2013 summer pictures

These are just a few pictures from this summer...

 

Eugster's petting farm with Taylor

 

 Harley Davidson Museum

6 months old at Krape Park. He got to swing and rode on the merry-go-round.

7 months old at Davis' pond. The dog is from my Aunt Sharon. It's Landon's fire dog!

 Our little redneck!

Landon's Summer of 2013

7 months old!

I have been a bit neglectful of the blog over the last few months, so I thought I better get caught up. We have had a lot of changes and have had a lot of fun! So, I'll start with Landon's medical changes. Landon has continued to improve throughout the months. He now is around 16-1/2 pounds and 27-1/2 inches. He has been removed from all prescription medications! He had an appointment with his cardiologist at the end of May and we began the weaning process of his heart medications. By early June, Landon was finished with his heart medications. In mid-June, we visited the Pediatric GI doctor and he took Landon off the Zantac. So, now all he takes is 1/2 of a low dose aspirin a day and that is to keep his blood so he doesn't get any clots that could possibly get caught on one of the patches on his heart. We are so happy with how Landon has recovered and we are so thankful for all of the prayers that we have received! Also, we had an unexpected event on Friday night. We were at a funeral dinner and Aunt Kelly was holding Landon while he was sleeping. She noticed something on the floor and pointed at it with her foot. It was his G-tube button! I freaked out, just a bit, which isn't like me. A lot of thoughts went through my head, "We are supposed to put it back in and it's been on the floor! How am I going to clean it?" "I don't have anything here to reinflate the balloon!" So, Nick sent me to get a bandaid and by the time I got back they realized that the balloon had be deflated for a while because the stomach wall had already healed. He wasn't leaking any food out of the hole, and he had just eaten. So, I guess he's done with his G-tube button now also. We were planning on removing it in the middle of August, so I guess we are a little ahead of the game. And, Landon saved us some money by avoiding a trip to Madison and also saved the insurance company some money!

Landon has also met some major milestones over the last few months. Early in May he found his feet and also figured out how to turn the pages of books. He has been very happy with his feet and loves to suck on them. He even managed to comb his hair out of his eyes with one of them. He learned to love his tummy time and learned to roll over in mid May. Until recently, he rolled everywhere. He has become very vocal and likes to make all kinds of noises. By early July, Landon was able to sit up on his own. He is still a bit shaky with it, but he can handle it pretty well. Last Tuesday, he made his first moves on the floor that was not a roll! He now army crawls to things on the floor! He is still working on the coordination for full blown crawling. And on Saturday, I felt his first tooth! I can't believe all the changes Landon has made in the 56 days of summer so far! It's crazy! He is still the happiest little boy and smiles at almost anyone who will talk to him!

I have been trying to make sure we have the best summer possible. I realize that Landon won't remember it, but someday he will be able to look back at the pictures and realize that I tried to make our time together special. Some days it's as simple as going to the park to swing or helping me make his food. Other days we have gone to the zoo, the fair, and even the Harley Davidson Museum. I have had such a great time with him, it will be very hard to go back to school at the end of the month.

One major event we had was on June 9th. We were asked to be part of an event at the American Family Children's Hospital. The Mike McCarthy family is a huge donor to the hospital and have a two-day fundraising event. This year as part of those two days, they McCarthy's were invited to tour the new floors of the hospital. We were also invited to be at that event. They asked us to be there because the services that those floors will offer were services that Landon would have received when he was there. I was under the impression that it would be several former patients...it was not. The CEO of the hospital spoke, then I spoke, then Mike McCarthy spoke! When I say speak, some media was there to cover the event and we were on the news later that night. It was a truly amazing opportunity for us! Being Packers fans, we were just honored to meet the McCarthys. They are wonderful people who care so much about helping children at the hospital. They have no personal connection to the hospital. Mike visited several years ago and decided that his family needed to make the AFCH his family's legacy. We were very honored to be part of the event!

 

Meeting the McCarthys

 

We had to wear hard hats. The AFCH marketing specialist took a similar picture and it will be used by Findorff for their marketing.

The CEO speaking.

 

After the event we stopped on the PICU floor and our surgeon and cardiologist happened to be there. They were quite excited to see Landon. Our cardiologist had seen him 2 weeks prior, but our surgeon hadn't seen him in about 2 months. He was so happy to see Landon looking so healthy.



We're home!!

Nick and Landon and I returned home yesterday! So far he has been doing well and acting like his old self. He isn't eating quite like he should, but that is expected after surgery. What he doesn't eat, we give him through his tube so he can begin to catch up on growing. It feels great to be home and getting Landon back on his regular schedule.

Landon had his first thunderstorm this morning and he didn't even notice it. It's looking like he may have his second very soon today!

I didn't get a chance to upload his Easter pictures before his surgery, so those are included today. Also, we stopped at Aunt Megan's yesterday for Nick to fix her car and she snapped a couple pictures.

At Aunt Megan's

Happy Easter!

One more day

We had been told for a while that we would be coming home today (Sunday), but after some fluid statistics the doctors decided to keep Landon for one more day. His fluids are positive over the last day and they shouldn't be. So, they are trying to decide how much Lasix to send him home on. In order to have the proper dosage for him, they need to observe him for one more day. We are not disappointed with this. We would rather they be confident in sending him home than have them wondering if they are doing the right thing.

Yesterday was a good day for him. He had his last line removed. He spent a lot of the day smiling. He also laughed for the first time!! I missed it with being at a track meet, but he laughed a bit when I got back. It is the sweetest little sound and I can't wait to hear it when his vocal chord is better!

We just can't believe that he is going home within a week of his surgery! He is an incredible little boy and we thank God for him every day!

My team made a HUGE card for Landon! They are great kids!

Post-Op, Day 3 and moving

Landon is still doing very well. Today he had his last chest tube removed and he was taken off his oxygen. His nurse also removed his kidney sensor. (His brain sensor was removed yesterday.) The only thing left to be removed, other than his leads for vital signs, is an IV. That should be removed tomorrow.

He had a swallow study done today to check if he will aspirate while eating because of his vocal chord. They found that he did aspirate on his third swallow with a fast flow nipple. So, they switched to a slow flow nipple and he did fine with that. Unfortunately, because they use barium for that, his stomach has been bothering him most of the day since then. His stomach isn't really moving anything out of it, so he hasn't been very hungry. He gets quite uncomfortable and whines a lot because of it. Hopefully that will move through him soon so he can eat orally and be more comfortable.

He has been receiving respiratory therapy today to help get some of the "gunk" out of his system. He got somewhat of a bath today and cried a lot during that and that is almost the best therapy he can get. His cry is a lot quieter than pre-op, but that was to be expected. Hopefully that will return soon.

We got half a smile out of him today when I finished changing his diaper. But it was like he realized he was mad at us and stopped. He has spent most of the day watching cartoons on the laptop. They have kept him calm and helped him forget that he is uncomfortable. We had him out of bed a lot today to help gets things moving through his body. He loved being held and got upset when we put him back in bed.

On a low note, we found out tonight that we have to move to a different room. They have been doing a lot of shifting of kids tonight and we are one of them to be shifted. It's a pain in the rear! This happened to us the last time we were here. We were told we would be moved to a shared room and that we would have the larger side of the room. Then...we found out that we are really being put on the smaller side. The boy we are sharing with is the same boy we shared with before we were discharged in January. Now, this is horrible. This little boy is now 4 months old and rarely has his family with him. We are not allowed to give him attention, for obvious reasons, but I find it very difficult to be in a room with him and not pay attention to him. Hopefully since it's the weekend some of his family will come in. It'll be a little easier for me because I will be gone all day, and most of the night, tomorrow for a track meet.

We are very proud of Landon and how hard he is working. He is an amazing boy! If you haven't met him yet, you will see someday what I am talking about. He has really changed our lives. I never knew what people meant before when they said, "Kids change everything." I know now. All of the stupid things that bothered me before, just don't matter. I don't get caught up in minor things that really shouldn't affect me much. I just ask one thing of all of you who have children or grandchildren...hold them tight and make sure they know how much you love them. Remember how lucky you are to have them in your life. They are an amazing blessing from God.

Watching cartoons on the laptop

Snoozing with Dad

Post-Op Day 2

Landon has had a great today! He had a lot of things removed, so he seems a bit more comfortable. He also has been awake and looking at us a lot today. This morning he had two of his chest tubes removed, the pacemaker wires were removed, his catheter was removed and one of his IV lines was removed. So he is left with one chest tube, one IV line, and the oxygen in his nose. His oxygen was changed to a lower rate and we were hoping to get rid of that today also, but the docs didn't okay it. I'm sure tomorrow it will be removed. His blood pressures had been pretty high today, so they started him on captopril to help with that, and his pressures have dropped nicely.

We are told by the doctors that he is ahead of schedule for his recovery. He began eating today, through his G-tube. He has tolerated that very well! He was very hungry all morning, so we were very happy to let him "eat." I was able to hold him today, on a pillow, and so was my mom. It was pretty painful for him to be moved. His cry is very hoarse and pretty quiet. He is having a swallow study done tomorrow so we can find out if he can try to eat orally. He still receives Tylenol for pain and morphine as needed. His mouth gets really dry, so we wet it with a small sponge and some sterile water.

We were told by our main surgeon today that he may be able to go home this weekend. So, both surgeons have said that. We are a little nervous about that and don't want to rush things.

Grammy and Papa Bausman and our friends Holly and Tyler visited today. Holly took some pictures while she was here.

Day 1 Post-Op

I will warn you that the pictures in this post may bother you. They show all of his lines and tubes. So, if you don't want to see him like that, don't scroll all the way to the bottom.

So far Landon has had a pretty good day. We learned the first time around that we shouldn't rush things, so we are staying calm and taking things one step at a time. Late this morning Landon was extubated. In order to do this, the slowly took him off the medicine that kept him asleep. He has done great since he was extubated! He is still receiving oxygen, but he is breathing on his own. He was on fentanyl for his pain, but they have suspended that and are giving him tylenol every six hours for pain and morphine as needed. He is on a variety of other drugs, Lasix to remove any extra fluid, a steroid to help with swelling, he receives breathing treatments to help with swelling from his breathing tube. (I'm sure there are more and I just can't remember them all!) He has many tubes and wires attached. He has three chest tubes, two pacemaker wires that go to his heart, a catheter, three IVs, a patch on his back to monitor his kidneys, a patch on his forehead to monitor his brain, a pulse/ox button on his toe, and of course the leads that monitor his vital signs. Last night a team from EEG came and put 23 electrodes on his head to monitor his brain activity to make sure that he didn't have a stroke or seizure. Once they extubated him, they removed those electrodes also.

We are told his is doing very well. His heart is functioning great and his breathing is much better. The doctors were concerned about the possibility of his diaphragm being damaged, but they did a chest xray and saw that it is fine. He isn't waking up too much. A couple of times he opened his eyes for Nick. He is a bit restless, but seems to be comfortable. The doctors are hoping that he will wake more tomorrow and will possibly start eating. We'll see...like I said, we aren't rushing anything. As before, we are very pleased with the care he is receiving. One of the surgeons stopped in today and said that he will be here all weekend and would like to be able to send him home at that time. We aren't getting too excited about that. Landon likes to do things on his own time, kind of like his dad.

These were from last night. In the bottom one, you can kind of see the machine he is connected to for medications. He also has wrist restraints so he doesn't pull anything out. Those have been taken off. We used socks as mittens and have even taken those off for a while also. However, as he wakes more they might have to be put back on.