Sunday, May 2, 2010

The Roller Coaster

I'm a bit behind on blog posts. This is 75% due to us really enjoying being able to take Jordan out into public again and 25% due to me returning to work part-time and feeling lazy in the evenings. But I do have several posts half done so hopefully I will get some more energy.

The past two weeks have been a bit of a roller coaster for our family. On Monday two weeks ago Craig took Jordan to MSKCC for her second round of antibody therapy. I prepared Craig for what to expect with this difficult, painful treatment and his father was accompanying him for the day. When it came time for the infusion Monday morning nothing happened...Jordan completely slept through the treatment. While it is a bit sick to hope your child has pain, not having pain can indicate a patient has developed resistance to the antibodies. Four cycles of antibodies is considered the necessary minimum and Jordan has only completed one. With antibody therapy being one of the best ways to prevent relapse, Craig and I were quite disheartened at the prospect of Jordan already being resistant.

On Tuesday I went to clinic with Jordan feeling a fair amount of anxiety around whether or not she would experience pain during the infusion...but we didn't get to find out. Right when we arrived Jordan started moaning and breathing very fast. When checked, her oxygen saturation was only in the high 80's. Six breathing treatments later Jordan was still requiring oxygen to keep her saturation in the 90's. Dr. Kushner decided to hold the antibody therapy for the day and admit her to the hospital for observation.

Unfortunately, Jordan's respiratory status continued to deteriorate rapidly throughout the day. Jordan responded during treatments but her breathing and oxygen tanked as soon as they were over. Her entire little body was heaving with each breath...the doctor was worried that at some point she would run out of energy. By the end of the day Jordan required the BIPAP machine to breath...BIPAP provides pressurized oxygen to make sure the oxygen gets into the lungs. We were also transferred across the street to the PICU at Cornell in case Jordan continued to deteriorate and needed to be put on a respirator.

Tuesday was definitely a rough day...it was terrifying how Jordan got so sick so quickly. Thankfully she began to improve on Wednesday. The PICU attending diagnosed this episode as a viral respiratory infection/asthma attack. By Thursday Jordan was still on oxygen but off the BIPAP machine and her biggest issue was repeated vomiting from all the mucus in her lungs. Since her breathing was much improved, Jordan was transferred back to MSKCC Thursday evening.

Jordan was hospitalized at MSKCC through Sunday evening, which was about a day longer than we were hoping. The hospital team did not seem to be in a hurry to send Jordan home even though she seemed back to normal to us. If a child is walking laps around the nurses station, trying to scale the crib like it's a mountain, and not requiring any treatments that couldn't be done at home, I would think that child is ready to be discharged...but what do I know. :)

Our plan for this past week was to allow Jordan a little time to recuperate and then start radiation on Thursday. The radiation appointments were previously scheduled so Dr. Kushner felt it was best to move forward with them first before returning to the antibody therapy. Unfortunately, things changed on Wednesday. We found out that the radiation was being bumped until Friday (not a big deal)....and that a blood test from the hospitalization showed Jordan does have resistance to the antibody therapy (kinda a big deal).

We are very, very disappointed that Jordan has already developed resistance. The possibility of relapse is constantly on our mind and not being able to go forward with antibody therapy is not helping to alleviate our anxiety. The resistance can wax and wain so Jordan will have another blood test in a few weeks and we are praying that the resistance will be diminished at that point.

Lounging on the IV pole...Jordan turns everything into a chair

Exploring under the crib

Watching the Peanut Butter Stomp on Yo Gabba Gabba

Jordan's interpretation of the Peanut Butter Stomp....there's a lot of thought going into this dance

Admiring her new harmonica

The harmonica came from Jack, an extremely nice nursing tech who wears a cowboy hat and western shirt each day

7 comments:

Michelle said...

Yes, that sounds like a terrible roller coaster. I wish you could get off that ride, and just leave that awful-themed park altogether. But I am so glad that she recovered from her lung yuck pretty quickly. And I am still praying for the best, for her and for you! She looks so precious in the pictures. I've got to meet that sweet girl!

Erin said...

Oh how we love that sweet baby girl! We pray for her without ceasing and are trusting in the Lord and his perfect plan. Love how these little ones of ours keep smiling!! They are wonderful blessings!

No worries about the blog...and I definitely don't think of you guys as lazy...only amazing parents to Miss Jordan! :-)

Dezzy Lou Where Are You said...

She always looks like shes having a blast. I had blood drawn last week and youd think they were amputating my leg! Heres hoping her immunity will decrease and she can get back on her meds to stop a reoccurance from happening. Lord knows you got millions of us parying for you and standing in her corner!

Allena said...

Love the pictures! She is so precious - I could just squeeze her. Praying hard for you guys. Hope the blood work comes back with no resistance.

Maria Parlapiano RN IBCLC said...

Sorry to hear the latest but glad to hear you all pulled throough it. I remember riding that "roller coaster" myself...and it's anything but fun. Wish I could put the brakes on that ride for you! Sending you the biggest hug in the world for Mother's Day - God knows, you deserve it!

Donna Ludwinski said...

I am devastated to hear about the early HAMA--but praying fervently rituxan will do its thing....love to you all!

Homa said...

Sorry to hear about the Roller coaster ride and I am glad that it is all behind. Praying hard for little Jordan. Love the pictures. Thanks for updating the blog.