

Landon's teacher, Lois, is also going to bring a woman to our house to work on Landon's communication. She says that she has worked with kids with trachs before (or kids that can't communicate that well) and need other forms of communication to express themselves. She wants to start using a picture system where Landon will have pictures of familiar objects and will bring you the picture of what he wants. We're hoping this will help with the whining too. :) She will be out here next week and hopefully she will bring some other good ideas too.

We will be going to Denver at the end of this month to do another session of injections on Landon. Hopefully Dr. Yakes will be kind to us and concentrate on another area so we won't have to deal with the drool monster again. :) Who knows?