Today he really surprised us, we did a trial of a couple of hours on only his nasal canula instead of the bipap vent mask nor the rebreather mask. Much to our amazement he was wide awake and happily maintaining high O2 levels and a comfortably low heart rate which meant his body was at ease with the canula. From his demeanor we could plainly see how content he was without his entire face covered up with all that equipment!! What an amazing string of improvements he has made these past couple of days! We are so proud of him!
Saturday, August 15, 2015
Wow! What a difference a week makes!! Just a few short days ago on Monday we were afraid of how many days we'd have left to love on Dori as we brought him home from the hospital. Today less than a week later he has shown us how powerful the curative powers of home sweet home can be. His energy levels are up, he's moving his head and feet to music, and is back to giggling.
Friday, August 14, 2015
Ben and Alex enjoyed their first day of school. We were so excited for them and nervous at the same time. For some inexplicable reason I came down with a nervous laughing attack while Chris was driving and it didn't help Alex's nerves and Ben was saying "why are you laughing?" And I was all "I don't know!!?!"
They seem to like it and even overheard Alex tell his friends "I think I made a girlfriend today." I don't know what that exactly means but it sounds like it went good. Ben said his Spanish teacher is "super nice and positive" and he seemed to enjoy talking to everyone. Alex asked everyone in his class to pray for Dori.
Last night was their fall sports kickoff and today was only a 1/2 day so week one is a win!
Wednesday, August 12, 2015
Dori just finished Facetiming my sister. He didn't say her name while she was talking to him but as soon as I put him down and turned to talk to Chris, Dori started laughing to himself and saying my sister's name.
This is what I captured after I started recording ... So cute! Click on the YouTube video to see
Aside from Dori keeping us all on our toes, the nice people from Make-a-Wish foundation stopped by to visit. As soon as they walked in the boys were happy since they brought them a new football, a new basketball and a new remote control monster truck for Dori to watch.
They gathered a lot of information about all the things Dorian loves to grant him a special wish. We named off his special songs, his favorite singer, his favorite food, etc. I'm pretty sure whatever they are able to do with such short notice will make Dorian feel like a total superstar! Ben and Alex also helped give their input like "when we watch sports we can't cheer too loud or else it scares Dori and he starts crying" and "if someone sings for him it can't be a loud band or he'll start crying." I'm really glad they chimed in for two reasons 1) they took pride in talking about Dorian and remembered little details that make all the difference and 2) Chris and I were so overwhelmed trying to think of what Dori would want that we hadn't thought of little things like that.
Monday, August 10, 2015
Thankfully there was no need to use an ambulance to go back home. He was in a low enough O2 requirement that he could go safely with the use of an O2 cylinder and a rebreather mask.
Chris has been running around all day like a mad man getting meds, getting groceries, getting final school gear for the boys (since they start on Friday) and only once did I burst into tears out of frustration.
On the other end I've been hassling our nursing agency since last week to give us more skilled nursing hours since his condition was obviously taking a more serious turn. After many phone calls, many emails, many ALL CAPS texts and the help of Miss Kathy our hospice Coordinator Nurse, we finally have threatened enough people that all is finally on the right track. Now the fun part will be to actually find the nurses that will be working the new hours, but we'll take one adventure at a time.
Here are his perfect little toes resting on the ottoman, his new command center so that everyone in the house can have easy access to him. He truly is happy to be home. He asked to look outside so Chris picked him up and Dori rested his sweet head on his shoulder and looked outside to the backyard for a while and was satisfied.
Thanks to all who have prayed for Dori and to all our amazing medical staff and Kathy with Community Hospice of Texas for making this transition so great. Dr Gelfand has been such an important player in Team Dorian. He talks to us and asks us for our input like we are all equals-- all with the same intentions to get Dori as cozy and happy as possible. God blessed us when he put him in our path 6 years ago.
Go Team Dori!!
Sunday, August 9, 2015
We are happy to getting everything ready for Dori to come home tomorrow. Today we transitioned him off IV fluids and switched him over to a g-tube down his nose for pedialyte fluids to keep him hydrated. He is still enjoying his meals by mouth by spurts. Today he was laughing and wiggling his arms and tapping his feet to the beat of the music.
Ben and Alex had a busy day so we were in and out of the hospital, Marcia and Viktoria spent time visiting with him while we were gone. Ben had a scrimmage game and I was Alex's date to the Mother Son 6th grade pool party. Everyone was super nice, but it's just really weird answering questions like "how many kids do you have?" and "what grade is your younger son going to be in?" Normally Chris and I always hang out with people that already know all our back story so it was a little adjustment today but I'm thankful that all the kids and moms seem like really good people.
If Dori is able to be under a 60% O2 requirement then we can take him home in our car, if not we'll take him home in an ambulance. Dori always has been a "go big or go home" type of guy so of course his return home should be similar to a presidential motorcade 😊.
Tonight I've been face to face with him in his hospital bed so he was trying to scare me saying "BEE!". He was closing his eyes then opening them real fast like he was launching an ambush attack on me. So when I screamed scared of course he'd start laughing. I got a good pic of him laughing under his mask at me.
We're focusing on having as much fun with him as possible, and Ben and Alex have been very good at giving him lots of kisses and talking to him. Dori always loves it when his brothers talk to him and when they play around him so we know he's enjoying having them around. I'm glad they have 4 more days at home until they start school on Friday so they can spend quality time with him.
I can't imagine going thru all of this all over again without Chris and without all our close friends and family. There will be plenty of time to say how much this sucks and how sad things will inevitably be so for now we continue to love on Dori, play with Dori and let him eat and scare us as much as he wants. He is so awesome. He is the spunkiest, most stubborn lover boy I'll ever know.
Saturday, August 8, 2015
Dori is saying "snuggle time" and "cheese!" and "I love you!" under his mask. He's feeling the rthymn to the music we play him. He ate 3 good meals today and we look forward to what tomorrow brings.
So what do you do when you're bored at the hospital? You take selfies! He was truly smiling and saying cheese under the mask, but you can't really tell from the picture!!
Just in case you didn't know, Dorian A. Johnson is a stud. Yesterday afternoon he became very lethargic and unresponsive to our voices into the evening. Mid afternoon Ben and Alex came to hang out and chat with Dori and give him lots of kisses, then they left to do some back to school shopping with Chris.
We had heard his Carbon Dioxide levels were very high but it wasn't until Chris left to spend some time with the boys did we get the news that his CO2 was through the roof. His last labs had shown that his levels were so high that they weren't even within the measurable range. In as calm and kind way as possible they told us that with that much CO2 in his body he probably wouldn't be able to make it through the night due to the high toxicity levels.
I put the sos call to Chris and he dropped off the boys at Mike & Stephanie's house and came back to be with us as quickly as possible. During that time the staff was able to run more blood gas labs and with just a couple of hours Dorian's levels had slipped down to "within measurable levels". At that point he was a little more alert and was saying repeatedly under his muffled mask "hungry! Turkey! Turkey! Turkey!!" over and over again. Then by 2AM this morning his co2 levels were checked and again his levels had slipped down even lower! That was huge relief to us, because we weren't emotionally ready to have one last night with our big guy.
Since then he has taken two breaks to eat his beloved turkey and yogurt with the help of lots of oxygen switching and people standing around helping us. He has perked up listening to Chris's music this morning and was bopping his head to the beat and drumming his tummy with his hands. He isn't as irritable and keeps telling us (and any medical staff that comes into the room) "I love you!" He's even been laughing and calling out for Wynnie a couple of times which has been so sweet.
We've had very direct and honest discussions with all the staff who we trust and know well, and it is clear that Dori does not have years nor even months left. His heart has deteriorated to the point where it's increasingly hard for his body to work. Everything that is happening right now is very reminiscent to how Wynnie was a few weeks before he assed. We'll continue to give Dori as much love, laughter, turkey and music that he can handle. He is happy and we'll stay on course to enjoy him every single minute we can. Thanks for your continued prayers for our comeback kid!! Here he is tapping his belly to some UB40 jams.
Friday, August 7, 2015
Last few days while I was out of town Dori wasn't feeling great. He was prescribed another round of steroids to help him get over this hump but as of yesterday evening he wasn't wanting to swallow anything, not even food. He's leave things in his mouth and let it just sit there.
So this morning without him eating and without him being able to take any of his heart meds or steroid, we were afraid he's begin showing signs of dehydration so we brought him into the ER.
Thankfully nearly half of the medical team recognized us immediately and did their best to put Dori at ease. He was getting respiratory assistance but when they switched him over to give him a breathing treatment his O2 dropped down to 20 (ideally he is in the upper 80s-90s).
They bagged him until he stabilized to normal then placed him on a bipap to give him extra help. He was breathing completely on his own with the bipap, but a few minutes ago had to be bumped up to his bipap helping him make more forceful breaths. Thankfully has restored to his normal color and even was telling the ladies "hi!!" and "hungry!!" through his bipap mask.
Once all the medical info was updated in the ER he was brought up to the Picu. Before we left the nurse down there complemented Chris and I on how calm we are. Chris said the main reason we are calm is because we have a concrete plan and don't have to make emotional decisions because we've already made those ahead of time.
Again it's nice to see so many familiar faces in the Picu from past visits with both babies.
After chest X-rays it looks like he has pneumonia and his heart has gotten worse since his last heart scans a few months back. If the heart isn't strongly pumping the blood thru the entire body then his body isn't going to work as well... Especially the lungs. That's what we may be looking at. His heart may be making him work way harder than normal, like if a normal person ran up a flight of stairs.
He is more verbal and has started hitting his nurses so that sounds like he is feeling a little bit more stronger and alert which of course are good signs. He always likes to feel in control so he has had a firm grip on his tubing.
We'll continue to monitor him here in the Picu. They have a great team here taking care of Dori that are in close communication with our specialists so we know he's in the best hands. Please please no visitors -- your prayers are most gratefully appreciated and are is what is most helpful to our family at this point.
A huge thank you to our friends taking care of Ben and Alex (the Caracalas family), we love you guys.