Blood Pressure Woes

The high blood pressure Graham has been experiencing over the past few days escalated yesterday and reached dangerous levels last night into this morning. The docs added a new medication and changed the dosages of his current ones. Thankfully, the numbers finally began to fall. Uneasy hours. His levels are still not ideal, but we hope to get into a normal range soon. The suspected cause of this blood pressure problem is his damaged kidneys...specifically ATN (acute tubular nephritis).
We will keep you updated as we learn more.

Extubation!

Graham is extubated and he is still resting comfortably, now, nearly four hours since that nasty ventilator tube was removed. He is breathing on his own and he is putting up good numbers. His pulse ox is in the 90's and his blood gases are great. The G-Man is getting a minimum amount of oxygen through a cannula. He is much happier and so are we.
The surgery yesterday to put in the tunnel line went well. Graham is getting his nutrition and meds through this line in the same manner he did with the central line.
G's blood pressure is still a bit high and the culprit is his weakened kidneys. As mentioned in the previous blog, this problem should solve itself as his kidneys naturally heal.
The next hurdle is to get real food into Graham's system. He is now off the pain medication necessitated by the ventilator. The morphine may have slowed the digestive process, so we are hoping the next few days will show positive signs and he can begin taking breast milk through a stomach tube.
Hour by hour. Day by day. We are cautiously letting ourselves think Graham is finally getting back his health.

Capturing Moments

Bill's cousin, Angela, came by yesterday for a visit. She happens to be an amazing photographer and captured some precious family moments.

Angela Brown Photgraphy
Carmel, IN

A Hiccup

Tummy time

Graham gave us pause yesterday when he developed a fever of 100.4 degrees. This set off a flurry of activity that included blood tests, cultures, and x-rays. The immediate worry was another infection. This development came as we were starting the countdown for the ever-so-important removal of his ventilator. The fever was coupled with an unusually high heart rate, further indicating an infection.
We do not have the blood cultures back yet, but G is back on track today...normal temperature and heart rate. We hope this was just a hiccup in his road back to health.
Graham has been experiencing high blood pressure and has not been responding to normal blood pressure medication. We found out today that he has some kidney damage that is causing the high BP. The docs feel that as his kidneys heal the BP problem should solve itself. Time.
Tomorrow will be a big day for the G-Man. A less-invasive tunnel line will be put in, which will replace his central line that was removed today. This surgical procedure will take place around 1:00P tomorrow. The tunnel line is less prone to infection and will serve essentially the same purpose as his central line. The big bonus, we hope, is that if the procedure goes well, his ventilator can be removed afterwards. The respiratory therapy team says his numbers indicate he is ready.
The attempt to introduce breast milk through his stomach tube was a failure yesterday. Although small amounts were tried (5 ml every two hours), he vomited them back up. It was disappointing ... a reminder we are always on "Graham time". But Dr. West said some part of his digestive system is just not quite ready and they will simply try again in a couple days.
The rash is still a puzzle, thought somewhat less pronounced today. The use of steroids has been put on hold for now, for a number of reasons.
After making the flight from Turkey, Uncle Ward was able to see Graham for the first time late last night. The scene of Katie and Ward looking at and touching Graham warmed Grandma and Grandpa Ryder's hearts.

Eyes Wide Open

Today was another day of progress for our Graham, who can now open his eyes with relative ease. His weight is down to 8 pounds, and he continues to pee ample amounts. Now that he is close to his normal weight, the docs are planning to lower his diuretic dosages. And if G's respiratory numbers continue to improve, they also hope to remove his ventilator. The ventilator is causing him some discomfort and for other medical reasons the sooner it is removed the better.
Tomorrow morning Graham is taking a trip to the first floor for a "MAG 3" test. It is a scan that will evaluate his kidney function, and is being performed to help determine why his blood pressure remains high.
We are also anxious for Graham to begin getting breast milk through a feeding tube and hope to do so in the next few days. We keep setting goals, but we've learned it is the G-Man who decides when he is ready.

The Incredible Shrinking Baby

The yellow stream continues to flow and the results are impressive. When Graham began the "Great Pee" almost three days ago, he weighed a tad over 12 pounds (his birth weight was 6 pounds 12 ounces). He is now under ten pounds. He looks remarkably better and even briefly peeked at us with one eye. We hope the loss of edema will begin to improve his lung and heart function. Fluid continues to be suctioned out of his lungs.
Mom was able to hold him again today. It is quite a process given all his connections, which include his ventilation tube, and several lines leading into the central line. We hope that he can begin to take breast milk through a feeding tube to the stomach tomorrow.
Graham is still relying on a ventilator and his need for oxygen still hovers around 30%. His is beginning to "breath over" the ventilator, which is a positive.
Overall, we are seeing a more alert and active baby, who needs pain medication less often. To our great relief, Graham was taken off all antibiotics and anti fungals yesterday. We are looking forward to when the ventilator is removed and he can begin nursing again.
Uncle Ward is flying in from Istanbul and will be here late Tuesday night. His arrival will be a boost for all of us.
Good days! What a difference a week makes.

A Well Deserved Post

It has been three weeks since Graham became very ill and we were forced to return to Riley Hospital. During this time, thoughts, prayers, wishes, flowers, gift baskets, text and social media messages, cards, e mails, phone calls, and visits have consistently reached us at critical times. You, our friends and family , are wonderful people that have battled through this with us and have provided a level of support that we will never forget. Graham is your baby too, and we are truly amazed by the love and goodwill that we feel everyday. We love you, thank you and can't wait for you to meet the G-Man!

Bill and Katie