Tired

Today was another challenging one with Watts. In a couple of days he should bounce back to his normal jolly self, with little to no memory of the yucky steroids, but I'm usually not as quick to recover.

The last few weeks have been hard ones on us. We are very worn out, in every sense of the word.  Michael and I have had several moments lately, typically once we collapse into bed after coercing our babies to sleep, where we have looked at each other and asked, "Is this real life?" or "How are we suppose to keep doing this?" We haven't quite figured out those questions yet but we are trying to take it all one day at a time. 

I've found myself singing this hymn in the harder moments:

Great is Thy faithfulness,” O God my Father,

There is no shadow of turning with Thee;

Thou changest not, Thy compassions, they fail not

As Thou hast been Thou forever wilt be.

“Great is Thy faithfulness!” “Great is Thy faithfulness!“

Morning by morning new mercies I see;

All I have needed Thy hand hath provided—

 “Great is Thy faithfulness,” Lord, unto me!

 

Home and 'roid rage.

Watts just went down so this will be short (before he's back up), but we are home. We are very, very thankful that the positive culture was deemed contaminated and that we were able to go home without completing all of the 10 day antibiotic course.

We came home to our new house with an angry baby, unfortunately. Watts is back on steroids for the next week as part of his protocol and he is exhibiting all of the awful emotional side effects... affectionately called "'roid rage". Sigh. These are some long, long days of screaming and crying and not knowing why he's agitated or what he wants. We have moments of happiness that we try to cling to but overall it is very challenging...we miss our jolly little guy.

Monday update (day 5 of ER hospital stay)

Babies are both napping in the room, by some small miracle and a few conversations with the three year old. We are all well. Stir-crazy, but well. The team decided to take Watts off of antibiotics and observe him for 24 hours. If he remains fever-free, we might be going home tomorrow.

Below is our cute spaghetti-face boy...

Sunday.

Watts is doing great. No fevers, no more positive cultures, and his ANC is a little higher today( (100).  Dr Castellino, one of the attendings, seems to think that the positive culture was not really a blood stream infection but was a contaminated culture from when the ER drew the blood. This would definitely be best case scenerio. Tomorrow they are going to try taking him off all antibiotics to see if his fever comes back. If it doesn't and cultures continue to come back negative, we might be going home in a couple days! I was thinking that we would be doing a 10 day regimen of antibiotics so anything less than that would be great. 

Tomorrow morning Watts will be getting some chemo (vincristine), a lumbar puncture with more chemo drugs (methotrexate, hydrocortisone, and another that I can't remember), and he'll start back on those crazy steroids. All of these were suppose to be done outpatient, but we are happy that we can stay on track with treatment and do them while we are here. We are also still doing daily neupogen shots to boost his white blood count.

Off to snuggle my now-sleeping wild man.

Silly boy.

Morning update

Watts is doing great. He slept well last night, only has a low grade, and overall is his normal goofball self. It is so, so, good for us to see and puts a lot of worries at bay. The doctors still haven't rounded today and we haven't found out specifically what kind of infection is going on but we were told yesterday that his behavior is one of the biggest indicators of how his little body is handling and fighting the infection. 

If that's the case, then I think Watts is kicking the infection's butt! Please keep praying for protection for his little body, for his ANC to rise, and for strength and patience for Piper, Watts, and me.

Edited to add: 

Doctors just rounded and the infection is coagulase negative staph in his line (the same infection that he had before), ANC is still at zero, and he needs another platelet transfusion. This is one of the "good" bloodstream infections to have so we are thankful! It does bring up some questions about possible line contamination... This is a new Hickman since the last infection so it has not been residing there all along, which leads us to question how he has acquired it twice in the last month. The team is going to be doing some investigation but seemed pleased with how well Watts is doing.

Thankful.

Thankful for many things tonight...

For this little guy, who stood for the first time today.

For Piper Bloom, who is hilarious and resilient and always, always has us laughing.

For my man, who is a rock for this family.

For encouraging words from kind doctors.

For coffee brought from a friend this morning.

For milkshakes brought from friends tonight (I'm going to miss you, Anna Black).

For our ninja-night nurse, Kimberly

For warm hugs from RMH staff.

For texts, emails, and calls of encouragement today from friends and family...we feel loved and prayed for.