What A Day

Whew. That was exhausting.

Today was non-stop emotional and physical drain from early morning till later tonight. We started the day off with a few meetings with Doctors updating us on Liam and what they were seeing. In discussions yesterday with the Doctors, we decided that we would extubate Liam this afternoon, so we continued those discussions this morning. Saba, Savta, Nana, and Papa all came to visit Liam this morning, which took us to near lunchtime. Oh, and a good friend that works with Ahna stopped by to do a casting of Liam’s hand and foot. She also came to do the same thing with Ezra when he was 9 days old, so it was very nice of her to make it to the hospital this morning to do one for Liam. On that note, if you are looking for someone to do it for you, let us know and we can put you in touch with her.

Ahna and I each took turns holding Liam in the early afternoon prior to taking the tube out. Yet another meeting with the Doctors was the immediate precursor to the actual extubation, which took place a few hours later than we originally intended, but still in the afternoon. I can’t begin to tell you the amount of thought and discussion that took place prior to taking the tube out, both between us and the Doctors and between Ahna and I. There is a lot of weight on every single decision at this point, and the emotional toll is enormous.

Just before 4pm, the staff came in and removed the tube. Liam has had the tube in place since just after he was born and still at Parker hospital, so we knew that there would be a learning curve for him in order to be able to breath on his own. Oh, I totally forgot a really big part of the day….the EEG. We met this morning with the Neurologist and had some discussions on Liam’s seizures and the treatment. They said that they are essentially at a stopping point with the treatment for the seizures. Not stopping the medications, but not able to give much more or a different type. That in conjunction with the sort of seizures that Liam is having, lead us to decide that he didn’t need to be on the EEG anymore. Liam continues to have seizures, but they are non-clinical (meaning that you can’t see them) and they are enough under control to merit removing the monitoring system. Once the EEG was removed, the cleaning began. If someone out there is smart enough to invent an industrial strength cleaning product that is both environmentally and baby friendly, you could make a fortune with hospital contracts. Cleaning off the conductive gel and the marker from the lead placements was a task and challenge in it’s own right. However, the silver lining to the cleaning was that we actually got to clean Liam. It was our first time able to do that for him at all, and it felt really good to do.

Okay, back to the extubation. The Respiratory Therapist removed the tube, and in a matter of seconds he was all of a sudden without tube or hat for the first time since he was born. They did place him on a little bit of oxygen via a nasal cannula, but that’s the only breathing support that he is getting. He did in fact have to work really hard to figure out how to breathe, and it was really interesting to watch him learn how to work all of the parts to get air without a tube. It was exhausting for us to watch and a little worrisome at times, so we can only imagine how exhausting it was for little Liam. We were fortunate enough to be able to hold him while he worked his way through this process, and you could witness a minute-by-minute improvement in his ability to breathe. His oxygen levels and respiratory rate looked good from the moment that the tube was removed, and he continues into the evening his strong performance.

It should be noted that this is what was expected to happen when the tube was removed. All medical indications pointed to his ability to be able to successfully navigate breathing without the tube in, but the worry, stress, anxiety, and emotion were really high all day long. We know that this is somewhere between a small step and a big step, but tonight it feels good. There are many, many tough decisions and days ahead, but tonight we celebrate that Liam is sans tube and hat, and that we get to see him and hold him without those things for the first time.

PS – Through this process, Ahna is having to learn the camera and becoming quite the photographer. Some of her best work yet is below.

Comments

  1. oh he’s beautiful!! like a butterfly coming out of all that stuff 🙂 here’s to a good day with a lot less gear … good job Liam!
    ps: so right about the EEG goop/glue – terrible stuff!

  2. How wonderful that you all can be together. Isn’t it amazing how good Ezra can be? He seems to sense the importance of it all. Oh my, how this brings back memories of our grandson, Michael, born in Aug. 2001, when he was rushed to Children’s Memorial in Chicago right after birth with a diaphramatic hernia. He was on a ECHMO pump for 10 days, and the stress of how he’d do after taking him off it. The emotional ups and downs are very exhausting with every little step. Our thoughts and prayers here in West Salem by many people are with and for you.

  3. what a sweet baby! he’s so pretty… in a handsome way. you are still in our thoughts and prayers!

  4. he is a beautiful boy, especially now that he’s all cleaned up! Love the red hair! So glad he figured out the breathing, it seems learning curves are always steep!

  5. So happy to see Liam breathing on his own! And that sweet face…and the dimple :). You guys look amazingly good given how drained I’m sure you are. Sounds like you will be able to hold him easier now which I’m sure will be wonderful. Hugs to you all.

  6. I’m so thrilled for a successful extubation! And i hope you get some movement on the seizure meds and seizures soon, those are no fun. Hes also beautiful! Oh, and olive oil is good for getting the goop off scalp and hair! It softens it! Awful stuff.

  7. He is so precious! Sending much love!! xoxo

  8. What a sweet, beautiful little boy! Liam was part of our Oplatki–a Polish tradition of well-wishes and thanksgiving–and prayers! God’s arms around you!
    janet

  9. dee and eric says:

    wow, he truly is a gorgeous boy. I can’t get over it. So happy to hear he is off of the vent – that is wonderful news… (and yay for red hair! 🙂 love you all. Dee and Eric

  10. Gil & Daphna says:

    DEar Oren and Ahna
    as you already wrote, Oren< it is almost unbelievable how saddness and happiness can co-exist.
    Liam is so cute and without the tubes you can almost forget the challanges he is facing.
    take care and keep strong. our heart is with you.
    gil and daphna.

  11. Jody and Norris says:

    You both are making so many tough decisions, but from what I read, you are doing a great job for your family. We think about you often and look forward to updates.

  12. Con&Sandi Rettmer says:

    Matt sent us your web site yesterday and we are both full of tears and then smiles when we see pictures of Liam.It’s been along time since we have seen you but do want you to know that you are in our prayers.We look forward to positive updates.God Bless.

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