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Synagis & RSV

From Mark:

Getty got her second Synagis shot today. That is an antibody designed to protect against the respiratory syncytial virus (RSV). While RSV may present as a common cold in many kids, it can be life threatening to children with compromised respiratory defenses, like Getty.

The RSV season runs from about November to April. So, Getty will need to have very limited public exposure until spring. Nobody can come into our home who is or may be sick or exposed to others who are sick. All hands must be washed and/or sanitized in our home.

If either Kate or I gets a cold, the infected person must sleep separately, wash frequently, wear latex gloves at home, and wear a mask at home.

The Kaiser nurse told us the Synagis shot costs Kaiser $2,000 per dose, and Getty needs it once every four weeks. That works out to $14,000 worth of Synagis shots to get her through RSV season. For that price, couldn’t Kaiser just pay our way to Australia for the winter?

Oh well, Getty will be on lockdown until spring. Good thing it’s football season!  🙂


Completely Exhausted

From Mark:

Now that we are home, we are finding out just how exhausting surgery actually was. We are completely wiped out.

Thankfully, Grammy Nola has come over to lend us a hand, and some dear friends have brought us wonderful meals. Grammy Evelyn is helping us get some Thanksgiving dinner going. Thank you all!

We are adjusting to some new routines with the G-Tube, making follow-up appointments with doctors, running a few errands, sleeping with Cooper, and doing a few chores here and there the best we can. The biggest part of all that is the sleep. Getty’s recovery has gone well, but we need some recovery ourselves.

We just received a loaner pulse oximeter from SMA parent, Debby St. Onge. Now, we need to figure out how to use it while we try to get a pulse ox of our own. You have no clue who we are, yet you trust us with a valuable piece of your medical equipment. Thank you, Debby! We hope to have our own pulse ox pretty soon.

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We are so glad to be together at home.


Being Discharged Today!

From Mark:

Getty is going home today!

Her home bipap is on order and isn’t available yet. So, she is going home to get out of the hospital germ pool.

Getty is telling us she has had just about enough of the hospital experience. She wants to go home, get some rest in her own bed, snuggle with her family, and see her big brother, Cooper.

He misses his little sister.


To bipap or not to bipap…

From Mark:

It’s probably confusing, I know. Before surgery, we were fighting for bipap. Immediately after surgery, we were excited that Getty was going on bipap. Then, we were excited when she came off bipap a day later. Now, a couple of days after that, we are fighting to get her bipap. Are we schizophrenic or what? No.

You see, an SMA baby has limited muscle strength. One way to have a healthy and happy SMA baby is to help them use their limited energy in the most productive way. If a child can conserve some energy in one place, they will have more energy to use in another place.

SMA babies have underdeveloped muscles all over, including breathing muscles. As a result, they have underdeveloped lung capacity. The combination of low muscle tone and lung capacity means an SMA baby devotes more energy to breathing than other people would. This is known as the “work of breathing.” As a result of higher work of breathing, they have less energy to get through the day, to interact, to play, and to do anything else.

A bipap machine helps reduce the work of breathing via a nasal mask. When the child inhales, the machine blows air in. When the child exhales, the machine blows a bit less air in … just enough to keep the lungs inflated and clear, but not so much that the child can’t exhale upstream against the air pressure. In other words, the bipap machine does some of the breathing work for her, reducing the work of breathing and conserving her energy for other things.

For the past couple months, we were fighting to get Getty on bipap immediately after surgery to reduce her work of breathing post-op during her surgery recovery period. The doctor had not considered that idea before, but we convinced him to do it, with the help of other families and Dr. Schroth in Wisconsin.

Since we were going to use bipap for the first time post-op, we fought to get some hospital time pre-op to allow Getty to get used to the bipap machine before surgery. We were excited the doctor agreed to that.

So, we were excited to get pre-op and post-op bipap. We were also excited to see Getty come off bipap the day after surgery. This was exciting because it showed us Getty is still capable of breathing on her own … that she was not suddenly bipap dependent as a result of the surgery.

Now that we have established she is not bipap dependent, we have been fighting to get bipap for night use at home. The theory is that night bipap will reduce Getty’s work of breathing while she sleeps. This will conserve her energy, allowing her more energy and lung capacity during the day. This will make her a happier and healthier little owl.

Our doctor did not buy into that theory because Getty was strong enough not to need night bipap at home. He did not want to prescribe home bipap without a demonstration of need. We tried to convince him otherwise because Dr. Schroth prescribes and many other SMA families use night bipap at home, and they swear by it. I believe Dr. Schroth’s philosophy is that SMA1 babies inherently need bipap at night, so she gives it to them without a fuss.

As Getty was resting, post-op, she started sweating. There was no apparent reason for it. I argued to the doctor that the reason she may be sweating is because she is doing extra work of breathing to keep her oxygen levels up. The doctor agreed it was possible. Accordingly, he changed his mind and is now working on sending Getty home with her own bipap for night use.

We are happy that Getty will now have some breathing help while she sleeps. This will help keep her lungs clear and will give her more strength to devote to snuggling and playing with us during the day!

It stinks that we had to fight so hard to win the bipap battle, but it is won. We thank family, friends, the SMA community, and Dr. Schroth for helping us win that battle. We thank the Kaiser team for their willingness to listen, learn, and ultimately do the right thing. We also thank the Kaiser team, especially our surgeon and PICU, for all they do every day … especially the nurses who politely tolerated my barrage of questions and concerns.

Thanks to all of you, we now have a happy, thriving SMA baby with a G-Tube, Nissen, and soon-to-be home bipap.

PS: Discharge from the hospital may be delayed until Sunday to sort out the home bipap thing.