Happy Halloween and finally an update on Payten!

First of all we would like to say, Happy Halloween to all you Witches, Ghouls and Goblins out there! We hope you had a fun and safe Halloween. As you can tell by the above picture, we had a festive and fun Halloween ourselves. Payten was a skeleton, Zachary was Anakin from Star Wars, Makenna was a sugar plum fairy, and Emmett was a Jake from Jake and the Neverland Pirates!

These past few days have been long and tedious, with very little reprieve. I feel like I am constantly in the Go, Go, Go mode and when I get home, which is between 10/11, all I want to do is crash, so I apologize for not updating as often as everyone wants. I do my best to update those who care to know, but please understand I am one person and I get tired, so there might be days, such as yesterday, where I just do not have the time or energy to update this blog. Life happens, so please bear with me!

Payten is still struggling with her breathing quite a bit and though we have done things here and there, we still have no definitive answers and our game plan is still uncertain in many ways. Yesterday, shortly after I got to the hospital, the Neurologists was there to discuss their ideas and plans for Payten. As we were talking, I expressed my concerns and thoughts, which one being that I questioned if her breathing issues were maybe caused by seizures that we were not aware of and she said that was a good question, one in which we should rule out. So, later that afternoon, Payten had a 16 hour EEG,

Bless her heart, this poor thing has a hard time staying still and therefore this EEG was torture for her. The Neurologist and I were worried that it would not even work, considering Payten's movement disorder and how difficult it is to keep her contained, fortunately, the odds were in our favor and Payten cooperated and the EEG went without a hitch. The results of the EEG did show seizure activity throughout the night, but the Neurologist said that it appeared that it did not seem to be during the times where she dipped in oxygen or went appnic, however she said that she would go back and read it thoroughly to make absolute sure that, that is the case. As for right now, her breathing complications while sleeping do not appear to be caused by seizures, which is both good and bad. It is good, because the seizures are not causing it, but it is bad, because now we are back to square one in questioning why these breathing issues are occurring. For now the plan on Neuro's end, is to stop her Onfi seizure medication and see if her respiratory complications improve. If there is improvement, then we will completely take her off that medication and discuss other options, but if her breathing remains the same, then we will put her back on the Onfi and hand it completely over to ENT/Pulmonology and let them figure out what the cause is.

Also, Payten had a dye study on the Permanent Port yesterday, which showed that there is a blood clot/fiber tissue, that is blocking the opening of the catheter. This confirms the fact that her Port is easy to flush, yet hard to get blood return on. The Doctors did try a medication called, TPA, that they infused into her Port over several hours and still it was unsuccessful at dissolving the clot, so late last night they infused it again over several hours and still nothing happened! Therefore our next step is to replace it, but we will not know if that will definitely be the plan, until we talk with the Surgeon, which will hopefully be tomorrow sometime. Payten is on the OR schedule Tuesday, for Port replacement, but depending on how her breathing is and what we decide after talking with all of her doctors, it may or may not happen. You see, Payten has a very complicated airway and the less we have to intubate her the better, therefore that is why the hesitancy on surgery, but if the Port is no longer functioning, at some point it will have to come out, for it runs a high risks of blood clots and infections, that is why we will be heavily weighing out our options. I will definitely let you know when and what we decide soon.

As for tomorrow, the game plan is, for Dr. Mancuso (ENT) and Dr. Panesar ( Pulmonology) to come in and do a bedside bronchoscopy. When? That is the million dollar question, we do not have a time, because the Doctors have not decided on a time, all we know is that it will be happening sometime tomorrow. This procedure will show the Doctors if and where the problem or problems in Payten airway reside and what they are going to do about it, if there is indeed a problem. For now, Payten is still on the OR schedule for Monday, however she will not be having her stoma closed, rather her name remains on the schedule just in case there is something they find in the bronchoscopy that needs surgery, they will be able to do it on Monday. Who knows, she might still get her stoma closed Monday, but until the Doctors know exactly what is happening in that airway of hers, it is a no go. Like I said, we have some answers and we have somewhat of a game plan, but it is still unknown exactly what all is going to happen and how long we will remain here in the hospital. I just pray that the madness ends soon, because I am in desperate need of a Zanix from all of this crazy stress!

All in all this hospitalization has been a very productive stay, getting a lot of things addressed and accomplished, however these things take time and therefore we are having to brush up on our patience skills. Today, was a kick back, chill kind of day. No procedures or test were done and no doctors, except for Neurology came in. It was kind of nice! Payten even got to get out of bed and take a stroll around the ICU unit,

I was able to capture this sweet moment while strolling the unit! This is Payten petting the therapy doggies, which were dressed as angry birds, it was totally cute and Payten loved every minute of it. Then later, she had some folks drop off a bag of Halloween goodies and she got to spend some time with her brothers and sister. Unfortunately, I was unable to capture a group photo of all of them, but I did capture this photo of Makenna, which is to die for,

 

this is of Makenna sitting in the window seal of Payten's room and it looks as though she is an angel watching over Payten, while in the hospital. It truly melted my heart and I had to capture the moment. Payten loves when they come and visit her, as do they.

This above picture is not of today, but rather it was taken yesterday, but I wanted to share it, for it shows Payten receiving a card from her sister Makenna. This just goes to show you all, how much Payten's siblings care for her and love to visit her in the hospital. These are the moments, where I am reminded that I have great kids! I am one lucky Momma, that is for sure!

Before the kids and I left the hospital to meet up with Aunt Laura and Uncle Mike for trick or treating, we stopped by another hospital room in the ICU, to visit one of Payten's/our friends, her name is Alyssa and we adore her, (especially Makenna!)

It was a great way to end our night at the hospital and I know it made Alyssa's night that much more special! These are the moments that I know my kids are learning what it means to care for another person and show love and compassion and if it were not for Payten, we would have never had these opportunities handed to us! What lucky people we are to know Payten and Alyssa and have them in our lives.

Though this has been a long and hard hospitalization, I know I am blessed and that I have a beautiful life that I am beyond grateful for. We are so lucky to have modern medicine that helps us to find ways of knowing and helping our sweet Payter Tater. Even though being in the hospital sucks, I am grateful we are here getting much needed things addressed. Thank you all for your love and support and we hope you have a good night.