Wednesday, May 2, 2012


Childrens live at Children's Hospital. Many live on the 9th floor. Some are kiddos where the parents never returned. Some kiddos are waiting for nursing care in their homes. They are too sick to simply be home with their parents. There are probably many other reasons as well.

This time around, we stayed next to one of those kiddos. The little baby had never left Children's Hospital. His first year of life was spent in a crib at Children's Hospital. That is the only world this child knows.

A few weeks ago, I discussed this topic with two of my dear friends. My conclusion was that there are many things that have to go wrong before you actually end up in a situation where your child is living at Children's Hospital.

And was I wrong. Last Thursday, I realized we were that family. We were that family where I honestly had no clue when my Jacob was going to leave Children's Hospital. In one phone conversation, our nursing was dropped by an agency who has cared for him for 2,5 years. An agency who has never showed any signs of wanting to stop care for my son. An agency who simply stopped caring for their patient, and instead decided that liabilities and covering their backs were more important. And in the middle of all BS, was my son who does need his nurses. A kiddo who only should stay at Children's Hospital when he is sick and needs the extra care. A kiddo with low immune system who always will catch an infection from simply staying in the hospital. A kiddo who can't fight bacteria and germs.

I was devastated. I was angry. I was frustrated. I was actually shocked that we ended up in a situation where it wasn't clear if the hospital was comfortable to let Jacob go home without nursing care. They also have their liabilities. Children's Hospital would be Jacob's home until a nursing agency would be ready to take him home. It could take weeks, maybe months.

We were that family, and it truly hurt. It was time to put on my warrior hat. I might be a very diplomatic person baseline, but if you do go over the edge with me, there is not much that can stop me. We had a few things going for us. Our nurses never even once said that they would not come along with Jacob. In reality, that is so much more important than the agency. Over the weekend, we brainstormed what would be the best solution for all of us, and we agreed on the agency that would be our first option.

On Monday morning, I called the agency first thing. We're fortunate that the supervisor already knew both of our nurses, and she felt she knew Jacob, since she had heard about my brave little fighter for years. She was very interested in taking our case. Bingo!!! She was so interested, so she actually decided to come to Children's Hospital and evaluate Jacob, talk to case management, and give me my HR paperwork to continue to be Jacob's CNA. When the case manager came with a little sticky note with an agency I could call, I could see her eyes becoming surprised that I had already identified an agency who was willing to take Jacob on! I was afraid that I would have stepped on her toes, but she understood that this was about Jacob, not about who had gotten an agency on board.

We're working frantically with the new agency this week to get all hiring and training done. I have been writing tests for them into the night, I have been driving thru town to be interviewed, I have several hours more of testing and HR training with them that needs to be done. My nurses are doing the same thing. In the middle of being very busy, it is honestly amazing that we are able to replace a nursing agency in 6 (!) days. I heard it would take weeks or months. And it looks like we're all getting better paid and getting better benefits! Maybe this was supposed to happen? I would just have picked another week than when my son was in the hospital.

Hospitals do have liabilities too. We were told that we couldn't go home until nursing was identified. I put my negotiation skills to the test with the Chief Resident and Dr. E., and it worked! It is true that Joakim and I will have to be with Jacob day and night, but it is so much easier to do when we're all under the same roof. We're also doing a really funky IV antibiotics at home that is not made for home use. It will take us 2-3 hours each day to administer this, but we're willing to do that, if it means that we're home.

The proof that the warrior mom is needed was when we got home tonight. Jacob couldn't stop smiling when he finally got his bath tonight. Sarah and Jacob were then sitting in his bed watching Disney Channel on the IPad as Sarah was giving Jacob the antibiotics Tobi. I knew we had done the right thing.

This learned me a really good lesson. Any of us could become that family, and it can happen in a split second. Just like that. What I also learned is that you are on a job interview every day. Due to us always making sure that we have great relationships with everyone at Children's, we were able to be the exception that could go home. I also feel that due to our nurses being top notch and being a family known for being easy to work with, we got a new agency very quickly. We were already known in the home health industry.

And our little fighter Jacob, we brought him home once again. He is still on IV antibiotics for the rest of the week. His cast is off, but I can see that it will take us some time to get used to doing the daily care for Jacob with us now knowing that he has such a high risk of fractures. Joakim and I have to team up throughout the day. And as I have been the warrior mom, Joakim has once again balanced it out with his calmness and logic thinking. I think that calls for a pretty good team.

Much love,



  1. Maria, Just catching up on Jacob’s hospitalization. Oh my, you guys have been through a lot!! And, as usual you have defied the odds and come out victorious with the best nursing/care for Jacob. Hurray for you and Joakim!! Parents of the year!!! Praying right now that tomorrow will be a great day for Jacob and all of his caregivers while giving thanks and praise that he is home again with his family. God Bless you all. Love, Linda

    1. Yes, we had quite the run this time, but very happy to be home once again!

  2. You guys are amazing!!! YAY for being home! I am so happy for you guys and it is unbelievable what you all go through on a daily basis!
    And really, there are kiddos whose parents never came back for them? Not judging, just saying that breaks my heart! My heart also goes out to all those who never in their lives left the hospital.
    I wish you guys a great start at home!!! And all the health and happy thought you need!
    Much love from us girls.

    1. Hi Nadia,
      Yes, we're in a way the lucky ones who are able to leave. Thank you, thank you for the yummy salad and bread! We had it with our dinner tonight. Jacob can't wait to see Selina again!

  3. I am so glad you are home! You are a family of fighters! You are amazing!

    1. Hi Rebecca,
      Thank you so much! We're very happy to be back home again, and it is worth the fight!