Waiting for Discharge

Today is the day! We are waiting for discharge and hope to be home before lunch. We will meet home health there to get everything set up. Ayden will have his PICC line for the next couple of weeks and continue his IV meds. Hopefully, he will heal even faster at home. I know he will be more comfortable and he can see his tree and lights. I was able to go home last night with Nessa Bean while Daddy took his turn to stay the night. We stopped at Walmart and got everything for meals. It will be a Christmas from the Walmart frozen food section, but it has to beat hospital food! 😁 And maybe we can find time for some cookie and chocolate making later today or tomorrow. The key is we will be home together for Christmas. Thank you for the prayers over this past week+. We appreciate all the kind thoughts and gestures. We hope all of you have a Very Merry Christmas!

The Hoffmans

PS- We found the green tractor(w/lights and sounds) 😁 Sis is wrapping it up today. 

Closer to Home

Although the x-ray yesterday morning still did not show improvement they moved Bub out of PICU. His care does not require the PICU anymore and he was happy about the change. He still has his chest tubes, but just like the past few days there is very little to no drainage. We have also been off of oxygen for almost a full day! Our pediatrician wants to get Bub home ASAP. There is a reason for that, Ayden's history tells us that when Ayden stays in the hospital over a week he actually starts to deteriorate sometimes with no explanation at all, it is just him. We were admitted last Saturday, so we hit the over one week mark last night. We have a PICC line so our doctor knows once he has his chest tubes out he needs to be pushed home. He will rest better, eat better, and overall be happier at home. We have handled IVs at home a few times before so that does not concern us. I went home yesterday for a bit to clean, sweep, and feel ready for his arrival. Our hope for today, chest tubes out, more improvement, and talk of an actual discharge date versus "before Christmas". As long as he is having a good day, Gma is coming to sit with him for a bit so Justin and I can finish our Christmas shopping(something we planned to do last Sat.). We thought we had Bub taken care of, but when nurses and other staff ask him about Christmas he tells them he is getting a green tractor?!? So we will be tractor shopping today for sure, he never mentioned this before. 🤷 Yes, he may be spoiled, and that is ok.

So prayers first for all the little ones that are flooding the PICU and peds floor. Prayers for families as they learn to navigate a hospital stay for the first time and at the holidays to boot. Then, we ask for prayers for Ayden to continue to improve. He needs to eat more, be up more, and not go backwards. We want to get the chest tubes out so we ask for comfort through that process. Our goal is still home by Christmas, which may not be on the 25th for our family. It may be celebrated as soon as we get home, he is so afraid he missed it already. Thank you for all the kind notes, cards, and messages. They have all been appreciated. 

Thank you,

 The Hoffmans

Waiting for More Improvements

I have had some ask for an update so this is what I know. Positive notes were that he sat in a chair for a bit twice and took a quick walk. He also asked about home and stated several times that he wanted to go. This is good because he showed an interest in something and talked a bit. Some elves delivered fun notes and yummy treats last night. I showed him the new ball and he reached for it and held it. I asked him what its name was (he names every ball he owns)..."volleyball" not the most creative, but it was accurate so it is what it is. He has slept a lot, and still has pain, but managed to eat almost half of a PBJ sandwich and one whole Chips Ahoy cookie at lunch time; After not eating for a whole week, we will take it! Speaking of which he has actually lost two rolls on his tummy, for real! lol! Also, having an upset tummy led to the disappearance of George for a bit, but fortunately he requested Lucy from home the day before and she has been here to help out.
 I wish I could tell you his chest x-ray looked better today and they took out his chest tubes, but it wasn't. So specifically, we need prayers for a good night of healing, our hope is his activity today helped clear out the lung so we can start the transition from suction to gravity, and then to removal of the tubes. We would like to see him breathing well enough not to require the oxygen. We keep trying, but it tends to fail when he is sleeping. Also, if we could eat like we did at lunch today some that would be helpful too. Those are our current obstacles to move past.

Let's end with a happy Christmas memory... Nessa has has struggled with wanting to be with us this week. She has been at the hospital later than she should be a few nights and yet made sure to get herself up and to the bus even on a few cold mornings. Luckily, she had something to look forward to at the end of the week. Mike volunteered her at the last horseman meeting to drive Santa for the elementary school. She has never loved something as much as she loves drafts and getting to do her thing for such an awesome event made her feel so proud. She told me tonight, "Mom everyone knew I was driving." So I had to admit I asked "everyone" to take pictures since I had to miss it, and they did. This evening, off and on I have received pictures from friends. It has really made my evening, Thanks!

UPDATE: :) So I started this about 9 PM...when Bubba was practicing his roll as the marshmallow man for the next Ghostbusters movie - Fortunately, the issue was addressed and although it has consumed the last few hours, I am happy to report his swelling is going down. YAY! :) Maybe this is the start to a great Saturday. :)

Thank you to everyone who helped out, has sent a note, and most importantly prayed.
We will make it home for Christmas! - The Hoffmans

Home for Christmas

Yes. It has been two and a half years since the last post... Things have been amazing! So many milestones met, and yet we have been so busy that I haven't taken the time to celebrate them with a post. Seriously, everything has been looking up. This blog, just like Ayden's CarePage from over a decade ago(yes, I did say a decade), was created to keep people informed. It alleviates the stress of individual messages to the masses. It also allows people who don't know us well or are just curious to learn about our son. Truth is I still do not have nice short answers to questions like "What does he have?" or "What is wrong with him?" My answer is always messy and longer than anyone really wants to hear.

So fast forward to tonight. I am sitting in PICU with Ayden. Our goal - Make it home by Christmas! We haven't shared much, but the word is out and we honestly need some prayer warriors, and the more the merrier.
Last Friday, Ayden woke up screaming in pain. We took him to the ER where he sat for a few hours and went home with the diagnosis of constipation. Yep! There are some of you that will laugh about the old family story that goes with that one. Anyways, despite leaving the ER as uncomfortable and screaming as when we arrived, we took him home. At the time an elevated white blood count was noted, but the doctor said it was not worth the time to chase down the source of that.
 Nothing changed, Ayden cried "No more large" and tried to sleep in between screaming.
 On Saturday, we returned to the ER and they admitted him for observation due to his chest x-ray. We have been at Parkview every since. Fortunately, our team is in charge and they have been looking at everything. He just is not himself at all, and truly is in pain. On Monday, it was decided that his left lung was too full not to do more than antibiotics. Tonight he had a VATS procedure to drain his lung and get a good look at what was inside. Samples were taken for cultures and further examination.
For the next few days, we could use some prayers for answers and strength. Ayden will be in a lot of pain for a bit, but our hope is to talk discharge within 3-5 days. They placed a new PICC line yesterday, so we can hopefully just come home with IV meds like we have done before. We know Bubba heals best at home, our team knows that too.
My hope is our next post is of an amazing little guy opening his gifts on Christmas morning.

We are thankful for all the thoughts and prayers,
The Hoffmans