A day in the life of a special needs parent

I am writing this post mostly to vent but also to give you a glimpse into our visit at the hospital. 

We recently did a routine EEG at Denver Children's hospital. This was something we requested to look for changes in seizure activity and to have new baseline data. We have done this at least 10 times now and I can honestly say this overnight visit in the hospital was the worst. I pray Piper never gets sick because I never want to be admitted here again. 

Just a few of the conversations I had during our stay....

Me (7:30am at the hospital registration): Good morning, we are here to check in for our EEG. 

Receptionist: Great! Thanks for getting here on time. 

(5 min check in)

Receptionist: If you will just have a seat over there it should be about an hour before we will have a room ready. 

Me: So, why did we get here this early? We could have been 45 min late and still had plenty of time?

Receptionist: Yes

Physicians assistant (in the middle of Piper getting leads put on her head and screaming at the top of her lungs) : I would like to review Piper's medical history with you. 

Me: Do you have her medical records from TN that contain her entire history? 

P.A.: Yes, I do, but I would like to hear them from your mouth.

Me: Alright then, but you are going to have to speak a little louder. 

Me: I would like to order lunch for my daughter. She is on a gluten free low sugar diet, so I need green beans, pears and a sweet potato. 

Lunch lady: Oh,I'm sorry those items are too dangerous for her to eat, they aren't classified as soft. The skin on the sweet potato could be a choking hazard. 

Me: I think you can remove the skin. I've actually done it before. 

Lunch lady: Ok, we can TRY. I will have to send other items in place of the two other choices that Piper can handle. 

Here is what she sent 

Me to our night RN: Piper has startle seizures so if we could avoid any interruptions during the time she is sleeping that would be great. She is not sick so there is no need to weigh diapers, check vitals as often etc. How about I buzz you if she has a seizure and otherwise don't interrupt her sleeping. 

RN: ok, sounds good. 

(20 min later after Piper has fallen asleep)

RN: Just checking in on you, I need to know what Piper has eaten today. (Wakes Piper up, triggers seizure)

Me: speechless 

Night RN: If Piper has a seizure lasting over 5 minutes it's our protocol to give rescue medicine. 

me: We don't use that protocol at home and do not feel comfortable giving her rescue meds. Every cluster she has lasts over 5 minutes. According to your protocol she would have been given rescue meds 4 times since we have been here. Did you speak with the day nurse before she left?

RN: Yes, I did and she told me the exact same thing you did. 

Me: So what's the problem?

RN: It's our protocol to administer rescue meds after 5 min. 

me: Looks Like the day nurse and Neurologist didn't follow protocol. 

RN: Oh, I guess you are right. 

Night RN: Piper gets her medicine at 9pm. You are welcome to give her CBD oil because we do not supply that but we can't let you give her fish oil or melatonin supplements. 

me: What? Why?

RN: We have to use our own meds but do not have liquid fish oil.

Me: You just said I can give CBD oil since you don't have it on hand. It's the same situation. Why can't I give her melatonin?

RN: She has to take the pill provided by the hospital. 

Me: She can't swallow a pill. We have to use our powder. Please send your supervisor in so I can talk to them about this situation. 

(30 min later)

RN: You are welcome to give her anything you want. 

Let me add that after all of this she still brought one of Piper's meds in at 9pm. Piper gets 2ml of this med. I threw it in trash and made my own. The wrong dose, seriously??!

Night Nurse: If Piper has a seizure tonight please push the red marker button. 

Me: We have been here for 12 hours and I have already pushed this button many times. She may have seizures I don't hear if I'm sleeping so will the people monitoring the video catch them?

Nurse: You are planning on sleeping?

Day nurse: You have to be in the room with Piper at all times.

Me: No problem

Nurse: That means all day and night, you can't go home to sleep. 

Me: What?? This isn't where I drop my child off for overnight day care??!! Crap, I was looking forward to a relaxing night with my husband. (Ok, I only thought this one but sure did want to say it) 

(After all my attempts to prevent interruptions and startle seizures during the night, the nurse came in at 4am to take her temperature. She was startled, woke up and had a cluster. She was unable to go back to sleep and screamed for two hours. The only thing that calmed her down was getting in the bed with her. Nurse comes in at 6am while I am snuggled up with her in the bed) 

Nurse: What's wrong with Piper?

Me: You woke her up at 4, triggered a seizure and she couldn't get back to sleep.

Nurse: Oh, poor thing! 

Me:You couldn't hear the screaming?

Nurse: I sure did, poor baby! By the way, you can't get in he bed with her, it's protocol. 

Me: I thought we agreed our protocol was no interruptions. Looks like we both are in trouble. 

Me to nurse: Two of Piper's leads have fallen off and I am afraid it will affect the results of the study. 

Nurse: I don't think they are that important. 

Me: You don't think the things that are measuring seizure activity are important to the seizure study we are doing??

Nurse: I'll try to find someone to fix it but no promises. 

Me: I think it's time for use to go home. 

 

Where does the time go?

Like we always say, time is flying and we wish we could slow things down! Evan will be three months old soon and is learning and changing every day.  We feel like we are new parents for the first time because our experience so far is so much different than with Piper. He is smiling, laughing, cooing, babbling, rolling and loves to stand! He may very well be the happiest baby I have ever been around. We feel so blessed that he is so mild mannered and such a joy to be around. Like I have mentioned before it is a little bittersweet to see him progress so quickly and he has already mastered things we have been working on with Piper for 2 years. We always try to avoid comparing Piper to other children and was easy to do when it was just her.  Watching how he learns does help me think of new ways to work with Piper so I take it as a great learning experience!
 

Many people have asked how we are holding up with two young children. Honestly, (knock on wood) it hasn't been that much harder. I know things will get a little harder when he is mobile but for now things are really good. Once I was fully recovered and back to my busy self it only took a few days to get used to taking care of both of them. Piper is still very high maintenance but Evan is such a good baby so it's not as hard as I expected. Piper hasn't paid much attention to her brother but we noticed yesterday that she becomes more whiny and needy when she hears him or knows he is in the room. Although we don't want her to be upset we are proud of her for knowing something is different! She understands more than we give her credit for.

Piper has experienced ups and downs in the past few months. She was doing really well on CBD oil until our last batch. We changed her dose and saw some bad seizures return. Since her medicine is plant based, every batch is a little different. The ratio for the last batch was different and we think that may be the cause of the changes in seizure activity. We are making changes and already seeing better control. We will be doing an overnight EEG on Monday to see if she has anything new going on.

The past few months have taught us more that we expected. Since Piper's diagnosis we have learned to handle stress, disappointment and heartache the best way we can. It seems like her condition has affected everyone around us and most people just are not able to handle the stress the way we do. It has taught Justin and I to continue to be positive and love each other even more. We do not let negativity weigh us down and chose to surround ourselves with positive situations. We thank the people who can provide that for us and our children. Even with the struggles we are so blessed and extremely happy. We are not saying it's easy but we have an amazing marriage and two beautiful children, how could we not be happy!

Moving to Colorado did something I expected, brought Justin and I even closer in our relationship. We really just rely on each other and trust each other so much. It was scary and a huge leap of faith but we are here and I know that is for a reason. We have found a church we really like and are hoping to get more involved soon. Its nice to get back to a normal routine and to start meeting people again. We are also very excited because we found a house we love and will be closing on it May 1! Living in an two bedroom apartment with two small children has been more than a challenge, especially when Justin works from home. I have been very creative finding places for the kids to nap (hallway, bathroom, closet!) I am lucky Evan is a "go with the flow" type personality because he really doesn't have a choice. I guess being born in Colorado has helped with his laid back personality.  

We have been looking for months for a house that is conducive to Piper's needs. It was hard to find a ranch style house but we finally did. We will have to make modifications like ramps and other things as she gets bigger but we are so happy we won't have to worry about carrying her up stairs. We are so excited to have more space and finally have seperate rooms for the kids! Right now Justin sleeps in the master bedroom with Piper and I sleep in the nursery/office with Evan. It's going to be amazing to sleep in the same room with my husband again!!! It's funny how kids change everything...


We thank you all for the continued support and love!