Ollie's Journey

Ollie was born on 7/17/15 with a congenital heart defect called TAPVR, and persistent hypertension. He later developed pulmonary lymphangiectasia. He is currently hospitalized in the PCTU at CS Mott Children's Hospital in Ann Arbor, Michigan. This is his journey.

[olliesjourney]

The bay is closed

The bay (what they call Ollie's unit) has been closed for a while and it looks like they're just starting a procedure so I won't be able to go back to his room for at least another hour. They close the bay and send visitors and parents out when a patient is having a procedure done that requires a sterile environment. So I'm going to take this time to get Ollie's website together.

It's very easy to feel frustrated and angry when they close the bay and you can't get back to see your kid. I get it. Josh and I have both been there, as have his grandparents who come to see him often. But then it's the day your child is the one having the procedure done, and you're sitting in the waiting room wringing your hands and pacing the short space between the coffee table and the arm chair, and you overhear other family and visitors in the waiting room complaining, and suddenly you freeze. You listen for a minute while they whine about the bay being closed for so long, insisting that it must be closed every other day, swearing about how inconvenient it is, and "how dare they" and "what are they doing anyway?"

And it takes all your strength not to hiss at them, "That's MY son in there! Getting stitched up/being put on ECMO/being taken off ECMO/getting chest tubes put in! That's MY son whose life could be threatened by the tiniest germ that YOU could track in on YOUR shoes/clothes/breath! THAT is what they are doing!"

Then you compose yourself; furiously type an angry text about it to your mother in law with your thumbs, take a deep breath, read her encouraging response, hope the frustrations and pain of the other parents is made better somehow, and go back to pacing.

Anyways... Ollie’s Facebook page and website will have the same information, so don't worry about having to keep track of updates in two places. Posting everything I write on Facebook to his own website will make it more searchable and easier to find by parents whose kids may be going through the same thing. You can follow along however you wish, it will all be the same.

[olliesjourney]

No milk, no formula, no nothing

Ollie's team met this morning. His cardiologist concluded that they need to solve the lymphatic problem first before he can continue on any kind of milk, and decided to suspend his feeds for now. Even though his chest tube output is less than it was a week ago, it's still enough to cause concern regardless of whether it's clear or cloudy. He's lost some weight but the fluid is not leaving his tissues like it should.

He's currently on a dextrose drip (the absolute minimum nutrition he can be on) and they'll start TPN again tonight. He was not given formula. They are however going to start an oral medication to replace his nitric oxide gas; even though he is not getting milk, his gut has been stimulated enough from getting breastmilk the last several days to handle it. Once that med is started, they'll see how he does and then wean him off the nitric. His Versed is down to 80, his other sedative is also lower, and they will work on lowering his morphine later tonight. He was started on a medication called octreotide which works to decrease the flow of fluid through the damaged lymphatic duct.

His original surgeon has been contacted to assess his condition, most likely to decide whether or not they should move forward with surgery to close off the damaged duct. He should have an echo done soon to check his flow.

In the meantime I'm going to continue gathering what information I need about skimming my breastmilk in case he does end up needing a low-fat form of nutrition. In light of a possible third surgery, I'm glad he was not started on formula last night. A bad reaction to it would not have been good for him to experience right before being opened up again.

Love you little sir. Love you.