Tuesday, March 20, 2012

Days 140-144

Day 140: Friday, March 16, 2012- Happy 20 week birthday, Walker!Adjusted age: 5 weeks!

Horrible weekly birthday for Walker. We could see he was having a very hard time breathing and test were run. He has bacterial meningitis and we are being told that they caught it fast. He had a lumbar puncture that is a spinal tab WITHOUT deadening the spot and without pain medicine. Only thing the boy had was a little sucrose water on his pacifier.  I'm writing this a day late so forgive but I've forgotten a lot. I'm heartbroken and so sad for my baby.

Funny thing too. When they made rounds they decided to remove Walker's name from the Level 2 list until they get this thing under control. We got the phone call within a couple of minutes after they said this that a bed was ready for Walker.

So for parents with babies in the NICU, we are quite familiar with the saying "the NICU rollercoaster". I was really beginning to think we were at the end of our ride. I haven't been sleeping because I've been so worried about my baby. My body aches with pain of sadness and defeat. I've watched two babies celebrate their first birthdays in the NICU and I've watched countless babies leave before us. We continually hear how strong we are and how people couldn't do what we do. He is my child. He is my heart, soul, my whole life. There is nothing I wouldn't do for him. But this infection has brought me to my breaking point. 

Day 141: Saturday, March 17, 2012- Walker's respiratory rate is better today. They discussed taking him off of CPAP and I think that's too fast and if he needs the extra pressure, give it to him! His body is fighting so hard and that shows in how much he is sleeping and also his platelet and blood count.

So, Walker has gram negative rods bacteria growing inside of him. It's a pretty serious bacteria that has a 50 % death rate if not treated fast and effectively. We found out today that he has serratia again and also E-coli in his urine. His spinal fluid did not grow again which is great news. Walker was taken off one of three of his antibiotics.

Today, I was complete mess. I taught myself early in life that there's no reason to cry. Crying gets you nowhere and just makes you feel like crap. That was not the case today. Immediately approaching Walker's bedside I broke down crying. It's so hard hearing other families so happy about their neonate and full of energy. Since we've been in the NICU so long we've accumulated a lot of friends. They always come check up on Walker and talk with us. Today was like no other day and I couldn't take it. A little birdie, who LOVES Walker wanted to do something for us but didn't know what. Currently Walker's spot is right on the corner near the milk fridge and the ice machine. It's pretty loud. A PCA always makes sure that Walker has a screen for privacy. They came and put a message in my ear about a private room opening up and that I should talk with the charge nurse and ask about moving. My reply, choking back tears, "I don't want to talk to anyone right ". She told me she understood and would be my advocate. So Walker is currently residing in his private room with a window that faces the Children's Garden. I'm so thankful for those ladies and feel overwhelmed with love from them. Walker too. So thank you to L&D and no, I'm not talking about Labor & Delivery.

Day 142: Sunday, March 18, 2012- SO clearly my episode of tears yesterday has made quite a stir around the NICU. Today while we were there, we were visited by fellows and attendees that used to work with Walker. There is something about Walker that grabs the heart strings of strangers and they always check up on him. I guess I have been so strong and put on such a good front that the thought of me crying my eyes out yesterday was a lot for these people. I actually felt embarrassed but also cared for.

Walker is showing signs of improvement. He's alert and awake and can't be without his paci! We got to hold our sweet boy today and that by itself was enough to put us in a better mood. He's a hungry boy, but feeds will might start tomorrow. The blood cultures have not grown which is fantastic news.

We are so glad that Walker is slowly getting back to being himself, but with every new or different movement I'm thinking about the long term effects of meningitis. Dr. Google is not my friend and I already feel defeated and we don't even know anything. Walker will have a brain scan and repeated hearing test in 21 days. His ophthalmologist is already scheduled for Wednesday for his two week check-up. I'm praying hard that everything will be okay for Walker. I can't stand that my boy was chosen for this rocky of a start for the beginning of his life. 

Day 143: Monday. March 19, 2012- Walker, oh sweet Walker. Where have you gone? You've succumbed to this angry, hungry baby. They are taking Walker's feeds really slowly and Walker's a hungry little man.

Hated his nurse today. She had the nerve to say, "he cries a lot". Um, isn't he a baby? And an almost 5 month baby at that. He doesn't like sleeping or being in his crib anymore. Rude ass.

ID team came by and said that he will be treated for 21 days and then a brain scan will be performed. Depending on what that shows, like an abscess, he'll need medication longer which would mean a longer stay. Time will tell. His hearing test will also be performed at a later day. Walker is an extraordinary baby, so much so that his meningitis caused by serratia has very few studies performed because it is so rare.

So the infection was living in his gut. Having a foreign object, such as a PICC line, is like a moth to a flame. Bacteria will head straight to the line and begin infesting. That is exactly what happened. Walker's had 3 or 4 PICC lines, 2 have been the cause of the infections. So the thought of putting another one in his arm, terrifies me. Today we had to discuss putting another one in. Either way, until Walker is off of TPN, he has to have one. Ugh. I'm not happy and stressed out.

The positive outlook we are taking from this is that he has 3 weeks to get to full feeds, off TPN and time to work on his suck, swallow, breathe with a therapist three times a week.

I do have to say that I couldn't get through the days without my husband. He is nowhere near the perfect man but he's there for me when I need him.

Day 144: Tuesday, March 20, 2012- Walker's feeds were increased today. He is doing well with his food. He was supposed to get another PICC line but they rescheduled for tomorrow. They want 72 hours and 3 negatives from the culture before placing another one in. Nurse Courtney, knowing how worrisome I am about another one, brought up the idea of putting something else in. The team doesn't think that Walker will need TPN for very much longer so they just want to place a PICC for the time being.

Today, Walker just wanted his Momma to hold him close and nothing else. Leaving was very hard. We had to place him in the swing and then sneak out. Physical therapy has started working with him again.

The one thing that is worrying me the most right now is Walker's eyes. When he finally started waking up from the sickness, his eyes started doing this thing were they move side to side pretty fast. Sometimes even up and down. Side to side is normal but up and down isn't. The team knows, as well as the ID team, and they both don't think that is a side effect from anything that has taken place. Tomorrow is his two week eye appointment and I hope his ophthalmologist can tell us something. I do know that it has improved so that is a plus.
Grabbing onto Lambie

"Don't think about taking the Lamb away!"

Don't worry, it was only an under the armpit thermometer check.

Momma, Walker and Nurse Courtney
 And finally I'm leaving you with this, you've heard me talk about Nurse Courtney numerous times. She's amazing. The connection between her and Walker was instant. You think all nurses would be incredible but they become numb to the everyday situations and basically, they aren't. Courtney is fabulous and what a great way to celebrate her is by nominating her for our local newspaper Salute to Nurses 2011. If you feel compelled to join and celebrate Walker's fabulous nurse, the link is here: Salute to Nurses 2011.

I would also like to welcome the viewers all the way around the world! Welcome!

1 comment:

Debbie Walborn-Parducho said...

I've been following Walker's journey (I'm a preemie mom from The Bump) and reading this tonight just broke my heart. He's had to endure so much already. He's been so strong and such a little fighter ... it literally brings me to tears to think of him battling such a serious infection. I will be keeping you, your husband, and Walker in my thoughts and sending you lots of love and healing thoughts. I look forward to reading about him kicking this latest obstacle down and showing everyone again what a special little boy he is.