Walker Kelly John Bush Journey to life

Good evening everyone! Walker had his first doctors appointment today with his normal pediatrician. He measured in at 21 1/4” and weighed 9 pounds 13 ounces. His pediatrician said he looked really good and said that we can up a couple of his meds a little since he is gaining so much weight. The main one we asked about is his gas meds, he is super gassy at night so wants to help him a little in that aspect. With him home it has been an adjustment, we are learning the schedule that Children’s had him on and trying to stick that as best as we can. There has been some times where we just don’t hear our alarms on the first time and wake up in a fright. His pulse oxygen machine keeps us on our toes as he likes to set that off and have everything if he does need oxygen. Children’s set us up to help him before help can arrive so that is great. His dogs are absolutely loving him. Moose wakes up goes over to his bed makes sure he is good and then go back to sleep. Dottie waits till he is on the ...

After 47 days, we were finally able to bust Walker out of Seattle Children’s Hospital! 🤎 Yesterday was a big day for our family, we felt like this day was never going to come, but finally it did! Leaving the hospital, so many emotions ran through us, happiness, excitement, joy but also sadness and so much thankfulness, along with tears. It’s been a long journey for our family, one that is far from being finished, but we are finally able to all be together in our own home. Seattle Children’s became our second home, we met so many amazing doctors and nurses, ones who showed so much care and love to us and our little boy. It was so bittersweet to leave because they all left a mark on our hearts. Our first night went well! The dogs were curious and so far Moose is obsessed the most with Walker. Constantly checking on him and is up with every feed. Walker has seemed so happy and content. I think we can all finally breathe now that we are all together. 🤎 With bringing Walker home, there is...

Hello everyone! We decided with him doing so we’ll start doing weekly updates or when we have big milestones. With this I did have a very busy week and have been taking care of myself as I did get a little head cold and needed to get better from that. With that being said here is the week Walker had! Walker graduated out of the nicu and into a regular room! he is on a big boy room, they don’t need to monitor him very close anymore and a day later they decided he didn’t need the high Flo and he is doing so well without oxygen! A couple days after we started giving him some food through his mouth not much but starting oral feeds. His doctor came in and said he is tracking so well that we have a couple little milestones away from him being able to come home! Today we got here and he did not have any wires on him, they turned off all of the monitors and said they don’t need to have them on anymore! With this we were able to take him out on the rooftop garden and enjoy the outdoors! We are ...

Happy Father’s Day! Happy Father’s Day everyone! Today Walker had a great day! He is 5 weeks old today! no SVT since 6/3 respiratory 3l at 21% unsure about weight as his new bed, waiting to see what tonight’s weight is to determine what the change is. Brandi had a hair appointment and let me sleep in and was needed. We went and hung out with him today and his primary nurse was there again today as she was yesterday and helped Walker make his first Father’s Day go for me and it was amazing. She also made a 1 month milestone card for him as well that is so sweet! She is very good with the crafts and make his room feel like his second home which is great! He was awake for a few hours today and loved that we were there to be with him. It was a great Father’s Day for me and just getting to be here with him with a bonus Father’s Day. I am heading back to work this week and Brandi is gonna try this week by herself down at the hospital with him. Tomorrow is a big day for him with dropping do...

Good evening everyone! Morning rounds information: weight 3390 grams no SVT in since 6/3 respiratory 3l at 21% plan for today; have a relaxing weekend. Walkers favorite nurse was with him today, she made the decision that he didn’t need his isolet anymore and was ready for a crib. When we made that change Walkers great grandfather and great grandmother came today and visited with him. They both had a great time and held him combined for 3 hours and he was sleeping the entire time. He was so great while they were there. After they left it was time for a diaper change and the little guy got me good with a bowel movement. It was quite and episode where we had to change linens and everything. We then chilled as Brandi took a personal day for herself where she got a massage and just relaxed for the day. Walker and I watched some nascar today and then it was time for the next diaper change and the little guy peed on me! I don’t why he decided today was the day but told him good thing you di...

Good evening everyone, Here are the morning rounds notes: weight 3330 grams respiratory level 3 at 21% feeds at the same no cardio updates plan for the day- continue with the level 3 at 21%, remove the stitches on his g tube. Walker had a great day, when we got there is was sleeping calmly. He heard us and just started smiling and waking up. After his stitches came out Brandi held him for quite some time. We put him back in his bed and he slept most of the afternoon and we were fine with that. He was so calm and definitely not in pain anymore. We noticed that he likes to sleep with his feet out. We tuck them back in and he just puts them back out. We will need to bring some socks in for him because his toes get cold. We did get some good news today. With him being in at children’s for 30 days he qualifies for secondary Medicaid. Meaning that it is going to help tremendously with some of the medical bills/expenses and is taking a huge amount of weight off our shoulders. We will still h...

Hello everyone, today was a big day for Walker! He is officially 1 month old now! morning round recap: weight is at 3320 was very peaceful this morning no svt respiratory no more dex drops and dropped to level three at 21% feeds are good at 70 ml utine output but no bowel movements which is common with not eating for 36 hours. plan for the day get his high flow down to level three and let him rest some more and let him have his 1 month day as a relaxing day. We got there before rounds and he was so much more of the happy go lucky baby boy wasn’t fussy at all. He did have his first bowel movement after rounds and everyone was happy with that. At 11:30 we gave him a bath (didn’t take pictures) we did take pictures after the bath. The nurses called it his photo shoot for the day. he was so good during all of this wasn’t to fussy and was just taking everything in. We did have to leave shortly after this to take care of some stuff at home but we haven’t gotten any calls about him being to b...

Hello everyone! we did decide last minute that we were going home last night with him having a great night nurse we took off, we did sleep in this morning as well after have a really long day yesterday. Here are the morning rounds information: G tube looks good surgeons came by and said we are a go for feeds through it. So now getting food! weight this morning 3330 grams, iv still in giving him fluids until we are back to his full feeds of 70ml which will be this afternoon. respiratory side no changes today tomorrow stopping the dexamethasone drops in his nose and then see if he can ween down off of level 4. cardiological side nothing has changed. When we got here this morning he was still not a happy camper, we think he is still sore from everything and want to give a him day of rest the team has been monitoring his pain levels as well, they are giving him meds for that to help. Physical therapy stopped by to check on him and she said we are gonna stay where we are at so far due to su...

Hello everyone, today’s update morning rounds weight at 3225 grams down 75 from yesterday. no SVT started no feeds at midnight last night and some of his bloodwork came back high. Adjusted his fluids from 120 to 140 this morning he is a tricky one to get an iv in and the only place they could get a good one was in his head. When we got here was very scary looking but he is doing well with it. surgery scheduled for 11 am We got here before rounds and the only thing on the agenda today was to get his g tube in. So we snuggled him as much as we could before he had to go back to surgery. Surgery was a little behind schedule and didn’t take him back till 1 pm. At that time Brandi, Glamma, and I went got lunch and ate on the rooftop garden, this spot is awesome at the hospital let’s us get some fresh air. Be out in the sun and gives us a spot to eat lunch as well. We got done with lunch and he still wasn’t out so we just waited in the room and his nurse Katie came in and said he is done! He’...

Happy Sunday everyone! Today was a very calm day: lost 75 grams nothing from the cardio team keep feeds the same 4L at 21% Brandis mom and Hailey got to meet him today. They got to see everything we are going through and fully understand. We wanted it to be a very calm day with how big of a day he is having tomorrow. The last thing we heard is his surgery is at 11 and it will take about 30 minutes. They will stop feeding him at midnight tonight and will not feed him through the g tube till after it heals, that being said they will put his feeding tube back in his mouth until they are comfortable with his g tube. This is his first time under anesthesia and we are nervous how he will do. We ask that all of walkers warriors please say a prayer tonight for the surgeons guidance and help them do the best they can. We will give you all an update once he’s out of surgery! Love you all Walker,Brandi, Tyler

Evening! Here is the update for today, gained another 50 grams no changes to his o2 with the surgery coming don’t want to change anything no SVT plan for today get his butt feeling better. He has had really bad diaper rash for a week that has now turned into a wound. They are adding stuff into his diaper to help. Today he got to meet a couple of his aunts, we got to hold him and while holding him he decided to spit out his feeding tube again. With this we are now convinced he want to get the g tube surgery. We left at noon to go to Brandi’s uncle funeral and we have not heard anything and he has just been having a calm day before his surgery. We did get told that they might change his surgery as it’s not high priority but they want to get it done. Hopefully he doesn’t get bumped. This is what we have for an update, we are gonna be there more tomorrow and will have a better update. Love you all Walker, Brandi, Tyler

Hello everyone! Sorry for no update yesterday but here is what we have today gained another 10 grams total to 3250 grams (7.16 pounds) o2 still stable at 4L at 21%, the nasal drops are helping increase fluids but drop down calories as his glucose. Increase feeds to 70ml seeing how he tolerates his new splints he got yesterday to help him with mobility in his wrists confirmed he will have a surgery next week for a g tube to be put in his stomach for feeds plan for the day: relax no tests, specialist, or procedures. Loves his head scratchedHolding his own pacifier When we got here he was kind of awake and when he heard my voice smiled immediately! Got to hold him right when we got here and he decided to spit up his feeding tube while he was eating so a little milk all over my shirt. Nurses came in and put it back in and he was all good again! He has been very awake today and responsive looking around the room and focusing on us. cranial facial stopped by just to say hi nothing important ...

Good evening everyone! We have a two day update as I was at work very very late yesterday and couldn’t formulate a update last night so here’s what we have for two day. Day 1 Ice, no medication.  -gained 90grams  -they don’t think it’s acid reflux related with his secretions  -doing dexamethasone drops for his nasal airways, if that helps then they have their answer and would talk again to ENT  -oral secretions may also be from his feeding tube, so they are also talking to general surgery to talk about the feeding tube in his belly. Just to start the conversation.  Had a episode of SVT for 3 minutes and was settled by one does of the medicine. Cardiology came by, they said they will keep trying to increase his sotalol dosage and doing it 3 times a day instead of 2 times. They have also come up with the diagnosis of Wolff Parkinson’s White for the reasons of his SVT. He got lots of snuggle time and is just chilling. Ablation is usually around school age, the...