Sunday, March 29, 2015

Dorian is home!

After lots of paperwork,  medical equipment people making special Sunday deliveries, house sitters and a secret homemade cookie/cupcake delivery we were finally able to bring Dori back home a couple of hours ago! Yay!!!

Dori will only be calm if Chris is holding him so they are posted up watching basketball right now. 

At the hospital he kept asking to go bye bye and yelling out for the boys so I  know he is happy. 

Thanks for all our friends who have checked in with us and who have prayed for us. Although Dori isn't quite back to his baseline yet, we know that he'll get back to normal soon enough. 

Saturday, March 28, 2015

Guys night success

Dorian had a fun time with papi and Marcia last night. He was yelling for Ben, Alex and Luna. He was also eating. 

Today they have focused on taking inventory of all the breathing equipment we have at home and ordering any additional devices he may need. If all goes well then he might be able to go home on Sunday (tomorrow) or Monday. 

I had the BEST night's sleep in ages last night! I slept from 6:30pm until 8:30 pm when both boys started calling me from their sleepover. 

Both boys ended up wanting to sleep at home so by 11:00 pm the 3 of us plus Luna all in my bed while Chris had his slumber party at the hospital. 

The boys had their soccer game this morning so I stayed with them. Now Chris and I switched so he has left to take the boys to lunch and I'm with dori for the rest of the time until he gets released. 

Looking forward to stinker coming home so that all can get back to normal. I know he is missing home of he's calling out for people so I think he's ready too! 

Here he is eating mashed potatoes then watching his YouTube music videos. 😊💜😊

Thankful to our friends for their prayers, treats at the hospital and entetaining the boys for us. We have a pretty awesome "village"!! 

Friday, March 27, 2015

Tired but getting better

Thankful it's Friday and Dori has had a good week of making gradual (albeit slow) improvements. He took a few bites of gravy this morning with me then ate half a yogurt with Marcia this afternoon. He was given a quick sponge bath since he was so hot and sweaty from laying in his hospital bed all day. After his bath he was a bit more responsive and would look at us briefly when we'd talk to him, but then he'd get mad when I'd lean in to kiss him. 

I was so dead tired this morning that when they came into do X-rays at 5AM they couldn't wake me up to place the protective heavy apron cover on me. So after a few attempts they just let me sleep and placed the heavy thing on top of me while they did his X-rays. I wouldn't have blamed them if they would have drawn a beard on my face with a sharpie ... They must have thought my slumber was narcotics induced. 💉😈💉

So tonight Dori is having "Guys Night" with Chris at the hospital. They'll bond while watching basketball. I hurried back home to spend a magical mom/son bonding night with Ben and Alex. They missed me so much that they actually waited 5 minutes after I arrived home to ask if they could spend the night at their friend Aidan's house. Ha! 

So now it's just me and my loyal puppy Luna... I'm looking forward to sleeping without any interruptions tonight and look forward to seeing all my bugaboos tomorrow morning! 

Here's a picture of Dori right before he had his bath. 💜 He has a lot more color to his face and a little bit more twinkle in his eye so I'm happy with that. Good night! 

Thursday, March 26, 2015

Nice and Steady.

Dorian has put in a full day's work with improving his breathing. He started off with having the Vaportherm nasal canula with an oxygen mask blowing near the side of his face, to today being able to ditch the nasal canula all together and just breathing with the O2 mask blowing next to his face. 

He was much more alert today and even opened his eyes when Papi came to visit, and opened his eyes a couple of times with me. 

At one point he even asked for Gigi and then said "turkey!" so I offered him food but he only took a few bites. 

I thought I slept really well last night but I fell into a deep sleep next to him in his hospital bed today after lunch. When I woke up it smelled funny and I hadn't realized that his poo oozed  out the side of his leg right next to me. I don't know how long we were both cold but the nurse was really nice and helpful in cleaning him and his bed. Glad the poo didn't flow and get me because I ran out of clean clothes. I didn't realize the bathroom in Dori's room doesn't have any towels so after my shower this morning I had to dry off with paper towels. Outstanding! 

I know he isn't all smiley in these pictures but he is much more alert today and he even bopped his head for a few seconds when I was playing hip hop on my phone next to his ear. 😊 His improvements may seem small but at least it's trending in the right direction. 

I had fun talking to Ben and Alex on the phone last night. They were both very chatty. Ben was telling men all about what papi "surprisingly" made them for breakfast (I guess he assumed he throw them some beef jerky and a pop tart??). I laughed ... Kinda jealous since he woke up early and made them eggs and bacon --- I call that a "weekend breakfast". He's setting the bar too high for when I get back. Ha! 

I'm so thankful that Chris has been able to juggle taking care of Ben, Alex and Luna, plus still go into work. Our friends in our neighborhood have been awesome watching over the boys after school until Chris gets home, and even making us some yummy taco soup today for dinner. I've stayed here with Dori the whole time.

The poor little boy in the room next to Dori has had a rough night after his mom left. As soon as she left I overheard the staff saying he was biting people and I can hear him crying and whimpering. If I was a kid I'd be scared being in a hospital by myself surrounded with machines and people I didn't know. I don't blame the little guy. I'm lucky enough to have Chris and our friends that help me with everything going on back home which allows me to stay with Dori. I mean can you imagine? If Dori is hitting and smacking people while I'm here I can only imagine what he'd be doing if I wasn't (?!). 

When stuff like this happens it so nice to be on the receiving end of unsolicited kindness. I only hope we're just as nice and helpful to people in return. Today a worker at the hospital bought my milk for me in the cafeteria just because. He was part of the sanitation crew on his lunch break.... That is just one of the many reasons I'm thanking God for all the good that has happened today. 

Dorian Day #2

So happy that this morning they have taken Dori off the 24 hour bipap mask (pictured on left) and are trying him on the Vaportherm nasal canula. Since he is a "mouth breather" they have the nasal canula at 7 liters of oxygen and the O2 bag on the side to give him assistance. 

So far he is coughing a lot due to his congestion and maintaining his O2 levels well. They are also spacing out his breathing treatment meds so that is a good sign too.  

Great job buddy!! 

Next we'll try to feed him since  he is acting very "hangry" (hungry + angry). So proud of him! 

Thanks for all your continued prayers! 

Wednesday, March 25, 2015

Dorian Recovering at the Hospital

It's been a topsy turvy past couple of days with Dorian. His inability to hold up his O2 levels on room air went from needing 3 liters of oxygen via nasal canula to needing 5 liters and still not maintaining his O2 levels in a safe zone. His heart rate was faster than normal and his body was just working too hard.  To make things even more challenging his outpatient X-ray in the morning showed he had a partially collapsed lung.   

Under all those factors,  last night we decided (under the pulmonologist recommendation) to take him into the ER. When we arrived it was jam packed. It's NEVER full... Every time we've been there we are either 1) the only patients or 2) there's maybe one other family there. 

We always go to Childrens in Plano because it's the closest and they are able to handle everything we need, plus it's nice that we always are recognized by friendly faces of the nursing and medical staff. This time it looked like the waiting room at the DMV. 
Luckily since Dorian was on a small tank of oxygen, as soon as I saw the huge crowd I went straight up with Dorian and showed him his tank indicator was near empty so they rushed us right back without any waiting. 

They tried a lot of different things to get his O2 levels up while putting an IV in him. Both Marcia and Chris took turns running back to our house to get more breathing equipment since the hospital staff kept telling us maybe our stuff from home would work (Chris was not happy about that). Dori was very opinionated and kept suggesting the staff leave him alone by saying "all done! All done!" 

After placing him on 25 liters of bagged air, he finally calmed down and we were  able to titrate him down to nap on 5-10 liters and maintain his O2 in the upper 90s. Poor little guy was exhausted. By that time nasal swab tests came back and he tested positive for 2 upper respiratory viruses. 

Unfortunately all the ICU beds at Childrens in Plano and ALL the ICU beds at Childrens in Dallas were occupied by other critical patients so our only option was to transfer him by ambulance to Medical City Childrens in Dallas. 
Of course the ambulance staff remembered us ... We've ridden with them twice before. They were very efficient and kept to our wishes for no intubation. He was safely transported with lights, sirens and all (very Dori style ☺️) and was in his hospital room by 2:30AM.  Unfortunately all our medical records are NOT in the Medical City electronic system so we had to start from scratch on medical history etc while they made him comfortable and allowed him to finally sleep on the bipap. 

Some time around 3AM I fell asleep and was able to sleep until 5:30 when the doctor came in. It's always nice to see a familiar face. First words out of his mouth were "I'm sorry" but there's nothing he should feel sorry for. His staff has helped us over the phone prescribing us antibiotics and steroids and giving us guidance this entire time. I'm not upset that Dori has to be in he hospital because we're tapped out with what we can safely do for him at home. 

 Chris came home to spend the night with  Ben and Alex and last night before we left them with Marcia to take Dori to the ER it was very emotional for them. They both started bawling and kissing Dori and asking if they'd ever see him again. Chris reassured them bluntly "we never lie to you. We are always honest with everything about Dori and Wynnie. We'd never tell you bullshit right?" The boys nodded and Chris said "when Wynnie got real sick remember we talked to you guys and told you honestly how sick Wynnie was and how serious it was? Well Dori is not there yet. He is fine and he will be fine, he just has to go to the hospital to get stronger treatment than what we can do at home. We promise." 

The best thing with Ben and Alex is to never sugar coat things because then that would make them question us and what we tell them as parents. So I'm glad Chris took the lead on that and hopefully it helped put them at ease. They slept with their phones in their beds, we told them to call us if they wanted to talk. 

So now Dori has been peacefully sleeping all night and all day at the PICU. He only wakes up when the respiratory therapist comes in to give him chest compression therapy (basically a huge vibrating wand that shakes his chest to help loosen the fluid and mucus). The wand is a running joke in the family because my seester wanted to steal it for her lower back last year. Chris and I were like "riiiiiiggght" 😜ha ha ha!! 

Dori's blood pressure is slightly elevated so we are treating that with meds via his IV. He is continuing antibiotics and steroids to help, and he is still hitting people when they examine him so I know that's a good sign. He only hits when he is "with it". If all goes to plan hopefully Dori could come home by this weekend. We will move forward with placing Dori on hospice care like Wynnie (where a nurse visits us once a week to check up on him and help us navigate between doctors and medical supply companies). I'm thankful he is in good hands at the hospital. I was a total stress ball all day Monday ... So much that I think even Chris was worried about me. So I'm glad I woke up with a better outlook and stronger faith on Tuesday...Especially now that everything is falling into place for Dorian. 

Since Dori has respiratory viruses we ask for no visitors please (!!!). Thank you for all your prayers and support... Dori will literally punch these viruses out to the curb and will be back home jamming out to music in no time! Go Dori Go!! 

Monday, March 23, 2015

Spring Break and Dorian

Spring break was two weeks ago and the boys had a blast! We went with the Mazur family to Vail. It was gorgeous and the weather was sunny. 

I'll post some pics of the trip later since I'm holding Dori as I type in my phone. Ben was bravely snowboarding on blacks and Alex moved up on his skills during the trip too. They did NOT get their Alpine skills from neither Chris nor myself. At all! 😊. 

The week before spring break we were busy putting together the science fair projects and prepping for the awkwardly dreaded puberty film the boys watched at school. We can't get a lot out of them about the film but I'm pretty sure they are permanently scarred from it. Ha! 

Dori came home from school this past Friday not feeling well and it's escalated to fevers, cough and trouble sleeping for him. Thankfully the on-call pulmonary doctor was able to write us a script got an antibiotic Saturday night. It really hasn't kicked in yet. Yesterday his coloring of his complexion was a little "off" so we put him on the pulse ox and I freaked when I saw that his O2 levels  were down in the 40s. He's been on his air concentrator since yesterday afternoon on 3 liters. The good news is that his appetite has picked up. I'll be calling the doctors office again once they open after their lunch hour to see if there is anything they can prescribe for him to help him out without bringing him in.  

Since he doesn't feel well he is letting me hold him all day long. If he was healthy he'd wiggle his way out or hit me until Id let him play on the floor in peace. Although I'm sad he is sick I am enjoying every moment I can sneak in my snuggles with him💜.  He's watching a lot of old favorites and discovering new videos today. He's a very busy little man today so I'm holding all his calls. Ha ha ha