Thursday, October 14, 2010

It's Always Something

Nat, Natty, Natters, Baby Tee, Natalata-dingdong...Natalie has a lot of names she answers to. I sometimes call her Cassius Clay in honor of her fighting skills or Natalie Evelyn because I love her entire name. Now I am adding Roseanne Roseannadanna to the list as truly it is always something (oh, and I love love love Gilda Radner).

This morning I held my breath before I called. When the nurse answered I immediately knew things were not good just from the sound of her voice. She had spent an hour trying to get Natalie to saturate above 70%. They had just d one a chest film and were waiting for results. About a half hour later Steve called-the film was awful and we needed to go in. Luckily Steve's mother was available for babysitting.

When we arrived she was doing a little better but never got a chance to rest. This part of the day is a blur to me. She was still struggling with saturation and there were no answers. They did blood cultures, CBC, CRP and trach aspirates for viral and bacterial cultures. The X-ray showed big changes that could be attributed to infection or worsening lung disease.

Over the past few days (or week?) she has been sounding increasingly tight, much like someone in the midst of an asthma attack. She does receive albuterol to help with this and always has a good response to it. They have been gradually increasing the doses she gets a day. She also gets a nebulizer of pulmicort, which is a steroid to help combat inflammation.

The pulmonologist came in to examine her and formulate a new plan of attack. Her albuterol is now given continuously through a drip into the nebulizer (she has a very nifty inline nebulizer attached to her vent). He added prednisone (oral steroid) to help with inflammation. If these changes are not enough, she may get another nebulized med and an IV drip of aminophylline.

Those changes started a flurry of activity. Then her nurse stepped out to speak with the attending and returned saying "I just told Dr. S that I love him. Why do you think I would do that?" I was so hopeful it was because the new trach had arrived. All morning I was fighting the urge to go to the loading dock and beg them to rush it through. The attending himself said "You know if I had a tracking number I would be checking it all day."

Well, the trach had in fact arrived just after Steve left to pick up lunch. One of the last things he said before leaving was "I bet the trach hasn't even shipped yet." Finally I got to call him with some good news.

Suddenly it was Christmas morning in Natters' room. Dr. S opened the box and handed the trach to me so I could check it out. A group of residents and respiratory therapists gathered outside her room to prepare for the change.

Now, here is a little lesson for everyone on advocacy when someone you love is in the hospital. While the group was assembled outside I went over and grabbed the "owners manual" for the trach. This is just me. If I buy a new microwave I will research it for hours and read the manual cover to cover when its home. Certainly I wanted to know what information came with this new trach.

Her cuffed ET tube was inflated with air. This cuffed trach specifically recommends inflating with sterile water. I went to the group and pointed this out. No, no, no....they always inflate with air. Well, you also always use Shileys.
For Pete's sake, you've never used an Arcadia brand trach, why would you think you know better than the manufacturer??? I had no intention of leaving the room with them planning on using air when it says water.

The doctor laughingly thanked me for reading the book as they shooed me from her room. The change went very smoothly and her air leak is almost completely gone. In some positions it returns a little but by far it is a huge improvement.

From there her day slowly improved, in part because she was finally left alone. One of her primary nurses developed a position that she loves to sleep in. We have been teaching it to other nurses over the past few days. In general if you get her set up this way and then pound on her back with a face mask (the cushy kind used in hand bagging) she will saturate better.

When I left she was at 90% FiO2 and saturating in the low 90's. This is considerably better than 100% FiO2 and saturating at 50-70%. I am sad that this is what we need to see as good news today, because 90% FiO2 is A LOT of oxygen, and not what we were hoping for post-cuffed trach. On the other hand, it seems she has picked up some other complications in the past few days so we need to be happy that we are still here and fighting.

The blood work shows no evidence of infection and the viral cultures will take a long time to come back. There is also very little more they can do if this is a viral infection. In a way her having an infection would have given us a clearer path to recovery. As things stand now there are no easy answers.

The attending did say that if micro-aspirating has been a contributing factor it will improve over time with the cuffed trach. That is not an immediate fix-all as the inflamed tissue would need time to heal.

I often wonder if people find this blog depressing and are reluctant to visit. I so wish I had nice shiny happy things to report. I do have pictures, though. Pictures always make frustrating posts easier to bear.

Natters reading up on bulls-eyes and her family

Sweet sleepy face

Natalie rocking the yellow ducky look

Snuggling with my mother...her first time being held by a grandparent. We look forward to her being stable again and getting her into everyone's arms. By the way, as soon as they put her in Grandma's arms she started to saturate high!
"I'm super cute. What else do you want from me?"

Annie celebrating her birthday at preschool

The Big Bass Wheel game......So, our family sometimes does have great luck. We were celebrating Annie's birthday at a local play center and Anneliese hit the jackpot-1000 tickets. It took about 5 minutes for all the tickets to dispense. Drawn by her success, many other children came over to try their luck. Then my 5 year old nephew Keegan stepped up and once again hit the big one. The kids had a great time cashing in their tickets for prizes. There is a fantastic picture of Steve wearing a pink princess cowboy hat posing with Keegan in his manly hat. I would love to post it but I also enjoy minimal conflict in my marriage.

Tonight I also want to say that we are hardly the only family facing such a difficult course in the NICU. Over the past year I have become close to many other mothers and witnessed their struggles. Not all babies come home. There are no words to make that better and it never ever gets easier to hear of loving parents with empty arms. I think of those children daily and will never forget their strong spirits.

There are also amazing babies still fighting every day despite having incredible hurdles placed in their way. I am so blessed to know these babies and their mothers. The NICU is not an easy place for anyone to be, but some families are given especially long and challenging journeys. Thank you to the mothers who let me know I am not alone and let me lean on them during times like this. You are in my thoughts and prayers daily, sometimes hourly, and I hope one day we can all gather our miracle children together when this is just a memory.


  1. Jen, you are just awesome girl! I am seriously in awe every time I read that it's your studying and suggestions that is making all the difference. You are one smart cookie and Natalie is so blessed to have you for her Momma! Keep at it girl, I in no way doubt what you guys are capable of! Love ya!

  2. Oh my Annie in that pile of tickets.....pricelss!
    And I think I've scrolled through the Natalie pictures more times than I can count. It's great to hear that the cuffed trach came, hopefully all the other things will get out of the way so the cuffed trach can get to work making improvements. Always praying!

  3. Jenn, you truly are amazing. I'm so impressed that you read everything! Wish I had learned long before now not to just trust that others will read and do right by my family.

    Question, can't your mom just move into the NICU? =) Natalie looks so cute in her arms too!

    Ah, payments. These things drive me crazy! I'm sure you are like me where I would have wanted to grab the phone and just give the trach company my credit card number and say get that trach here already! Glad it finally came. I sooooo hope it starts working wonders and Natalie can go back to the Shiley before too long.

    Hugs and love!

    Would love to see that picture of Steve...Annie is just so cute! Glad she keeps smiling for you!

  4. You and your family are always in my prayers. As hard as your posts are to read sometimes, I just think back to when you were pregnant and the crappy prognosis they gave makes what you are going through a little more bearable.

  5. JT - the girls are just gorgeous! My thoughts are with you... I hope Natters recovers soon and can work her way back up to where she had been before. I admire the strength God has provided your family! Hang in there!


  6. I love you!!!!!!! And seriously we really do need to meet up after all this is behind us and the kiddos are breathing without any devices....maybe 2 years, what do you say. My family lives in Ohio so you are not too far away from that so in a couple of years when we get to visit our families we can meet up. Sooooooooo glad the cuff seems to be working and soooooooo sorry its been such a long journey. Thurston is doing ok but he is still satting in the low 80s. They now think he may have some heart stuff and might do some more with that ugh. Anyway, always thinking about you and so glad to have you in my life. You are amazing!!!!!!!!