Poppy has had a cold since Monday. We’ve been monitoring her closely and were advised by the transplant team to call if anything at all should change, but otherwise watch her closely and support her through it- she’s really been handling it like a champ. Over the past couple of days, she had been a little more sleepy, which I was attributing to her being under the weather, as well as being more irritable- Poppy is such a chill babe, that this was definitely a change. Also, her vomiting had started to change from clearing mucous from her cough to more watery liquid happening out of no where. I started thinking this doesn’t seem like a cold but it is a change and I’m calling. Could it be her brain shunt? I called early this morning around 6:30. Dr. Kemna, one of the transplant docs encouraged us to at least have her checked out.
Ok, I thought….let’s just go rule out the shunt- let’s just be sure it’s not the shunt- probably be home in a few hours. They order a CT scan, and a series of X-rays to check the shunt called ‘shunt series.’ Pretty standard imaging when checking on brain shunts. The results come back in an hour or so..one of Poppy’s ventricles in her brain is not draining as it should. The vp shunt that is in place has actually done a great job of draining the other ventricles that were once enlarged, but now this undrained ventricle is actually bigger today than the original CT scan…it’s bigger….and seems to be isolated in itself- the thought is perhaps scar tissue is keeping it closed preventing it from utilizing the draining power of the shunt that is there and has created a section of her brain to cross midline. Midline is where the brain divides in half to the right and left- this enlarged ventricle has caused the midline to shift slightly…not something the neurologist super thrilled about.
By this time, they are wanting to do some labs and keep us around- in fact the neurologist said point blank, ‘I’m advocating we admit you.’ What? Really? So…we started waiting for an open bed on the transplant surgical floor. While we are waiting, Poppy is sleeping- really the entire time-is even seeming slow to wake. I put her down and change her diaper, look her over and just to check on her neuro status, I start to see if she’d track me, or my fingers, or a snap …after much attempting, she is able to very briefly move her eyes toward my snapping- short lived, but she did it. And of course, now I’m wondering..was that real? Is it just because I know one of her ventricles is enlarged? Am I seeing things? Possible..I am on the verge of crazy and definitely sleep deprived…
We get to the floor to have Poppy a hysterical mess. This is super unlike our girl who is very consolable and sweet- this baby is not calming down and her cry is full on hysterical. Outbursts like this are what I had begun to notice a few days ago, but had also thought, hmm, she’s got a cold, she probably doesn’t feel so good…babies fuss.
Immediately we are seen by neuro, and I voice my concern about how her eyes are not really wanting to go to the left. The charge nurse decides it would be worth it to call the risk nurse. The risk nurse is an ICU nurse that checks in on high risk kiddos on the floor. This will be great! Hopefully it’ll be a nurse who knows her well- and sure enough it was!! She at once knew Poppy was off and began trying to console her and attempted to get her to look to the left. I could tell she was quickly becoming as concerned as I was and said, ‘we are getting ICU involved…now! I’m calling them.’ And within minutes a crowd of people came to check her out, including neuro, as her eye deviation had gotten worse in the short time we were on the floor. Between the risk nurse, Dr. Kemna, the neurologist from the ER (who had too seen the drastic change in just a few short hours), pleaded with neurosurgery to send her to ICU and to get another CT scan on the way just to see what the image looked like now, after the change in her eyes. ICU took her to CT on the way, and by the time we made it up to her the place she’d called home for so long, the CICU, they could see that the ventricle had grown over the 6 hours we had been at the hospital. The entire neuro team decided that even despite the risks involved (her higher chance of infection due to her immunosuppression and high bleeding risk due to her blood thinner) that they had no choice but to ‘make her safe,’ and put in an external drain. Within 30 minutes, Poppy was on her way to the OR for the I don’t even know the number of times at this point…but pretty much know the drill. Honestly, at this point, as stressed out and physically exhausted as I am, as I ever am when she does go to the OR, I’m past the point of worry-don’t get me wrong, I do go down the road of what ifs, but that’s brief and then it’s like I start to think about all she’s been through-she is so strong..such a fighter… the bravest girlie I know…there have been so many times God could have taken her home….I know that whatever happens, God IS in control and His will Will be done. These are the times when you simply fire up the worship music and find your Jesus- let God take over and pray and beg that your selfish earthy will and His divine will match up.
Today it all happened so fast that it really didn’t hit me fully until she came back. What if I had written it off as cranky tired sick baby? Would I have noticed the eye deviation? What if?!?But my gut said shunt, and thank my Lord Jesus for the Holy Spirit!!! Praise the Lord I put aside the possibility of being wrong, and truly hoped I was, and actually listened to Him. So awesome and wondrous…He totally has it ALL.
Poppy came back with an external drain. On a side: the same patch of hair from last time, clipped right down to the skin- I’m thinking we will have to give in and make it even at some point- it had a chance of catching up to the other side, I’m afraid not any more…how vain, but she’s my girl and my girl is gonna look her best 😉
So this external drain is a temporary ‘fix’ until they decide what to do for her permanently. And honestly it’s kinda freaky. The drainage container just sits beside her bed and shows what’s drained- like you can see the fluid, much like you can with a urine folicatheter. It’s nuts.
Right now they are keeping her off her blood thinner in anticipation of the upcoming surgery. The question right now is, do they move the shunt that’s there, or add an additional catheter to the current shunt? A timely decision will be made, as she currently has a clot from a previous picc line, and really needs to be on her blood thinner. Also right now, her neuro exam, while they are overall pleased, it does seem that her eye deviation has switched, and she now has trouble looking right. I’m sure this will change as she settles out from surgery.
Please continue to pray with us for God’s peace to abound and for Poppy and her CICU buddies to be lifted up in prayer for the crucial days they all have ahead.