On the Mend

Graham has had a good couple days. From Bill and my standpoint, although the swelling has only gone down a bit, we can see that he is trying to open his eyes and is acting a little more alert. Dr. West is very happy with the way things are going. His rash is going away and he is still peeing. His platelet levels are a little concerning. Those levels are not staying up which means those little infection warriors are fighting hard and needing to be replaced. They have given him the same amount of platelets that they would give to an adult. He is fighting a good fight, that's for sure.

Graham's skin is still peeling and there are a couple theories as to why he is peeling so much. We have made it so his dry skin is not uncomfortable by putting a gel-like product on called Vigilon. The clear tape-like stuff on his hands and feet is the Vigilon and it's working like a charm.

So right now, we are just waiting for the swelling to go down enough to take out the breathing tube. Slowly but surely, we're seeing our little boy come back to life a little bit at a time. Each day he is better than the last and that is all we can ask for. Keep it up, Graham!!!

Still Healing

We took some pictures of Graham's omphalocele today during his dressing change. They have trimmed away some of the vicrylmesh that was covering the omphalocele and are happy with the tissue that is starting to form that will soon be skin. The white part that you see is granulation tissue. It looks very open and scary, but we are assured this is what it is supposed to look like. It is healing well. When Graham has his final surgery in the fall, all he will have is a small incision down his abdomen and even have a belly button! It's hard to imagine.

Our little baby is still battling horrible swelling. He has gained over 2 lbs just in fluid. The skin on his hand and foot is actually starting to peel off. Dermatology was just here and they are keeping an eye on the rash and the peeling. Poor little guy. We shift him from his back to one of his sides every two hours because the fluid starts to pool. Even though Graham's kidney function is getting back to normal, the swelling will take some time to go down.

G is still on the ventilator. His lungs are better and he's basically breathing on his own, but with all the swelling, that can make it difficult to breath, so the tube stays in for now.

As all bacteria and viral cultures come back negative, there are still no answers as to what has caused all this to happen. As frustrating as that can be, I am focusing on making sure Graham is comfortable. All that swelling makes his skin very tender to the touch. Mommy and Daddy are having to refrain from the kisses on the hands and feet to the forehead only : ) He is getting morphine and another pain med I can't spell to help him get the rest he needs to mend.

I have to say, Graham is quite the heartbreaker here in the NICU at Riley. He's got all the nurses wrapped around his puffy little finger. He gets lots of visits from nurses he's had in the past and they all dote on him and give him nothing but the best care in the world.

Upswing

It finally looks as though things are turning around for Graham.
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.

Baby Steps in the Right Direction

This is Grandpa and Grandma Ryder relaying today's message. Katie and Bill are with Graham in the ICU following a surgical procedure to put in a central line under his right clavicle. Most importantly, this line will allow a variety of nutrients (and calories) to be given to our G-man. Also, blood can be drawn from the this central line...no more sticks!

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.

Sick Baby

Graham a week ago compared to yesterday.

We were told that in cases like Graham's, it often gets worse before it gets better. I think that's what we're experiencing now. Poor little Graham, as you can see from the comparative pictures, has some horrible swelling. His kidney function is way down, perhaps in order for his body to compensate his other organs. We're now all doing the pee dance because he is retaining all the fluids he is getting through his IVs and not peeing them out. They gave him a diuretic last night and it didn't work. Not a good thing.

The mask with the tubes attached is a CPAP machine. Yesterday, a chest X-ray showed Graham's left lung had collapsed. The CPAP helps build it back up without having to put him on a ventilator and it's working slowly but surely. Another X-ray at midnight showed some improvement.

Today we're anxious to talk to all of our doctors and find out what they can do about the swelling and see about getting those kidneys functioning again.

Graham is such a brave boy. He does better than Mommy when they stick him for IVs. He has very small veins and with the swelling they are even harder to find and then the IV doesn't stay in very well. He's been stuck 10-15 times over the last 2 days along with having blood drawn every 4-6 hours. Such a trooper!

In the picture above, he is getting a blood transfusion to get his red blood cell count up and that is beginning to work. His levels are not yet where they want them to be, so he'll get more blood today.

We should know today exactly what the infection is when we get the results from the lab cultures. The infection most likely originated from the surgical wound around the omphalocele. He is still very, very sick. The docs said it takes 24-48 hours for those antibiotics to take full effect, so hopefully after today we'll start to see some improvement. We'll let you know about the changes. Thank you so much for your comments and prayers, your support is felt and helps more than you know.

Back To Riley Hospital

After a difficult and anxious week at home, we are back in the NICU at Riley. Graham evidently contracted an infection before he was discharged from the hospital on Christmas day. He appeared normal the first few days home, even to his Ft. Wayne pediatrician, whom we saw Tuesday. But things began to deteriorate as the week went on. His incision started opening up, he was a fitful sleeper, spit up often, had minor rashes that came and went, and was not a hearty eater. At first, his symptoms did not raise alarms with the phone staff at Riley (with whom Katie was in constant contact), but yesterday they told us to bring him in to the emergency room. We were coming anyway!
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.