Walker Kelly John Bush Journey to life

Hello everyone! So Sorry we haven’t had an update in a couple days busy with work and just trying to get into the new normal! It will take us some time getting used to but also want to keep you all informed! Walker has had a eventful couple of days! He is up to 3100 grams now (6.9 pounds) he is eating 62 ml with fortified milk with some formula added as well. After his drops in his nose stopped they did drop him down to level 2 yesterday. With that he did have some trouble breathing and adjusted it back up to 3 and he is doing great on that. Shortly before they made that adjustment with his breathing he went into SVT for about 40 minutes. The meds they have been giving him weren’t working so they started a new med and had to give him 6 doses to come back out of SVT. We got here today and nothing hasn’t really changed since yesterday no new things no SVT, eating well, and just relaxing, his favorite nurse is here today and we are just hanging out with him. Monday the plan is to drop him...

Hello! Have another update for everyone! Walker had another uneventful day. He had a couple visitors, cranial facial and some of his favorite nurses. Cranial facial just checked in to make sure we didn’t have any questions. Which we didn’t, and here is his morning rounds information: -back to birth weight, gained 90grams -stable respiratory -done with nose drops today  -continue with renal formula  -if he remains stable with respiratory they will lower high Flo tomorrow They did drop his feeds a little to 65 ml from the 69ml to see if he would retain a little more, they did add formula to the milk to help with him getting more calories. Other than this he got held most of the day and Brandi got a few smiles from him today as he was a happy boy. He is doing great with most everything and is just in this state of maintain and conquer. We are safe to say that he is definitely in a stable condition at this time and the doctors are trying to keep him at the same level to make sure ...

Good evening all! Here is today’s update! I was not there today went back to work but was told informed all day and kept track of what was going on. Morning rounds information; -Lost 120grams  -Stable on 4liters high Flo  -They think weight loss is from urine output and fluid shifts  -increasing fluids with his food. Went from 64 ml up to 69ml -They talked about putting an IV in tomorrow if the increase in food doesn’t help.  -nasal drops stop tomorrow, with this if he maintains what he is doing with his breathing then we get to move to a lower level on the high Flo. They started fortifying his food more today with some more supplements and giving him more calories. When Brandi got to hold him today someone decided that they were gonna show her, his new trick and that was how to smile! I got sent videos of it and couldn’t help but smile myself. Walker did have physical therapy today and she rolled him on his side, his belly, and his other side and the little guy di...

Happy Memorial Day everyone! Hope everybody had a great and safe weekend. Here is the recap for today. The morning huddle with the doctors, level four is still good and breathing at 21%. His sodium levels did go up so they were talking about weaning them down from that a little bit. They increased his feeds To 62 mL and also have been fortifying his milk for the past two days. They did not have any big plans for him and wanted to have him enjoy his holiday. with this today, we had a very relaxing day with him. We got to hold him for quite some time and we also gave him his very first tub bath. He was not sure about it at first, but once we got the warm water on him, he thoroughly enjoyed it. after the bath, he was up for about three hours, looking around and taking in the entire room during this time, two of his favorite nurses stop by to check in on him as they had not seen him since he had his breathing tube taken out. They were very impressed on how well he is doing and surprised to...

Good evening everyone! Today we have a very short update! He had a very calm and relaxing Sunday! We slept in and arrived shortly after rounds this morning, with the morning rounds it was one of the shortest meetings we have had so far! He had one episode of SVT yesterday afternoon that last 5 minutes so they upped his heart rate meds again. He is still at 58 ml of feed and he is doing great on level 5 on his respiratory high flow that they felt comfortable bringing him down to level 4 today. His sodium level is low so they will be giving him a supplement for that and they want him to start putting on some weight so they beefed up Brandis nutrients for him today. When we got here we went straight in for some snuggles, I held him for a hour and a half and watched the Indy 500 with him. Brandi held him for a hour and a half, then with today being Papa Curt’s last day here we let him do a lot of snuggling today. Cranial facial stopped by to check in and said he is still doing great and wa...

Good evening hope everyone had a good day! here are some updates for Walker today! Brandi let me have a guys day today to go fishing with my buddies and take a day away from the hospital and go have some fun. Thank you so much for letting me do this Brandi had a good day caught some fish and a really nice sun burn. Anyways here is some of the things I was told today from Brandi and wanted to keep you guys up to date. From rounds this morning; -Potassium is down  -High Flo 6 liters 21%  -Plan is still to remove pic line  -2 episodes of bradycardia yesterday lasted 15-30seconds no change in oxygen.  -58ml feeds  -moving to high Flo to 5 liters That Was the plan for the day. He did get some visitors today since I was off fishing he got to meet his aunt Jenn and aunt deyanna. They had a good time with him and were happy to meet him. After they left Brandi got to snuggle with him and have some one on one time and then it was time for the pic line. They took that out....

Happy Friday everyone! We went down early today and got some good time with him was there for rounds and we have great news! He has been killing it! His levels are still good, has been kicking butt with the high flow! And he got bumped to 54ml of food today! They are gonna do another round of labs this evening and if that comes back good he is getting bumped to 58 m/l of food tomorrow. With that they don’t need to give him any fluids except his food and some meds! Yesterday I did mention stuff about his picc line and did bring this up during rounds this morning and they did tell us that he is doing so good that we are gonna wait one more day to take that out till he is on full foods, so that will get taken out tomorrow. Respiratory assessment he is doing great left his levels the same on that today and going to stay like that today and maybe tomorrow, no more afrin for him and that’s why no changes with the high flow. The boy has some lungs on him and not afraid to tell you when he is ...

Hello everyone! we are doing one update today, we slept in today and got the call from rounds that he was still doing amazing! They upped his feeds again to 47 ml today. They are weening off his pn and lipids. By tomorrow they won’t have to give him many more fluids and talking about taking his pic line out. We were a little concerned and asked if he can keep that in for a couple days to make sure his levels are still good, with how hard it was to get a line in him I think it’s a safer way to do it. The doctors agreed as well! When we got here we were welcomed by one of his favorite nurses Katie. She said he is doing great! We held him for about 3 hours total and papa curt came down to visit him again. By this time respiratory came back in and said has he not been making bubbles with the cpap for long? We went he’s breathing really well through his nose and had his mouth open. So he went and talked to the team and guess what? He graduated out of the cpap and now has a high flow nose tu...

Good evening Gonna keep this one kind of short as we both exhausted after an exciting morning and have been going non stop since he came into the world He is still extubated and is doing great with the cpap, the respiratory team did take his mask off this afternoon and let us get some photos of him without anything on his face which we really appreciated! While the mask was off he didn’t have any complications and was doing great! His potassium numbers are still really high so they are gonna give him some meds this afternoon and monitor very closely (hourly tests) till it is back in a normal range. He is also getting a steroid to help with his thyroid as of right now. There might be some issues with his thyroid that coincide with the apert syndrome. I am attaching to links to the top 2 hospitals that work with apert syndrome with the best explanations and what to expect. Yes I know that Seattle Children’s is on here but if you google top apert hospitals these are the top two. There are...

Walker did an amazing job with his tube being pulled! They did place a cpap on his nose and he is using it great! Brandi got to hear his cry for the first time which got us all emotional. Doctors have weened the cpap down to 27% already they are really happy and proud! We are as well, he is definitely doing great! HUGE milestone today!!

Good morning all you warriors! Today is a big day for Walker, Brandi and I had a heard time sleeping last night due to just sheer excitement for him. We made it the hospital 5 minutes after rounds but did get the schedule for the day. fluids look good potassium is up so we are weening off that. Calcium is down so replacing the potassium for calcium. Feeds are gonna stay the same as he has a has a lot of other things going on today. He is getting an echo to look at his little heart again and make sure it is still looking good. Upped his meds for his heart and hopefully reduce the chances of SVT. At about 11-12 today they will do the extubation and hopefully he can breathe on his own. They have done drops in his nose to help getting rid of any secretions in there for when the do take his breathing tube out. hopefully get to hold him without the tube in and give him some more lovings. We have not heard of any specialists stopping by today except ENT to do the extubation and genetics to gi...

Good Evening Thought I would do this update a little earlier and as I am still in the nicu. Walker had a very busy but enjoyable day. He got a lot of snuggle time today! Curt (my dad) traveled up here to be with us got here on Sunday and had him semi quarantine before he got to see his grandson and came in today. So he had one of his first visitors. What happened after the first update today: He got a bath from us while in his bed, cardiologist came in and said his SVT episodes are not uncommon or they aren’t really worried about him and just upped his meds for that a little to see if that will help, that being said he did have 5 episodes of it today the longest one being 3 minutes shortest being 10 seconds. Cranial facial stopped by and get us a heads up on what there thoughts are for procedures in about a year they will want to do. And then the genetics team did stop in and gave us preliminary results of the genetic sequencing test they started last week. They have been able to confi...

Good morning everyone i just want to start off by saying thank you so much for your donations! Brandi and I both woke up and saw it and cried. Walkers warriors are amazing! We got here this morning and saw a familiar face at his nurses station she is absolutely incredible with him and she has been with him a few times now and it’s awesome to come in and see nurses that we have worked before and know that he is in great hands! Okay rounds information: Levels are still looking good, all the things they have been looking out for are still in the normal ranges want to keep giving him potassium as that leveled off for the first time yesterday. respiratory stuff he is still doing amazing lungs looked the best they have this morning, they are still turning the vent lower and lower, the team is meeting with ENT (ears, nose, throat) today and discussing a extubation in his near future. Might need another scope in his mouth and nose to make that decision. fluids still doing great upping his flui...

Good evening! Today was a very busy day! Walker was a very popular guy today. He met with ENT, endocrinologist, orthopedic, cranial facial, podiatry. We did get his ct scan results and cranial facial came in and showed everything. They explained a lot, showed us the scans and explained every detail and was great. They did explain to us that he will need a surgery around 1 year old for some stuff in his skull which we knew about and was better news than we thought. And he reassured us that this is some fixable things. When orthopedic they told us that the things they are looking at will not be on the radar till his is at least a year old maybe older so that was good news. Endocrinologist came in and said they want to see him in a couple weeks. And then ENT we had them come in twice the first one came in said that they saw that one of his nostrils is open at 3.5 mm which is the size of a aux cord now and the right side was inconclusive. So they weren’t exactly sure what to do he got a ph...

Good morning all! We decided to wake up earlier today and get down here for morning rounds and be here early in the day for his team to come check on him and be able to talk to us. While we were on our way got a phone call from his nurse and told us don’t be alarmed if the room is empty we are taking him down for a head CT scan and he will be back quick! She was right they weren’t gone for very long. Right after that morning rounds with the doctors and they told us all good things, still on minimal help from the ventilator and dropping his PEEP down to 6 last night and they want to drop it to 5 by this afternoon! His levels that they have been concerned about (potassium, electrolytes, and calcium) have all been consistent for the past 18 hours which is good! They are increasing his feeds and fluids again today with his feeds up to 33ml every three hours! What’s wrong button are you smiling buddy or are you just blowing bubbles? So things we shall see today and people we will see are op...

Good evening everyone We did the same thing today where we set the phones down till we saw the Warrior. His stats are doing great they made some more changes to to his ventilator and passed all of that today! They increased his feed some more up to 25 ml every three hours which is huge considering Thursday he was only getting 8 ml every three hours so that’s amazing. Today was a very chill day for him no major tests, no doctors messing with him to much, we both got to have skin to skin today. Brandis second time, my first and let me tell you having a baby sleeping amazingly on your chest and you look at it he monitors and everything is in an absolute amazing state makes you feel absolutely amazing. I also got a couple of Brandis friends to come down and take her away to get pedicures and lunch to help her relax and have some time for herself. through out the day still more lab results for some things that are low or high and he was pretty close to stable or where they need to be all da...

Good evening everyone! I needed a break this morning from my phone. Needed a morning of recharging and getting ready for a day with our little family. So thought we could do a full day update tonight. We got our morning phone call from the doctors and we got the results from the MRI and nothing has changed from what we already know which was amazing, his O2 is still down in the low 20s last night and all day today. Fluids are getting bumped some more which is good. They also increased his food intake from 15ml to 18ml so they know he is a growing boy! When we arrived the nurses over night wanted to spice up his room some more and made his room white board all different colors and wrote his name so beautifully that we all had that “awe” moment that she took the time to do that. Neurology came by to tell us a more in depth explanation of the mri and they said nothing has changed. Then we got to do some snuggle time! First Glamma Janet got to hold him for a hour, with everything she has d...

Good evening warriors! Today was the best day we have had in a while! We got some amazing nurses for him today and they were great with him! When we got there they were telling us how good he has been for them this morning and they had more information written on his board so we were able to see what all was going on today! His o2 was down at 23%, they increased his feed to 15m/l every three hours, and his heart rate was staying around 120-130 Brandi did get some holding time with him and we found that Walker is having some bowel movement issues regarding gases, we talked to the doctors and were able to help him very quickly but was in some discomfort when Brandi was holding him. We then got the news that a spot opened up so he could get his MRI today so that was a change today but glad he was able to get that done today for the possibility of extubation next week! We didn’t get the results and won’t till Monday which we are okay with. While in the MRI it did take a little longer than ...

Good morning We woke up to some great news this morning with the morning rounds with the doctors! His fluid levels are improving wonderfully, they are gonna increase his guilds so he can retain more. Lungs are getting better on xray. His urine output is absolutely amazing. So here are some things that they are now saying are on the table! his UVC (small iv line in his belly button) they are discussing on removing it weening him down more on the ventilatior upping his food more scheduling imaging and having ENT come back and come up with a game plan for his repair in his nose so we can pull his breathing tube Tuesday or Wednesday! his numbers have come down so no more tanning bed either! this is the most amazing news! We are so happy with how this warrior is fighting! Your prayers are helping and thank you guys so much for everything you guys have done. With this great news we are making milestones but do still have a up hill battle and will still need your support and prayers! This is ...

Good evening everyone We got down to Walker at about noon today and let me tell you when we walked into the room and started talking he went crazy! We got all rinsed up and sanitized and started holding his hand and talking to him and was so happy. He was under light therapy today due to his levels starting to rise for jaundice, we called it him being in a tanning bed all day they have this blanket that does the light therapy as well so he was able to have it all the way around him. Chloe his nurse (she’s been with him two days now) is absolutely amazing. We asked her if we could hold him and went and got someone and mom got to hold him first. She got an hour and a half, it was time for her to get nutritients for him so I got to have some time with him as well! Got almost two hours and let me tell you his stats and oxygen is best when we are holding him. I forgot to say he was a little fussy with mom and we couldn’t figure it out Chloe came in and we were trying to figure what was goin...