I feel like time is flying by now that we are home and even though I am not working yet, life feels so very busy with all of the appointments and such. We got Jaida into a splint and she is doing well with that and managing well at school. The big cloud over our head right now is daycare and our search is currently on pause(though we are still taking names if you know someone who might be interested) due to finding out about a waiver we may qualify for. A friend of Mike's from high school reached out to us last week and let us know that she works with medically fragile kids and told us about a technology waiver for medical needs. If we qualify, we may get in home nursing for a certain amount of hours per week. Based on the fact that Kyler is basically 100% tube fed he should qualify, what we don't know is how much time he will be given. This would be amazing help to us and we would be able to have them come to the house to care for him while we are working(for as many hours as he qualifies for). This friend offered to put in the referral but I wanted to check with our ICD team to make sure they hadn't done one or were in the process. We got the referral made and the next day I got a call to confirm and move forward. We then had to wait over the weekend for another call from the actual person who will come to the house to fill out the application(its like 16 pages I'm told!) and will be our contact if we qualify. That lady called me on Monday and she will be coming to the house on Thursday. The neat thing about this waiver is that it takes into consideration that both Mike and I work outside the home and they try to work with families to get Kyler the care he needs. I am praying that this works out and we are able to have someone to care for Kyler while we work. Over the weekend we did some playing together and we took Kyler out for a gathering with friends. Kyler handled it pretty well but was definitely unsure of so many people and the louder noise level. Luckily we were able to move to another room with baby Dawson and her mom to hang out. Jaida and Gunner had fun playing with friends and for Mike and I, it was so nice to do something normal with friends. This weekend Kyler also got to experience his first stroller ride around our neighborhood. It was fun with Jaida walking(broken wrist and all) with us while Gunner rode his bike with quite a bit of help from dad to get it going when he stopped. Sunday was full of snuggles and then we got a late night visit from Grandma and Grandpa Boyd and Uncle Billy before Grandma and Grandpa headed out in the morning to Florida to see Uncle Shaun for a few weeks. Kyler really enjoyed their visit and smiled at them a lot!
Yesterday Kyler and I got to take Jaida and Gunner to school and then we went shopping for a few supplies. While we were out we ran into cousin Kim and Kyler got to meet her(he also got to meet another Kim from work while we were there)! Then in the afternoon we got a visit from Gary and Judy and Kyler liked getting some snuggles from them! Today Kyler started his morning with lots of loving from Jaida and Gunner. Jaida just loves to hug and kiss him any chance she gets and Gunner likes to randomly give him love. Kyler loves to watch them play, especially Gunner, he just watches him like crazy. In the afternoon we took Kyler for a check up with his pediatrician Dr. Harvey. It was mainly a weight check. Kyler is now weighing 11# 2oz! Since he has gained a pound since the last check up he moved up to the 5th percentile for weight. We also get to try skipping one of the nighttime feeds!! I am so excited about this. It isn't terrible when Mike is home but since he works nights, I am sometimes the only one here half the week and the getting up constantly and only getting smaller naps in between feeding is so hard for me. Now that we get to take one out I will be able to get a good stretch of sleep from 1:30am-7:00am. Kyler has been doing so so with his throwing up, some days he does more than others and I haven't been able to find a good reason for the difference. He often gets really bad reflux early in the morning around is 4:00am feed and we end up in the recliner sleeping. I am anxious to see if he doesn't get the reflux since we are cutting the 4:00am feeding now. We haven't had a good week for bottle feeding. He has been rooting some but the second the bottle touches his mouth he starts tongue thrusting it out or he will awkwardly chew on it. It is pretty disappointing to watch and I am getting ever more fearful that he is losing those oral skills. We try to give him the pacifier but he isn't showing much interest in that either. I even tried a different kind of bottle and no luck. It is so weird to me because if I put my knuckle or finger near his mouth he will suck on it but he won't with a bottle. I am planning to ask the doctors in KC about what they recommend for sippy cups to try with him and when we can try those to see if he can take those orally. I have a feeling they may end up wanting to do a swallow study when we do make that switch(or try to) so that we make sure he ca handle taking liquids orally. Motor wise he has been a lot more alert and we have been working on holding his head up better. We are also working on getting him reach for things but so far that skill hasn't changed much where I feel like his neck is getting stronger everyday. We are just waiting now for the IFSP meeting in a couple weeks to be able to get started on more formal work on his skills. Thank you all for your prayers and continues well wishes as we continue to face battles with Kyler.
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The last few days have been pretty hectic around here. On Monday Gunner started preschool and he loves it already. He got to celebrate his birthday on the first day by taking pudding cups and Kool Aid bottles. He was pretty excited about that. I really enjoyed getting to take him for his first day since that is something I don't normally get to do being a teacher. Also on Monday we had Kyler's evaluation with ICD. They came out to the house and it was nice that I ended up knowing or having a connection to everyone who came. The case manager was who I mentioned last week about going to school with her, then the Physical Therapist was another girl I went to school with at SES and the nurse is the daughter of one of my cousins! They spent some time playing with Kyler and asking about things he can do or does normally. I don't know the exact results of their evaluation but I do know he qualifies for services due to his diagnosis, even if all of his developmental markers were perfect he would qualify in order to head off any potential issues. I do know that he requires some PT for his head control and muscle tone so we will be meeting with the team next week to go over his plan. He is being put on and IFSP which is basically an IEP for kids 0-3. In the meantime we are doing some exercises here at home to work on his head control.
The next hectic part of our week was on Tuesday. After school Jaida came home banged up with some scrapes and complaining of her arm hurting. She had been running at recess with some bigger kids and they were holding hands. The big kids ran too fast for her and she ended up falling pretty hard. Her left hand/arm were a little swollen and we thought she had sprained it so we iced it and gave her some ibuprofen for pain. Overnight she came into my bed and in the middle of her sleep I noticed she wasn't moving that hand at all. So in the morning Mike took her to the doctor to check it out. Turns out she had fractured her bone in the wrist area. She has a bubble fracture on the radius in her left arm. This has not been a medically friendly year for us. Thankfully her fracture is small and so we were given a few options. One option was to leave her arm splinted the way the doctors office did it this morning for about 4 weeks and then moving to a velcro splint for a couple more weeks. The second option was to cast it. Jaida was crying most of the evening last night because she was afraid she was going to need another cast(even when we didn't think it was that serious). The third option was to do the velcro splint for 4 weeks and then add in activity. We choose to do the velcro splint based off the doctor saying that it has faster healing time and it is easier to care for with being able to take it off for baths. We have an appointment after school to go get her fitted for that. Daycare is proving to be as big of challenge as I anticipated. I contacted the Child Care Aware of Kansas and they ran a search for me to look for daycare providers with any experience with feeding tubes. We got a list but of course none of them have any openings. We are still hoping to find someone to come to our home to watch him. We don't have to have someone who has dealt with feeding tubes in the past since we can train someone so we are really just looking for someone who needs something to do a few times a week. I am not totally sure what we will do if we don't find someone before I return to work, most likely we will have to rely on family to help us out until we find something more permanent. The rest of the week I have plans to get some good pictures of Kyler taken, not just iPhone shots! I am excited to get some pictures of him. I have a couple special outfits planned that I am excited for also! Happy 3 months to our baby boy! Kyler got to meet his cousins this past weekend and it was really fun seeing him together with Liam and Lee. The bigger cousins also enjoyed getting to meet him. We also got to celebrate Gunner's birthday with the cousins as well. Kyler is now weighing 10 pounds 4 ounces. We have now been home for almost 2 weeks and things have settled down for the most part and we have a pretty decent routine going on. Jaida started school this week and Gunner will start next week so we made some changes to Kyler's schedule to allow picking up the kids from school. Kyler is now taking 90 mL every three hours. He had some pretty hard days with lots of vomiting on the days right after chaining his amount but that has calmed down some. He has taken a few bottles but not many. On the 16th Kyler had a check up at Children's Mercy. Kyler and I headed down and picked up my mom on the way. We were being seen at the special care neon clinic. After we got checked in and while we were waiting to get called back, Kyler thought he should leave them a present so he puked all over the chairs, grandma, and the floor. That was fun, I may need to start carrying some antibacterial wipes with us in addition to all of the other stuff we take! We notified the workers and they called custodial to clean up what our baby wipes couldn't get too well. We finally got called back and after getting measurements and checking his stats we were taken to a room. His stats all looked good and his oxygen level was 100%! Once in the room a lady came in and started talking to us. She asked if we had been told what the special clinic was for and what we knew about it. I didn't know anything about it or what it was for other that that was where they did the check ups for NICU babies. She explained that in that particular special care clinic-that they called the Neon clinic- only followed kids who had one of three medical histories. The first is CDH, the second is ECMO, and the third is whole body cooling. Kyler only needed one thing to be seen in this clinic and with everything he likes to do more than expected so he has 2/3 of the qualifiers. This clinic is for following up with complex medical and developmental needs. She then explained that she was a coordinator and explained what we were doing there for that appointment and asked about what was happening at home. She wanted to know about any changes we made since going home and wanted to make sure we were getting seen from ICD(infant and child development). After going over our home routine and where he was at feeding wise and also letting her know we had our appointment with ICD scheduled she then talked about the doctors. The first doctor to come in was a neonatologist. He talked with us about Kyler and how he's been doing and then did a little assessment on him. Kyler isn't lifting his head and he should be so he wants to make sure Kyler gets some PT to work on that. It wasn't a surprise and I figured he was going to need some. They checked his lungs and said they sounded excellent. The doctor said he remembered Kyler but I don't remember him at all so I think he may have been behind the scenes working on Kyler's team as the neonatologist and since Kyler was on the surgery team that group was who we saw for the face to face meetings and rounds. After he left then a nurse practitioner came in and she is who specializes in CDH so she sees all of the CDH babies. This is good to have since she has experience with kids like Kyler and will be able to help us know what to expect and deal with in the future. She assessed Kyler too and then talked to us about signs of reherniation. Kyler is at a pretty good risk for reherniation due to the large size patch they had to put in. We will have to watch him pretty closely for a year or two. We have to watch for excess vomiting(even more than he does now), respiratory struggles, bile colored vomiting, and he just being "off". She also went over with us that since Kyler is too young for the flu shot, the rest of the family and anyone who will be around him frequently should get one. They also talked about a shot that is available for RSV. They want him to have that shot but it is something that has to be pre approved through insurance and can be quite expensive so we will be looking into that later on. Then they asked about child care. I will be returning to work in about 4 weeks and we will been needing to find daycare for Kyler. We would like to avoid having him go to a group daycare if possible to limit his exposure to other kids and their germs and the doctors think that is what would be best for him as well. We had hoped he might qualify for some home health nursing but he doesn't so we are now looking for options. We would like to find someone who would come to our house and care for him and play with him a few days a week while I am at work and on the days Mike works his swing shift schedule. Our first thoughts were if we could find a retired nurse who just wanted to love on a baby a few times a week or even a college student who maybe is going into nursing and has night classes. We are now reaching out to anyone who reads our blog, if you know of anyone who might like to take care of Kyler a few times a week(M-F only) please connect them with us! We would train this person on how to do his feedings and care and besides the g tube it would be playing and loving on a sweet baby boy! If we are unable to find someone to come to our home we will have to try to find a daycare spot which is usually difficult with infants in the first place, let along one that would take him with a g tube. Please say a prayer that we find the right person to care for him while I am at work!
On the 17th we had our initial meeting with ICD. The care manager came to the house and it turned out to be a woman I had gone to school with in Solomon. We spent an hour and half going over Kyler's medical history(thankfully I had the blog as a good record of events) and what ICD did for families. After signing the paperwork and going through his history we were done and had confirmed the evaluation meeting to happen on Monday the 21st. They will bring a physical therapist, speech pathologist(in place of an occupational therapist since they don't have one currently), and a nurse. They will do their assessment on him and if he qualifies we will write a plan for him(basically and IEP for infants). I am pretty sure he will qualify for PT and the NEON clinic had requested that he get seen for head lag and tone as well as OT for oral stimulation but we will see once they have done the assessment. As I said before, things have settled down and we are getting a routine down. I finally settled on a video monitor and got it ordered. It arrived this week and it has been so nice for our piece of mind. We now feel much more comfortable leaving Kyler in the crib while we do things about the house. It has also come in handy in the middle of the night, I can look on the screen and see into his crib(good night vision on the camera) and check on him without having to make noise and risk waking him up by walking over to the crib or having to turn on other lights! We have been leaving Kyler at home most of time and will start taking him places for quick trips and just being very cautious of other people around us. He will almost always be covered in the carseat when we are out with him and we will be on high alert for strangers who like to come up to touch babies(I'm not sure why anyone thinks that its okay to touch someones baby but we had a lady come out of nowhere and kiss Jaida when she was just a month old!). We appreciate all of the support we have been given and would like people to meet our little warrior so we are now ready for visitors. If you would like to stop by and visit us please call or text ahead of time and please only come if you are healthy! We have had a couple other things happen this week that aren't directly related to Kyler. On Wednesday after Kyler and I had gotten home from the NEON clinic, I got a text from my dad saying he was in the ER with blood clots in his lungs. I left the kids at home with Mike and went up the hospital here in town. It took quite a while and he was given a room and then I went home to help with the midnight feedings for Kyler. The next morning they found a clot in his leg and are thinking the ones in is lungs broke off from the one in his leg. He has been having difficulty breathing and when I arrived at the ER his numbers were worse than Kyler's had been for at least a month or so. They have him on oxygen support and he is currently still admitted. It has been difficult to go up there to be with him due to taking care of the kids. Mike is working and I don't feel comfortable taking Kyler up there for fear of him catching something that someone else is admitted for. Then today Jaida woke up sounds raspy. This isn't too unusual as she has seasonal allergies and sometimes will wake up sounding that way but after taking her allergy medicine it goes away by mid day. We gave her the daily does of allergy medicine and she went off to school. She came home still sounding bad and she was also feeling stuffed up. We put restrictions on her about being around Kyler and she wasn't allowed to kiss him(she loves covering him in kisses). We are praying that she didn't pick something up from school already and that it is just a flare in her allergies. Thank you all for the prayers and if you know of anyone who would like to babysit Kyler a few days a week(on a teachers schedule :) ) please let us know, the next four weeks are going to go too fast! We have been home for almost a week now and things are starting to settle down some. We are still working on organizing Kyler's things and will soon be rearranging our bedroom to make the space more useable with Kyler's crib and other belongings in there as well. I am learning to deal with the medical supply company and that is kinda interesting. We received the first shipment of Kyler's supplies and already had some issues. First it didn't contain all of the stuff we were supposed to have been getting like Flexi Trak to hold the bolus tube to his skin so it doesn't yank out the Mickey button. We also were supposed to get Mepilex which is the foam dressing material that has a gentle adhesive on one side, instead we got giant gauze pads and tape(which hurts Kyler's skin when it gets taken off). I called the company and they said that we should be getting the Flexi Trak in another shipment but the Mepilex is on backorder so who knows if we will get that(it wouldn't come until next month anyways) so we will be trying to gauze and some reusable pads in the meantime. I will be calling them again in the next day because I just noticed this evening that the spare Mickey kit, that we have to have on hand incase his current one pops out, is not the same as the one we have. The size are the same but the connection type is different. Kyler's current system and all of his syringes and such are Enfit connections and the one they sent is not compatible. I am hoping they can get me the correct one quickly!
Kyler has been adjusting pretty well. He has not been bothered by his brother and sister making noise(and they are good at it!) and will sleep right through it, he even slept through me vacuuming right beside him! I have been letting his sleep during the overnight hours and not waking him to do bottle feeds. I have found a way to quickly hook him up to the feeding pump without disturbing him too much and it makes everyone happier. I struggle getting up so often to feed him each night and thankfully I have some time to adjust before I will have to go back to work. Right now at a quarter till 9, 12, 3 and 6 I get up and measure then warm his milk. Next I have to burp him and hook him up then program the pump and let it run. I then lay back down for 35-45 minutes while it runs and then have to get up to shut it off and disconnect him. I then lay back and sleep for a couple hours until its a quarter till the next feeding time. We had a check up with his pediatrician here in Salina and after a few weeks and getting him up to goal feeds of 100ml every three hours(he's at 85 right now), then we will look at stoping one of his late night feeds and spreading those ML's over the rest of the feeds. I hope Kyler will tolerate this, it would be really nice to get to sleep from 12:30-5:45 in a straight shot! Bottle feeding has been pretty much nonexistent until today. He took 20mL by bottle Monday but nothing else for the rest of the week. Today he surprised me. Around his 3:00pm feeding he was really showing signs and rooting around and even sucked on my finger. This was crazy to me because he is very particular about his mouth and will only take one kind of pacifier and immediately thrusts anything(including the bottle) out. It was still about 30 minutes early for his feeding but since he was acting ready I quickly made a bottle and he downed 35 mL! I was so excited, like seriously you don't even know how exciting it is for him to drink that much after WEEKS of hating the bottle. Then our day got better, right before his 6:00pm feed he was rooting around again! I was shocked! Got the bottle and he took 15mL this time! WOO two in a row!! So exciting, but he wasn't done yet. At his 9:00pm feed he was trying to suck on grandma Jody's hand so the bottle got made and he too 28mL! THREE IN A ROW!! I am so proud of him and made sure he knew it too. Best of all after quite a bit of puke(most of which was caused by mucus build up) all week, he has kept those feedings down! Today was just an excited day around these parts. On top of Kyler's great day, Jaida had meet your teacher night and got to see her teacher for first grade as well as see which of her friends would be in her class. She wasted no time telling anyone who would listen that her brother got to come home. Her friends were excited for her but I'm pretty sure they weren't really sure what she was talking about or what a big deal it was! To add to that excitement today was Gunner man's fourth birthday! He was so excited all day and enjoyed ice cream cake and opening presents. Kyler was sad he didn't get ice cream cake :) Other news in Kyler land is that his testicles have not descended yet so after an ultrasound here in town to confirm that they were there we have been referred back to Children's Mercy to see a urologist. We knew from Children's Mercy that they hadn't descended but it was so far down the list of concerns they weren't going to bother with it at the time. Now that we are home his pediatrician wants to address it now and while there are urologist here they recommend going back to Children's due to Kyler's intense medical history. We be heading back to Children's next week for a check up with them post discharge and we will have another check up at the end of September as well. We also will be meeting with Infant and Child Development here in Salina per referral from Children's Mercy. They will do an evaluation or assessment on Kyler to look at his skills to make sure that with his prolonged stay in the hospital he isn't delayed in any of the areas they can assess. If he does have some delays then they will be able to help up get him the therapy he needs to work on those skills. I knew delays were common among babies who spend a lot of time in the hospital and I have worked with him to try to keep those delays minimal and I feel like his head control is a little bit delayed. He can moved his head side to side but his neck muscles are not strong enough to hold his head yet. He also favors looking to one side and I feel like that is due to him being on ECMO. When he was on ECMO they had his body paralyzed with his head looking to the left and that is the position that he prefers to lay his head now. I have been trying to make him look to the right when I am holding him tummy to tummy to assist in building those muscles to look to the right. I am curious to see what the experts say about his development and am thankful they will be able to help him get early intervention before any delays become much larger. Thank you all for taking this journey with us and we would appreciate continued prayers for Kyler's growth and healing as his battle isn't over yet. Kyler's first night at home was equally exciting and frustrating. It was so nice getting to tuck the big kids in and then just walk down the hall to my own bedroom where Kyler's crib is at. Mike and I made a plan for me to do the 9:00 and midnight feedings while he slept and then he would do the 3:00am and 6:00am feeds while I slept. 9:00 feed was uneventful and I got Kyler swaddled and in bed and then went to bed as well. My alarm buzzed and I got his midnight feed warming. I then had to wake him up to change his diaper and attach the feeding tube hose. From that point on it went downhill. He was super cranky and uncomfortable and just couldn't settle. We aren't really set up very well just yet so I had to stand and hold him for most of his hour long feed while he fussed and I prayed he didn't puke everywhere. Along with his fussiness we were trying to figure out the best way to deal with the pump bag that holds the milk. In the hospital they got a new bag at each feeding, we only get one bag every 24 hours per the medical supply company. So the difficulty we encountered was priming the tubing to get out all
the air so it doesn't get pushed in his stomach. When you are priming a new bag it is very simple and quick, what we found with a used bag is the opposite. The moisture in the tubing makes it difficult to do a gravity prime(I just made that term up) and instead we have to use the actual pump which makes loud beeping sounds as it does it. Also the steps for venting, administering medicines, and actually feeding all took so much longer mainly because we didn't have supplies organized and accessible so we were running around to our different bags and baskets from the hospital getting what we needed. I finally got him calmed down enough after the midnight need to lay him back in the crib. After that I struggled to sleep because I could hear him breathing harder than I thought he should be and just making noises. I was nervous about his breathing and afraid he was going to throw up and I wouldn't know(silent puker remember). Both Kyler and I are adjusting to our house temperature from being used to the cold hospital temperature(I woke up with a stuffy nose). I finally started to fall asleep and the alarms were going off for the 3:00 feed. Kyler was fussy and the pump was putting up a good fight against Mike so I was helping out instead of sleeping. Mike got it going and took care of Kyler while I tried to sleep some. Mike handled the next feeding as well and I half slept as I kept waking up worried about Kyler- as much as I am glad he doesn't have all of the wires on him anymore, I am also missing that piece of mind of being able to numerically see how he is doing. In the morning Mike made up a batch of formula for the day(we make a giant batch and store in the fridge instead of single batches) and we gave him his meds. He finally slept some this morning and was acting much more like his normal self. Yesterday was a busy day for him and the car ride home might have done him in a bit. My mom came to town and was super helpful. She held Kyler while Mike and I started working through some of the mess and that allowed Kyler to get some good sleep(he's used to being held) and is to nit have to worry about him while we got stuff done. Later we left Mike and Kyler at home and went to get supplies for the house. It was nice to go out and do something normal. When we got back my mom cleaned both my bathrooms while I started cleaning up all of my stuff from KC. I am so very thankful that my mom was here to help today and just having the bathrooms cleaned has alleviated some stress of to do list. The big kids are trying to adjust with us and figure out our new normal. Gunner is having a hard time sharing me with Kyler. He is such a mommas boy and has had a couple meltdowns today. We didn't get everything done today but will be working on getting our house Kylerized so that we can opperate more efficiently and hopefully lower the stress level some. Tonight had one exciting moment to end the day, Kyler drank 20ml from the bottle! I am so excited. There is a worry that if he doesn't continue trying to bottle feed that he will lose those skills so the fact that he was able to drink and took as much as he did is a big deal to us! I also am trying something tonight with his feeds that hopefully will let me not wake him up. I am leaving his extension hose primed and attached with the cap on it and sticking out of his swaddle. My hope is that at feeding time I can prime the bag and attach it to run without waking him up. Then I will do his diaper when he wakes up on his own. Wish us luck! Today was the day we finally brought Kyler home! PCU(Parent care unit) was pretty low key last night. We got up every three hours to feed Kyler, change his diaper, take his temp, and make sure all was well. The nurse who was assigned to us checked in at each of his feedings and took the information sheet we had to fill out(feeding amounts, diapers, temp, etc.) and charted those things. It wasn't too hard getting up to do those things but it was hard going back to sleep. Mike and I took turns getting up and it was really nice getting a little longer stretch of sleep. In the morning Mike went over to the RMH to help get the kids around and clean the room for check out. While he was gone I snuggled with Kyler in bed and cried happy tears that today we were finally getting to go home. We got Carol for our nurse today(after she switched with another nurse so she could discharge us-she's who we ended up asking to be our primary but we're going home to soon to get). Carol was super on top
of things and got stuff moving as quickly as possible. We got our things packed up and then had some waiting around to do again. We had to wait for the team to round and for the nurse practitioner to do an assessment on Kyler before we could be discharged. Finally a little before noon she came in to do his assessment and said they team wouldn't be rounding due to an emergency surgery but we would be able to leave as soon as she was done. After she was done we took a couple picture with Kyler in his custom made shirt and the big kids in their big brother and big sister shirts! Kyler's shirt said "Rocked the NICU like a boss" and he managed to not throw up in it until we got home! Kyler handled the car ride pretty well and only got fussy once or twice. Today we got to experience one added benefit to him having the g tube, we were able to feed him through the tube on the way home without having to stop to take him out! It was a little nerve wrecking for me watching him in the way home, I couldn't always tell f he was breathing while he slept so I did a lot of hand checks on him. Once we got home we had a lot of stuff to unpack from the cars and I was feeling pretty overwhelmed by everything. As soon as we got home it was time to feed him again but we aren't really set up to deal with all of his supplies and parts just yet so what was a pretty fast and simple process at the hospital turned into a longer slightly frustrating process here. Shortly after getting home Great Grandpa Bill and Great Grandma Doris came to welcome Kyler home while they were already in town. Kyler sure liked talking to them. The rest of the evening was spent trying to get some things out away and love on Kyler. He wasn't too sure what was happening and where he was and just took it all in. He was so interested in his surroundings that he started getting fussy from not sleeping so we got him to sleep for a nap in his own crib! After Kyler's bath the big kids had to go to sleep. I handed Kyler off to Mike and I put Jaida and Gunner to bed. It was nice to do that again(even if they still whined about not wanting to go to bed and wouldn't stay in their beds) and to be able to kiss and love on them. I don't know how long it's going to take but I bet one or both end up in our bed tonight at some point! Now that we are home I won't be posting everyday like I have been but I plan to post a couple times a week and for sure when exciting things happen or when not exciting things happen and I feel the need to write about it. Our plan for the next couple days is to get things out away from our 11 week stay in KC and then start figuring out how to set up and manage all of his G tube care here at home. We would appreciate your prayers as Kyler will still be working on trying to bottle feed and for health for him so that we can keep him here at home! Love you all, God Bless! PCU day! I woke up extra early and got the suitcase for Kyler and headed to the hospital. My plan was to pack up all of the things we have acquired in Kyler's room before rounds so that we could start our PCU as soon as possible and then Mike could join me once he and the kids arrived. Turns out there wasn't a need for me to get to the hospital early. The nurse wasn't 100% sure the procedure for getting us to PCU so we were waiting for rounds. When they rounded it was just the surgeons so they didn't have the answers we needed. We then found out that there were no rooms available and we weren't allowed to just unhook the monitors and PCU in the bed space so we were back to a waiting game. In the meantime I had learned that Kyler didn't sleep much last night and it showed because he was super sleepy today. Mike, the kids, and Colleen got her mid morning and took turns coming back to see Kyler and then after lunch Colleen took the kids to the RMH to play and rest a little. While they were gone we were not only waiting on the PCU room but also the medical supply people to come. First the local representative came and went over what all supplies we will be getting from the company for Kyler's g tube and the process for getting refills each month. She had planned to bring our "starter kit" with a weeks worth of supplies with her but they were running behind and she couldn't bring the equipment until we got a phone call from the main office(who were supposed to call yesterday or this morning). I finally got the call around 5:30pm right as we were finally getting ready to move to the now open PCU room. We got all moved over and found out that we didn't really have "rules" for our room so Colleen was able to come hang out in the room with the kids and us. At dinner time the kids wanted to eat with me so Mike and Kyler got to hang out and the rest of us went down to the cafe. After dinner(Mike got room service) we hung out a little more and then Colleen and the kids headed back to the RMH to get some sleep. The kids were pretty upset they didn't get to help with his bath tonight but I assured them there would be plenty of baths they can help with once we are home! After they left our night nurse checked in and refilled our supplies and gave us an idea what to expect tonight from them. We will be responsible for getting up to feed him every three hours and do parent stuff and they will check in a couple times to make sure we are feeding him when we are supposed to and be there incase we need anything. They have given us the formula but will still bring his medicines when they are due to be given. Thankfully this room has a tv which I will be leaving on with no volume as a nightlight. The room is in the middle of the floor with no windows and the low level lighting is right over our eyes in bed so I had to turn all of the lights off. Right after Kyler's bath we finally got the supply delivery so we are all set to go home tomorrow. Thankfully we do not have to do PCU for a full 24 hours and all we will be waiting on tomorrow is the doctors to do rounds and then put in the official discharge order! Thank you all for the prayers and please say a prayer that we adjust well to our new normal once we are home.
11 weeks and the end is near! Today started out pretty rocky. All morning Kyler's heart rate was hanging out between the mid 180's to the upper 190's and his respiratory rate was jumping from 90 to 145. His oxygen saturation was good but the other two numbers had me pretty worried. After the numbers didn't lower with sleep I brought it up to the nurse. She didn't seem too concerned since the alarms weren't going off but told me we would bring it up at rounds. I mentioned to her that the nurse practitioner had already been around and I didn't think the full team would be coming by(it was already 10:30 and they are usually there between 9-9:30 on weekdays). She thought they would but then she started paying closer attention to his numbers also. At some point she looked at an informational clipboard and got on the phone and called his team. She didn't realize that the surgery team operates a little differently than the other teams. Shortly after that the nurse practitioner came by and I explained my concerns and she was surprised to see his numbers too. I was very concerned that Kyler was starting to fail being off oxygen because in addition to his higher numbers he was also doing some grunting and was really unlike himself. Michelle(the nurse practitioner) assessed Kyler and determined that he wasn't struggling from respiratory issues but it appeared to be he was in pain from his g tube site. When she touched around it and pushed he cried some and was holding his breath. She said he was splinting it due to pain so we got him started on Tylenol. About three hours went by and his numbers never decreased and he was still super uncomfortable. Finally his numbers dropped slightly but not by much right when Michelle came back by with one of the surgeons. They said that we would continue to keep an eye on it but they both felt it was a pain issue not a breathing issue. About 15 minutes after they left Kyler let some toots that I thought were more productive than they were so I changed his diaper. When I was changing his diaper I thought his circumcision looked pretty red and not healthy looking. I showed his room nurse and she called Michelle back. Michelle came back and checked it out. She immediately called one of the surgeons to come look at it. In a couple minutes he was there and agreed it didn't look good. Part of the ring was coming off but the other side was stuck. The surgeon ended up pulling Kyler's skin off of the ring where it had adhered to. It was super painful to watch and Kyler let everyone in the NICU know where he was. After the surgeon removed the ring and cleaned up the the blood, they ordered for a topical ointment for him. We got him situated and gave him another dose of Tylenol and by his next diaper change his circumcision was looking so much better and more importantly his numbers were dropping! By 5:00 his numbers were all back in the normal range! I learned that our nurse was actually still a trainee and due to short staff they pulled her from orientation and today was her first day flying solo! Kyler's rate was too high to try any bottle feeds today and we discontinued trying continuous feeds overnight. He did ok with them last night until the last hour and he puked so much they decided to just stick with the bolus feeds since we know he can handle those. He did throw up a couple times today but they were not very big volumes! Today I got trained on his medicines that he will be coming home on and I had to show them I know how to draw up medicine with a syringe for the correct amount...good news, I passed! I also got a visit from the nutrition specialist with instructions for mixing his formula. His formula is mixed to 24K which means it has a higher calorie count to it and basically making it consists of mixing a higher ratio of powder to the water than the formula can tells you. I also got a call from the medical supply company we will get all of Kyler's g tube supplies from. They told me to expect a phone call today or tomorrow(I haven't gotten one yet so I am assuming it will be tomorrow) and that someone from their company will be bring us the first set of supplies to the hospital and they will do trainings on how to use them while we are doing our PCU. I am hoping this company uses the same kind of pumps that the hospital uses and that I have been practicing with for last few weeks! Tomorrow I will be taking a suitcase with me in the morning that has my things for staying the night in the hospital for PCU but also had room to pack up all of the stuff we have acquired in our 11 weeks in Kyler's room. Tomorrow is going to be an exciting day between PCU, Mike and the kids coming, trying to get pictures of Kyler and the remaining people from his team of care, and of course anticipating getting to go home on Saturday! I am probably going to have a hard time getting much sleep between now and going home. I haven't felt this level of excitement in a long time and it feels like a kid waiting on Christmas morning!
I woke up this morning feelin' like P. Diddy....just kidding, I woke up feeling like a rock. When my alarm went off I rolled(very slowly) out of bed and headed towards the bathroom. Upon seeing my bright red blood shot eyes I made the decision that I was going to go back to sleep for a little while. I tried to get up several times and just couldn't muster the energy so I set my alarm for 10:30 and went back to sleep. It wasn't the most restful sleep after that because I kept worrying about not being there at 9:00 for Kyler and also arguing with myself that he would be fine with the nurse doing his morning care until I got there. Ultimately sleep won. When I finally made it up to the hospital at 11:00 with his carseat in hand, I was pleased to see our nurse. We had his nurse early on in our stay while Kyler was on ECMO and in the ECMO suite. We really enjoyed her as a nurse and I enjoyed seeing a familiar face. Kyler liked her too, he was giving her some good cuddles! I apologized for being late getting up there and found out I had a handful of people a little concerned that I wasn't there. At shift report she was told that she needed to be prepared to get formula and medicines and just hand them to me and I would do the rest. They told her I would be here by 9 and from then on out she was going to have an easy day(Kyler was her only baby). Well since I choose to sleep and didn't make it at 9:00(or even close) she carried on with his care(and got a few jokes about having to actually do something) and she started getting worried when people from Kyler's team came by and started questioning her about where I was. Maybe next time I should call and let them know I'm fine but just catching some Z's! So now that I was up there and we have an official discharge date, today was about getting things checked off our discharge list. They have to go through all of his care with me and then check it off in the computer as it being something I was informed about and understood. This was a pretty quick process since I have been doing all of his care for a while now. Then I had to watch the Purple Cry video. The big thing on my list for the day was doing his carseat screen. First they had to run the carseat through their database to make sure it was safe and didn't have any recalls. Next, Kyler had to sit in it for the amount of time it would take to get home. I had be estimating 2.5-3 hours when she asked but we Google Mapped it to get an exact amount. He then had to strap in for 2 hours and 36 minutes. He really did not like the carseat to start with, he fussed for a good 5 minutes. Finally he calmed down but he refused to sleep a wink in it and would periodically fuss(which sent the alarms blaring). I wasn't sure if he was going to pass with how much he was kicking and getting mad since it set off the alarms each time but the nurse could tell the alarms were going off because of his kicking not because he was actually desatting. So Kyler passed the test! As soon as she called time, I immediately got him out and snuggled him. He was so relived to be out of it that he just melted into me and fell asleep instantly. It was pretty funny and the nurse and I had a good laugh about it the rest of her shift! With the carseat test done, the video watched, the care cards reviewed, and then tube care checked off , we are now waiting on PCU and we will be able to head home as soon as our time with that is done!
Kyler did get off one medicine today since he is doing so well without the oxygen. They decided to discontinue his steroid inhaler! The nurse practitioner also talked to me about a plan to slowly wean him off of the diaril but not upping the dose amount as he grows until he can just stop it. She also mentioned that she would like to get him off the reflux medicine. He still refluxes but the medicine doesn't stop the reflux it just changes that acidity of it so it doesn't bother his throat as much. She said it would be get off it because of long term side effects, so that will be something we talk with our pediatrician about once we are home. There were a couple changes to his feeding as well. First his amount was getting moved to 80 based on weight and the second is that we are going to try continuous overnight feeding so he can start sleeping through the night. The plan is for him to have milk pumped in from 12am-6am at a slower rate than his day time feeds so that the same amount of milk he would be getting during his 12am, 3am, and 6am feeds will just be spread out slowly that whole time. I am hoping he does well with that and I think he will enjoy getting to sleep the whole time(I hope!) He did really well with his emesis today until shift change. He only had 2 small ones all day and then right after shift change he had a pretty large emesis with another smaller one just a minute later. I spent some time today making a carseat tag that will help us to warn people to ask permission before touching him. I am hoping this will help us protect him from some germs since with clothes on, he looks like a healthy child. I am working on making a medical emergency card that can also be attached to his carseat that will alert emergency personnel of his condition and specifically that he only has one(small) functioning lung. My hope is that in the case that Mike or I am not with him or are unable to communicate with the EMS that Kyler will be able to get the urgent help he will need. I am working with the social worker who is working with the medical team to figure out what the most pertinent information would be to include on this card. Tomorrow should be a fairly slow day with just waiting to get to do PCU but I am planning on trying to make contact with the surgeon who did both of Kyler's surgeries, the doctor that delivered him, and some of the people we worked with during the pregnancy. I am hoping to get pictures of them with Kyler. Tomorrow evening I will also begin getting our room cleaned up and ready for checkout on Saturday. Thank you all for the continued prayers! Have faith and God will provide! Kyler had a much better night and day. Overnight he only spit up twice with just a super small amount each time! This morning he was sleeping calmly when I got there at 7:30 for his echo that was scheduled at 8. When he woke up he seemed to be feeling better but when I looked at his suture the remaining ones were now oozing pus as well as the whole underside having a lot of pus pooled around it. I showed the nurse and she told me to take a picture of it before cleaning it up so I could show the surgery team. Just minutes after I got it cleaned and dried the nurse practitioner came by and I showed her the picture. She decided to not wait on the surgeons and went ahead and cut out the remaining suture. I then cleaned it up some more and Kyler seems to be feeling a little more comfortable already. I was still waiting on the echo around 9 when it was time for his feeding and was told that they schedule them all for 8 and they will just make their way around. Bummer, I'd gotten up early for it. We had a nurse who was training a new nurse today so I didn't do very much of Kyler's care during the day since she wanted to show and let him do as much as he could. It was weird sitting there watching them do everything but I did give some tips from a parents perspective when she was talking to him about taking cues from the parents since it is us who know our baby the best. Kyler was pretty interested in the trainee- he just stared him up and down. I think he might have been a little confused because the trainee was male and Kyler normally has female nurses!
OT was with us for his 9:00 feed and he took 10ml before falling fast asleep. I asked the OT about excersises that we could do to help Kyler take the bottle better and right now it's basically offering him the pacifier and giving him kisses and such so that he has positive feelings with things concerning his mouth. I told her I was never short of supply of kisses for my baby! Things got better as the day went on. First the team rounded and we were still waiting on the echo but they are planning on sending us home on Saturday!!!! Mike and I will do the PCU Friday into Saturday and then we get to come home!!! I am so excited. I have been home once since Kyler was born and I am so ready to get home! Finally it was time for the echo. Kyler wasn't entirely pleased with the situation and it ended up taking a while longer since he was fussing during it. I can't blame him though, the tech was accidentally bumping into his Mickey button which was irritated and sore. Finally he got the shots he needed and Kyler and I got in some good snuggles. Kyler did continue to throw up some throughout the day but the amount he was throwing up was greatly reduced compared to yesterday! In the afternoon I hadn't heard the results yet so the nurse called and they came up to talk about the echo. Kyler's echo looked pretty good and his pulmonary hypertension is gone!!! Praise the Lord! Since he is showing no signs it means that we get to bring Kyler home cord free, he does not need oxygen support at this time! I am so excited but also a little nervous. I am nervous about him getting sick and struggling but they said that if he needs it in the future he can always get put back on it if needed. The echo also showed some fluid around his heart. It isn't serious enough that they are very concerned but we will have to do a follow up echo down the road as an outpatient to check on it. He is already on Diaril which helps great excess fluid. We now have a date for discharge and we are starting to make plans and get things checked off. Tomorrow I will take his car seat up and they will have him do the car seat test! Thank you all for sending up prayers for us, soon we will be home and I hope one day Kyler will get to meet all of the amazing people who have been praying for him and our family! |
Our journey with a child diagnosed with a Congenital Diaphragmatic Hernia (CDH)
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May 2020
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