Sunday, January 31, 2010
We will keep you updated as we learn more.
Friday, January 29, 2010
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.
Thursday, January 28, 2010
Wednesday, January 27, 2010
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.
Monday, January 25, 2010
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.
Sunday, January 24, 2010
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.
Friday, January 22, 2010
Bill and Katie
After marking time for three days, Graham has begun to show some positive signs. Quite simply, he is peeing! And I mean peeing! The renal team and surgical team agreed on a new strategy which was implemented last night, and it has worked wonders. The hope is that his urine output will continue to increase and that the edema will soon begin to abate, which should result in improvements in his heart and respiratory functions. The swelling has impacted Graham in so many ways.
Graham had the two chest tubes removed today, which meant Katie was allowed to hold him. She is one happy mommy. The proof is in the picture.
Graham is still on full ventilation, but his supplemental oxygen is now down to 27% and he is off the nitric oxide completely. He is doing fine with these changes as evidenced by his pulse oxygen level at or near 100%.
The G-Man is still not ready for breast milk. His stomach fluids are still green, rather than the clear liquid that will indicate his digestive system is ready for his mother's milk. He is continuing to receive his nutrition through his central line.
A rash continues to make appearances. It literally comes and goes and manifests itself on different places on his body. Dermatology doesn't have an answer, but preliminary results from the biopsy taken three days ago indicate a possibility of vasculitis (sp?). But Dr. West thinks it is just another symptom rather than a cause.
We have learned to keep an equilibrium through this whole drama, but positives are always welcome. We celebrate the small improvements, like we saw today, that will ultimately bring us back our healthy Graham. We are all ready to step off this roller-coaster ride of emotions. Thank you all for following us through this horrendous week. Your words of encouragement and prayers simply make everything easier.
Thursday, January 21, 2010
Tuesday, January 19, 2010
Graham is now fully dependent on the ventilator. Before, Graham was assisting the ventilator, doing much of his breathing on his own. Now, he is fully dependent on the ventilator. But his pulse ox level is 100%, which is a positive.
Before, Graham was actually ingesting breast milk through a tube to his stomach, and he was pooping. Now, his digestive system is no longer functioning at that level. He is back to getting his custom-made nutrition (TPN) through his central line.
More worrisome, new symptoms that occurred during his crisis have not gone away. Although improving from the dangerous low of 30%, his heart function is still not back to normal, as he is now battling blood pressure and heart rate problems. He continues to need fluid removed from his lungs, though thankfully there is no longer blood in this fluid.
A new and disturbing development in the form of a rash manifested itself yesterday. After the long fight to get rid of his previous rash, this is disappointing news. The big worry is staph. The Dermatology team will do a biopsy today to try to get some answers.
Some positives ... Over the last 24 hours, the docs have started to wean Graham off the nitric oxide, which he seems to be tolerating well. He has also been taken off dopamine, which was used to improve his kidney function. This has resulted in slower urinary output, but it is still at acceptable levels.
Graham has been knocked back a few steps, but if his brief history of comebacks tells us anything, he will soon begin to charge forward. As so many of you have said and thought, he is one tough little man.
Sunday, January 17, 2010
Will give you all the details of the ordeal soon. Still not out of the woods by any means, so keep those good thoughts coming.
I'm checking in after a few hours delay from posting the above paragraph to give some of the promised details.
We watched Graham's condition deteriorate throughout all of yesterday into this morning. It seemed whatever the docs tried to do to stop the respiratory and later heart failure, nothing worked. We soon ran out of options and the situation became acute. Graham's dependence on the ventilator was total. Unfortunately, the ventilator, even supplemented with 100% oxygen, failed to maintain normal oxygen levels. A high frequency oscillation ventilator (normally used with premature babies and newborns) was tried and did not work. For various reasons, this ventilation process necessitated heavy sedation. He then went back to his regular ventilator, but had to be bagged with ever increasing frequency. Even with the bagging, Graham's oxygen levels could not be maintained at normal levels. Comparing X-rays taken in the morning to ones taken in the evening showed a marked deterioration of his lungs. Blood started to appear in the fluid that was taken from his lungs. More invasive measures had to be attempted, the first of which was putting in chest tubes to relieve pressure on the lungs and hopefully allow Graham to breath easier. This surgery took place after midnight this morning. There was no appreciable effect. His oxygen levels were dangerously low and could not be raised. An electrocardiogram found that his heart function was about half of what it should be. It was the nadir of the day and a decision was made to go ahead with a procedure called ECMO (extra corporeal membrane oxygenation), which would connect Graham to a bypass machine that would take over his respiratory and heart functions. Given Graham's condition, the procedure was extremely high risk and would buy only a week or two for him to heal. It would be the final option. While Graham was being prepped for this surgery, the surgeons tried one last procedure. A real long shot, they introduced nitric oxide in to his ventilator. IT WORKED! And it has continued to work the past nine hours. His oxygen levels are normal; he is peeing copious (relative to the last two weeks) amounts; his blood gases are normal; and added oxygen has been cut back. We know his situation is still critical, but every hour he can hold his own and perhaps start to heal those wounded lungs is a decided plus. Even if he has to have the ECMO at a later date, he will go into it much stronger with a much improved chance of survival.
Katie and Bill are tired but strong. We have learned to keep an equilibrium. We are heartened by the events of the last few hours, but we also know the G-Man has miles to go and may hit more downticks. The love and concern from friends and family was the only thing keeping us sane last night. Please continue to keep us in your thoughts ... we truly can feel it, no matter what the distance. We might have to invent a new word, because "gratitude" just doesn't cover it!
Saturday, January 16, 2010
The docs are now focused on Graham's profound breathing problems. He is fully dependent on the respirator that is supplementing oxygen at 100%, a level that cannot be long maintained. Ultrasound shows edema surrounding his lungs, which directly affects their function. Unfortunately, the Catch 22 is that lung function is important to relieving the edema.
There are options open to us. Much depends on finding a cause of Graham's edema. So far, it is a mystery. Graham is not following the script...maybe a preview to what his personality will be like!
The lifting of the H1N1 restrictions have allowed Grandma and Grandpa to relieve Mom and Dad in the NICU.
Thank you again for your loving support.
We know you will keep special thoughts for Graham while we wait. The blog will be updated when we learn more or if there are any changes.
Friday, January 15, 2010
Wednesday, January 13, 2010
Today Graham surprised us all and opened his eye all on his own! No help from Dad this time. It was the best moment we've had in a week and a half, so we thought we'd share it with you. He was so alert today, moving around and getting some of his personality back.
He also started on breast milk this morning (through a tube). I think we'll start to see some of his strength come back over the next few days. Now if we could just get that swelling to go away. They say the edema is the last to go and it looks like we're following that trend.
Saturday will be two weeks that Graham has been back in the hospital and also two weeks he has been on antibiotics. They will reassess whether or not to continue antibiotics then, and we should have a better idea of how long our stay will be. The new goal is to be out by the time Uncle Ward comes back from Turkey at the end of January. If not, we've already devised a scheme on how to sneak him in to see his nephew.
Bill and I and Mom and Dad would also like to take this opportunity to thank everyone who has come to visit us here at Riley. Uncle Andy and Aunt Kirsten brought us an amazing homemade dinner, Grater's ice cream, and lots of other goodies. Auntie Jen and Heidi took me out for a girls lunch in downtown Indy. Steve, Jodi, Aaron and Lisa were great friends and made the trip down from Fort Wayne. Derek, Joe and Sallie are right here in Indy and have popped in to see us. Our Hoopeston family has sent wonderful representation with Mrs. Anvick, Mrs. Foster, Mrs. Nelson and daughter Julie, the Shaffers and today we saw the Roots. It's hard to put into words how it feels to see you come into our world of worry and help deflate that stress. It really helps us to sit back and laugh and talk about other things. We just wish you could have met Graham while you were here. The visits, along with the many cards, phone calls, comments on our blog, texts, facebook messages, all make us feel surrounded by support and love.
Monday, January 11, 2010
As you can see in the picture, Graham's rash is completely gone, but the swelling is still there. My little 7 pounder weighs more than 10 lbs now with all the fluid that has settled in his body.
The top priorities now are getting rid of the swelling and getting his platelet levels up where they should be.
Today, G had an ultrasound of his spleen to make sure it was not enlarged. It was not. They also took a head ultrasound (I saw his brain!) to make sure blood was not present. It wasn't. Whew! They are looking for potential reasons why his platelet levels are so low, and docs were able to rule out both of those possibilities.
The Surgery Team, Dermatology, and Infectious Disease are all duking it out right now on what they think is the source of Graham's infection. Surgery is still thinking viral, and ID and Derm are thinking a staph infection affecting the skin, hence the rash and extreme peeling of the skin we're seeing now. We're still in wait-and-see mode, since some of the test results can take up to 2 weeks before showing anything.
I apologize to all of Graham's adoring fans for not posting these last couple days. I will definitely try not to let that happen again ... don't want to incur the wrath of Graham's fan base. : ) But don't worry if we miss a day or two ... sometimes there is little change from one day to the next. Please consider no news to be good news.
Thank you all for your concern for our little boy. Believe me, I understand how he just grabs onto your heart.
Saturday, January 9, 2010
Thursday, January 7, 2010
Wednesday, January 6, 2010
Throughout yesterday, lab results were coming back looking better and better.
Tonight he'll start receiving nutrition through his central line which will help him build back some of his strength.
Also, he is peeing! It hasn't helped with the swelling too much at this point, but we are happy it's finally happening.
He is still on the breathing machine, but they are starting to ween him because he is not needing as much help taking breaths.
They are still doing two dressing changes a day and keeping a close eye on how the omphalocele is healing. To our untrained eye, it looks pretty nasty, but the doctors say it is healing well.
No report back on the bacteria or viral cultures taken, so Graham still has us and his doctors a little puzzled as to what exactly he caught. We're hoping with time we'll know, but have been informed that sometimes it remains a mystery. As long as he gets better, that is what matters right now.
Time is what is needed now for our little guy to start to recover. We feel the worst is over, but we've been warned there could be some down ticks still in the future. It's such a relief though to start getting more and more good news.
You would all just be amazed at how much of a little fighter Graham is. Everyday, I just look at him and can't believe what he's been through and how he must be feeling, yet he's still kickin'.
On our end, we are anxiously waiting for those sweet little eyes to open up and look at us the way they used to. I also haven't held my baby since Saturday, so I'm itching to get him in my arms again.
Tuesday, January 5, 2010
Yesterday, Graham gave us a scare when he began to struggle to breath, so it was decided that the CPAP should be replaced by a ventilator. Since then, his ability to breath has improved immensely. This, combined with a little morphine and another blood transfusion, made him considerably more comfortable and less stressed, which will better enable him to fight the infection battle. Seeing him more relaxed has helped his anxious parents to also breath a little easier.
Another positive sign is that Graham's urine output has increased ... not drastically, but every little drop is golden, literally and figuratively. Dr. West said blood tests indicate that his kidney function has improved. Also, his swelling seems to have gone down a bit.
Today Graham will be given a echo cardiogram to determine if his heart function is normal. Specifically, Dr. West is interested in his ventricular efficiency. He is doing well in this department, but she wants to make sure all is okay.
Graham continues to get antibiotics. One has been changed to be more kidney-friendly and another was added to prevent a staph infection. There is still no word from the cultures on what, specifically, is the cause or causes of his infection, so they are covering all bases.
Even given these positives, we remain keenly aware that Graham is still at high risk and his situation is dangerous and unpredictable. But these hopeful events boost our spirits.
Your warm and supportive thoughts continue to carry us through yet another day.
Monday, January 4, 2010
Sunday, January 3, 2010
Graham is fighting a bacterial infection called pseudomonas, commonly contracted in hospitals. In the ER, his temperature was a dangerously low 94.4 and his white blood cell count was very high (26k), both of which indicated infection. His rash had become more pronounced, and his feet in particular were very red and very swollen. When the doctor unwrapped Graham's omphalocele, he recognized the specific odor created by pseudomonas. Graham was immediately started on an antibiotic through an IV, beginning with a large initial dose, and then a second antibiotic was added.
Our Baby Boy is very sick and he has a long battle ahead of him. His status is now listed as "serious", thankfully down from "critical" when he was in the ER. Chief concerns now are his fluid levels, kidney function, electrolyte balance, and platelet levels. He'll also have to be given blood because of the many blood draws needed for testing. He has IVs in both arms---one for antibiotics and one for fluids, and has had to catheterized again. All fluids going in and coming out are being strictly monitored, so Katie cannot nurse him right now, but once his electrolytes are up, she will be allowed to start. It is difficult to see him hooked up to so many tubes and machines again.
We expect many ups and downs during the next seven to ten days as Graham fights this systemic infection. Although his little body has many challenges ahead before he gets through the infection, we are confident our tough G-Man will prevail. What is very comforting is the staff at the NICU. The Surgery team is now working with the Infectious Disease team to come up with the best plan of treatment. We should know more tomorrow.
We could not be at a better place. (He has to be in an isolation unit in the NICU, and Katie says it has a more comfortable chair than the other modules ... small silver linings in the big dark clouds!) Bill and Katie were also lucky enough to get back into the Ronald McDonald House on very short notice. Thanks to generous friends with extra beds, Grandma and Grandpa Ryder are back in Indy as well as wonderful moral and laundry support.