BMT +28 (Tuesday, day 44)

It was a rough one. Naomi slept well but her snoring and occasional coughing told me that she was indeed sick. Her temperature was not elevated though.

I woke at 7:30am and prepared to leave. The children were all difficult to get up, dress and get out the door. Bot wanting to mess with carrying food across the bridge, I tried to feed them quickly. But, Sinéad refused to eat and Caitríona was pokey.

We ended up being 15 minutes late. Sinéad also refused to sit in the stroller and insisted on walking. Eventually she started falling behind and then I had to pick her up and carry her. By time we arrived at clinic I was already needing to dig deep to find my patience.

Due to Sinéad having had croup and some other patients in the community havjng had parainfluenza (which is associated with croup), the dr felt that is what we were dealing with. Naomi had some congestion and coughing but her nose was clear. So there wasn’t really anything to swab to test and even if we did swab her nose didnt have any infectious symptoms. We decided to run a dose of IVIG to help her out since the history with Sinéad and others in the community plus her increasing symptoms were an indication of a growing viral infection.

IVIG is a mix of antibodies that is useful for many illnesses when a person is immunodeficient. Naomi has really no lymphocytes yet. So she is at risk for viral infections. The IVIG is administered over 3-4 hours and she needs her vitals monitored very carefully while it is running. They start it slow and then kncrease the speed as she can tolerate it. Side effects can include blood pressure issues, headaches, nausea, aches, back pain, and a general feeling of malaise.

About an hour into the infusion, after the third increase, Naomi suddenly started coughing and said she thought she was going to vomit. We both hurried to get her upright and she made it to the sink. It was so sudden that we didn’t have any time to prepare. The nausea hit suddenly. I pressed our call button. I said, “I need a nurse please.” Within 5 seconds the room was full of her entire team: nurse, dr, nurse practicioner, and another nurse. It was a little shocking. They thought she was perhaps having an allergic reaction and all rushed in for that reason. When they realized she had vomited they were less concerned.

They slowed the pump and then after a few minutes tried to increase it again. Same as last increase, it caused her to vomit again. So they stopped the pump, gave her zofran, then a dose of steroid. They waited about an hour and restarted at a low speed and started the increase all over again. She tolerated it well. It continued to run until about 2:30pm.

While all this was happening, I was doing all kinds of acts, tricks, songs and dances to keep Sinéad out of trouble. She choose today to be efficient with the potty which meant she kept stripping in the room and giving the nurse a full show. Thankfully we had a private bathroom today as that is not always the case.

I am realizing that I do not get many photos of Caitríona….. it may be hecause she is so well behaved…. it is also because she is too busy and goes from one thing to the other so quickly!  I also call her Curious Cait because she really keeps me on my toes.  6 hours at clinic provided for a lot of curiosity to keep her mind busy.  Together, Caitríona and I did some school lessons, colored, played candyland, but neither of us earned a SINGLE piece of candy! So weird. We also watched some Curious George movies.  I am always amazed at how a monkey can help calm things down.

Naomi got to play a virtual reality game. She was on a boat and scuba-dived in the sea. As she looked at a fish and pushed a button on the game controller,  the fish turned from black and white to color. The headphones played music and the goggles blacked out everything else except the game. She enjoyed it.

Sinéad fell asleep in my arms about 30 minutes before we were ready to leave. I held her until Naomi was done. She then gave me a really hard time getting into the stroller again. I feel as though I have reached new limits in parenting. As I was becoming exasperated, she threw herself on the floor. I very quickly saw that as an opportunity  and picked her up while keeping her in the sitting position. I placed her in the stroller and very quickly got her strapped in before she knew what had happened. Before she thought to fit back she was already strapped into her seat!

After such a long day, I had the girls in bed at a decent time and got some much needed Mommy time alone.  I finished this puzzle.  Puzzles are so therapeutic.

Support Naomi by commenting here! She loves to read your posts!

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s