Maisy's Afternoon

Maisy has been resting peacefully this afternoon. It is nice when she has times of rest, because when she wakes up..she just wants to remove all the tubes and dressings from her body. She seems to be handling oxycodone really well as a pain med--this is a big answer to prayer because until now, we really didn't know if there was anything that would work without making her agitated.

She is going to stay in the ICU again tonight. But overall, she is doing very well and everything at home is going smoothly.

We did get some further results from her Echocardiogram that Maisy had yesterday. While nothing will stand in her way from getting decannulated next month from a cardiologic standpoint, there is something that is of concern. She has moderate tricuspid valve regurgitation which means that the tricuspic valve is not staying closed and blood is able to go both directions through the valve. She has an enlarged liver which is probably explained by this heart issue. Dr. Singh said that this is not something that needs to be repaired right now but that we will need to watch it closely...and when your heart already run on batteries like Maisy (she has a pacemaker), that is something we already do.

We are also starting to get the results of Elijah's Blood tests and bone marrow biopsy last week. The cytogenetics (very specific tests of the bone marrow) are not back yet, but most of the blood work is in. So far we know that Elijah is not processing the fat soluble vitamins as well as he should. He takes enxymes, and specific vitamins to supplement this. He is deficient in vitamin A, D and K at this point. Kids who are born with Schwachman Diamond Syndrome often have pancreatic insufficiency. Up to 50% of the kids outgrow this condition by the age of 4. Elijah has not outgrown this complication and most likely will not outgrow it at this point. He has lost some weight and looks a bit scrawny right now. But, overall, the conditions are able to be managed with diligent nutritional supplimentation and a great gastroenterologist. We are covered in both of  those areas. And now, we are waiting for the bone marrow results.

Wow..it has been a "medical" month around here. Now if I can just keep all of the information straight in my mind and remember what condition goes to which child, I ought to make it through!

Maisy update

Maisy settled in to her room in ICU by 6pm last evening. She still has a large gauze wrap around her head, but her face is not as swollen as it usually gets. That is good news. She has required quite a bit of blood but that is not unusual for this type of surgery. She is still quite agitated. All night she was itchy and unsettled most likely due to the pain meds. They finally gave her some propofal (sedation) and put her back on the ventilator. They didnot  have the rate of the pain meds up high enough---they are always so surprised that she requires so much med to make a dent in her pain--but for a little girl, she has built up tolerance to most pain meds and they seem to leave her more agitated than anything else. After decannulating (pulling her own trach out) in the early morning, they seemed to get the idea that she needed to be sedated even more. So, from about 7am this morning, she has been sleeping peacefully. We have a new room in the brand new ICU here at Children's--sounded so nice until we have had a few glitches. Each room has a very large window with normally a beautiful view of the city--Maisy's room has a great view of some sort of air conditioning unit..not a problem, but they didn't install the shades yet. The room is very bright for a little girl who just had major cranial/neuro surgery. The new ICU rooms allow parents to be able to sleep in the room without getting in the way of machines etc..That is really a blessing.

There are no computers available to check out and so I can only come down to the geek squad lab (located right in the hospital!) to send out an update when I can sneak out of the room. So, you may not hear from me much...when Maisy is awake, she is moving...fast!

We have anticipated this hospital stay in a different way than others. This surgery is for Maisy, the beginning of lots of potential milestone surgeries. In a month, if all goes well, we will come back to have Maisy's trach removed. Down the road, we may be able to remove her g-tube when she starts eating on her own more. I can't help but feel such awe at the healing that has taken place in this little precious girl. She is a walking (running!) testimony of what God can do...and we are so blessed to be walk along side her (okay probably chasing her..) grinning from ear to ear as we celebrate the way God is using her to shine His light in this world.