High & Dry

On Sunday night we were worried and a bit dismayed when our night nurse did not show up for her shift. She's been with us since we came home with his trach last April, and she has never missed a shift without calling in ahead of time. I attempted texting and calling, but her phone was no longer in service. I called our nursing agency and they were surprised, too. The after hours employee began calling all contact numbers she had as well. We called the local hospitals worried she had been in a car accident along the way. Finally, the nursing agency got in touch with a family member who gave them her new phone number. She would not answer calls from the agency but eventually did text them back. She told them she put in her two week notice on Wednesday; however, our nursing agency only has record of her talking about possibly putting in her two week notice. Nothing was ever turned in in writing (a company policy). Plus, a 2 week notice means that you work for an additional two weeks. I really cannot explain how hurt we felt! Abandoning us is one thing, but to abandon Drake...that is unforgivable. This was a nurse whom we truly believed loved our son, and clearly we were mistaken. Yes, tears were shed on Sunday night. 

On Monday, I felt anger after learning that after 9 months of working in our home and caring for our son, she decided to quit without giving us any notice at all because Brian told her last week that we really need her to be on time for her shifts. Then I spoke with my wonderful sister-in-law who is full of excellent advice! She informed me that yes, it sucks right now, but we are going to be better off. I definitely needed to hear her advice, because I was feeling overwhelmed...not just because I worked the night shift Saturday and Sunday, but because of the whole situation. We prayed for strength, energy and to find nurses who will be a good fit for our family. 

Mimi to the rescue! My wonderful mom came to stay with us this week to help out so that I can try and get some sleep during the day time while she watches Kennedy and Harper. Last night our little man showed Mimi all of his tricks! She experienced a mucous plug and emergency prep for trach change with Brian and me. Shortly after that he pooped through his diaper, pjs and on Mimi's pants. Oh my goodness, Drake! Good thing Mimi loves you! I'm very proud of Mimi for recognizing that Drake was not moving air correctly even connected to the vent, and she asked us to check on him. 

Today was a good day! Despite the fact that last night was a long night with very little sleep; today we received good news! A nurse who wants to take Nurse Angie's position passed the trach/vent class today and will begin this week! This week she is going to work 3 nights (thank you!) and next week she will begin days. Also, a nurse who has been working with us PRN (as needed) may be coming to work with us full time taking the night position of the nurse who abandoned us. We have been really happy with him and are excited about the possibility of having him join our care team!

A bright note from this weekend was a fun Daddy/Daughter day!!! Brian took Kennedy out to lunch and to the park! She had a blast! She even came home with a Minnie Mouse figurine from Target. They clearly ventured out of the pharmacy where I sent them. 

I realize that this entry is truly my venting over a very frustrating situation that will eventually work itself out in the best possible way, but lack of sleep will do that to anyone. Maybe by next Tuesday when I write again, I will be well rested from several nights of good sleep!  

Big boy in the gait trainer!

Sending birthday messages to Poppy!

1st time in the gait trainer! This is a demo that we get to borrow for a short time. Drake's is on order...hoping to get it in 4-6 months.

So proud to help take bubba into Scottish Rite! Mimi picked her up shortly after we arrived. His hip X-rays look great! While his knee, of course, does not. The doctor is going to continue watching it every 6 months. He doesn't want to do surgery at this age because he would have to do more surgeries as he ages. It isn't hurting him or inhibiting him from doing any standing; therefore, we will just keep a close eye on how it continues to grow. 

He looks so grown up!!!

Taking Harlee for a ride!

Daddy/Daughter date!!!

Fun at the park!

Exploring! 

Wheeee!!!!

A Visit From Yea-Yea!

Over this past weekend, Brian's mom (Yea-Yea) came to visit! We don't get to see her as much as we would like, so having her here for a visit was a wonderful treat! She is fantastic with the kids and she sings the best songs! We really need a Yea-Yea song book so that we can practice in between her visits. 

Drake has continued to work hard and excel through his therapies! I love seeing him initiate the standing position with his physical therapist. She follows his lead...very exciting! I discovered a new tickle spot on his back which made him belly laugh! It is always fun stumbling upon new ways to make him laugh. Tomorrow we will travel to Scottish Rite for his yearly follow-up with his orthopedist. They will X-ray both his right knee and hips. His right knee has continued to be a problem since his extreme illness in the NICU. His hips have to be monitored closely because he is at a high risk for hip dysplasia. I'm anxious to see what the doctor thinks after comparing last years X-rays to this years, and to find out what our next steps will include.

After many, many, many attempts, Kennedy finally and successfully pee-peed in the potty!!!!! This was a pretty exciting day for us around here! Today was a huge step in the right direction! I love how much she enjoys helping out around the house. She is a great helper with unloading the dishwasher, doing laundry, and she sure tries to swiffer and mop. I hope she is still this eager to help with chores when she is a little older. This week, all on her own, she has started holding Drake's hands and dancing with him while he is in his stander. It really is the cutest thing! She also brought him some of her books and turns the pages telling him about the stories. I am thankful that my phone was handy and that I was able to capture these precious moments! 

Dancing with bubba!

Sharing her favorite books!

"All the letters fall down!"

Collecting pine-cones with Yea-yea!

Big boy standing at the table!

He's doing so good!

Assisted walking to mommy!

We LOVE visits from our sweet friend, Grace!

A couch full of cuteness!!! 

Patience and Understanding

I am happy to report that we are all feeling much better! I am extremely happy to be able to hold, snuggle and love on my little boy again...he's pretty happy about it, too! Poor little thing did not understand that I was keeping my distance to help keep him healthy. 

Sweet Drake has been working hard in his therapies and he has adjusted well to having substitute nurses. He is definitely most happy when his regular nurses are here, but he was willing to give some newbies a chance. I am always hesitant of new nurses coming in to work with Drake. I know that I need to work on my trust issues when it come to our little boy. It's hard! I know him and his regular nurses know him. We understand his likes and dislikes. We know his cries and how to make him smile. We understand his quirks and how to trouble shoot if something with him goes awry without panicking. Drake understands so much about his surroundings and what goes on around him. Lisa and I were just talking about this today. He isn't able to fully communicate with us, but we can see glimpses all the time when he smirks, turns his eyes in certain directions, giggles, kicks or smiles. We know he understands! 

I have said before that our little Kennedy has patience beyond her years. At 2.5 years old, she completely understands having to wait if she wants something while we are working with Drake or in the middle of trach care. With a quiet, "ok" she patiently stands back and waits her turn. While we administer her breathing treatments every morning and evening, she plays with a toy, iPad or watches a cartoon. Now that her hair has grown considerably, she even sits patiently allowing Lisa to give her some beautiful braids!  

I received two separate messages this week from other parents of children with special needs thanking us for sharing our journey. Both of these parents are just beginning their new path with their little angels. We are thankful that sharing our story is providing guidance and hope for others. I can not put into words the feelings and emotions that consume you as a parent when you receive the devastating blow of life limiting diagnosis. It is overwhelming to take in and digest. Then, you are ready to move forward and create the best life possible for your child. Searching high and low for resources, information, and others who have walked your path (or a similar one) paving the way in uncharted territory. 

Look at this crawling position! His therapist does not have any hands on him in this picture! 

Love this head control!

Sweet message for Aunt Jamie!

Enjoying the warm fire this year since he is off of oxygen!!!

Her absolute favorite book!

Cute little cook!

Getting braids!

Adorable!!! Such a big girl now!

Fun at Harper's house!

Our pant-less little Nancy Drew! She loves to inspect everything around the house with Daddy's flashlight. 

Working so hard that he fell asleep in his stander. 

Kennedy & Harper having some fun with a tunnel! 

Tunnel fun with Daddy!

Silly girl!!!

Mamas Don't Get Sick Days!

I saw a commercial recently, I think it was for NyQuil, where a dad tells a little boy in a crib that he's going to have to take a sick day tomorrow...then it says...dads don't take sick days! Oh, so true! Moms and Dads don't get to take sick days; although, I am thankful that Brian was here to help (make me rest) and that Drake had his nurses. Brian had the fun task of taking care of both Kennedy and me over the weekend. We have what I am going to call "the crud." Apparently it is going around and causes body aches, congestion, cough...yuck, yuck, yuck! 

Saturday night we were without a night nurse; therefore, Brian and I were busy taking care of both Drake and Kennedy. We have increased our hand washing and sanitizing even more than usual. Our hands are tried out and cracked, but you won't find a germ on them! Kennedy is doing breathing treatments 3 times each day. Drake is doing breathing treatments every 3hrs and our machine has not been working properly, which causes his treatments to last for at least an hour. He slept really well Saturday night, and he even slept through his treatments! Brian and I had planned to take turns with his treatments, but when he got up for the 3am treatment, I already had it going. I was sleeping on the couch and since I was already awake (it's hard to sleep on the couch with all of the machine noises) I went ahead and started his treatment. I sent Brian back to bed even though he did offer to switch places with me. Our day nurse altered her shift and came in at 6am! This allowed me to go get a couple of hours of sleep in before Kennedy woke up. 

Then came Monday...I awoke to a text from Nurse Lisa at 4:30 letting me know that she had called in sick! Yes, she has "the crud," too. I went back to sleep and got a call at 6am from the agency letting me know about Lisa. Thankfully our night nurse, Cindy, worked a 16hr shift and stayed with us until 12:30pm! We had a fill-in nurse who came out and worked the rest of the day and also worked today's shift. He drove here from Sulfur Springs and he has been wonderful! I hope we are able to have him again! 

Drake has been weaned off of his oxygen support! He did an amazing job today with his physical therapist! I took some fun pictures of him standing!!! Next time I will get a video. Despite all of this wonderful news, he has been battling diarrhea since yesterday! I can just tell that his tummy hurts and it breaks my heart. His secretions have thickened slightly and are white rather than clear. His cheeks are flush and his temperature is slightly elevated (ranging 98.1-98.4 rather than his usual 97.5). I know this doesn't mean it is cause for alarm just yet, but we are monitoring him closely! We are scheduled for a trip to Scottish Rite tomorrow for hip & knee X-rays before we meet with the Orthopedist. I hope we are still able to go, but we will make that decision in the morning based on how he is doing. Looks like our entire family is in need of some prayers for healing right now. I know Drake is in good hands with Nurse Cindy so I am going to get some needed rest. 

****warning-since I have not been feeling well, I have not taken many pictures.****

Please ignore the messy hair, buddha belly & runny nose...just look how amazing he is doing with standing!!!

So proud!

Snuggled in mommy & daddy's bed!

Before she started feeling yucky...she put on Daddy's boots when I told her to put her shoes on!