It's 4:30 in the morning Indy time, I just fed Keegan 4 oz of formula and am currently listening to him babble and cry. This was a much different story just a few short days ago. I will try to tell you the most concise version possible but we have had many misdiagnoses and MANY MANY tests.
On Tuesday May 11th we had a barrage of tests run. First thing was the swallow study. They sat him in front of a special x-ray machine and fed him a bottle. First let me preface this story by saying as soon as we started moving him he started to vomit. He hadn't had ANYTHING on his belly since Saturday and that was only 2 4 oz bottles so what he was throwing up was really disgusting, at one point I questioned whether or not it was feces. But, back to the story.....he had the swallow study, failed the regular bottle-he would gulp, gulp, gulp, gulp swallow and then part of it would go down the trachea. Tried a thicker bottle with cereal, fail, same thing happened. They then tried a puree, failed that too. So needless to say we knew something was going on with his swallowing.
We went back up to our room only to be taken back downstairs a little while later for a EEG. Kee had been having spells that we were a bit concerned about. He would stare off blankly and I would wave my hand in front of his face and talk to him but to no avail. Our team of complex care doctors thought that he was having seizures. As soon as we go him down to clinic he started vomiting again, Catrina, our WONDERFUL (beyond words) nurse collected the towel so we could show all of the doctors what he was puking up. We completed the EEG and headed back up to our room.
Later that after noon, his health began declining. This was one of the parts that scared me the most. He became VERY lethargic, didn't open his eyes but for a second or two at a time and was throwing no matter what position he was placed in. He was going downhill and very very fast, right before our eyes. We had an MRI scheduled for that afternoon, Dr. Clems the doctor in charge of the complex care team wanted one done. Only problem was that they thought they would have to sedate him and since he had had food in his swallow study they were unsure whether they would be able to get it done or not. So we went down there anyway with the charge nurse of the infant unit that we were on. We signed off for the MRI and took a little walk, I hadn't seen fresh air since 3 am Sunday morning.
Ryan and I headed back to Kee's room where we ordered some dinner and was settling in for the night. A short while later Elizabeth, the head nurse brought Keegan back to us. Shift change was about to occur and we were lucky enough to have Nurse Laura for the 3rd night in a row. They were doing their usual shift change info exchange when Laura noticed just how bad Keegan had gotten from the night before. Her, Catrina, myself and Ryan began to talk. I told them how unsatisfied I was with the information I had been getting from this complex care team and that something needed to be done fast. His breathing was slowing to about 6-7 times a minuter and his heart rate was dipping too. They told me if I was unsatisfied with his care they could call "cart" which means we would get opinions from other doctors. After talking it over with Ryan and the nurses we decided for our sons sake this was the best thing to do.
Within minutes our room filled with doctors, nurses and residents. Everyone was calling for different tests and other things to be run. About this time Laura, our nurse, phone rang. It was radiology and the look on her face practically told me EVERYTHING. She handed the phone off to a doctor (couldn't tell you his name) and he left the room. Everyone was scrambling around me while I started balling. My baby was becoming more and more unresponsive, something needed to be done and done FAST! The resident told me that they were taking him down to the PICU (pediatric intensive care unit) because his breathing had gotten so bad. A very short while later a new doctor came in. He was rushing around and in the haste of things blurted out what was going on (because he thought we already knew). Our baby had a tumor growing in the 4th ventricle of his brain and now it was pushing on his brain stem and causing his system to fail. I think most parents would have broken down and this point. When I heard this my first thought was, well lets not just sit around and talk about it, what are we gonna do!??!
A short while later I was told Dr. Ackerman, Keegan's Neurosurgeon, was on her way back to the hospital for emergency surgery. The anesthesiologist came in explained what they were going to have to do, Dr. Ackerman came in explained what she was going to have to do and how it would take quite a long time. He could be under for anywhere between 4-6 hours. At approximately 10:30 pm we walked our baby down to the OR, gave him a kiss and told him how much we loved him. Dr. Ackerman told us to go up to the 3rd floor waiting room, they would call with hourly updates and to try to get some sleep.
At this point I was a hot mess. I had taken not 1 but 2 antidepressants because I was in such a dark place. This did NOT help the situation. Chris and Laura Rexing, some of the best friends anyone could EVER ask for were on the way to visit us when all this went down. They got to Riley just as he went into surgery. They helped us stay sane for the 7 hours he ended up being under the knife.
Around 5 am on Wednesday the 12th Dr. Ackerman came out of Surgery in her scrubs and explained to us that she removed a 6 cm tumor from Keegan's brain. To get an idea of 6 cm, here you go:
The tumor was pushing up his cerebellum and putting a lot of pressure on his brain stem. The pressure on the brain stem was what was making all of his systems malfunction. He couldn't swallow (toward the end of the day on Tuesday he couldn't even swallow his own spit!), He was having difficulty breathing, his digestive system had slowed WAY down (thus the no pooping), he was zoning out (ie seizing) and all because of a 6 cm tumor that absolutely NO ONE had a clue was there.
I have had 3 doctors come and apologize to me. Dr. Ackerman apologized for no seeing it on any scan at all. She was dumbfounded as to why she had overlooked it but after looking at the scans myself (and by no means am I a professional) I could see where it would be overlooked, the color matched that of the brain matter around it and until they did that MRI with contrast and the tumor lit up like a Christmas tree no one could ever tell. Dr. Clems, the doctor in charge of the complex care team, found me in the parent's lounge where I was trying to take a nap. She came in with her tail between her legs and pretty much told me that I am the reason we got an answer as quickly as we did. I knew something was wrong with my child and I didn't give up. She told me I was a good mother and should not feel bad for calling cart like I did. Yesterday Dr. Walsh, he geneticists came into his PICU room, shook my hand and apologized deeply for missing it as well. The thing is I know no one did it purposefully, it was just one of those things that until it reared its ugly head, the CT's just weren't good enough to depict what was actually going on in there. I don't really hold a grudge against anyone; okay maybe a little one against the complex care team-they wanted to run every test in the book and I felt like they didn't want to hear what I had to say. But....that is another story for another day.
So when Dr. Ackerman came out of surgery on Wednesday morning she did tell us that by the looks of the tumor, she believe it to be malignant. My heart sunk a little at that point but I was not terribly surprised, anytime I heard the word tumor I guess I just associate it with the "c" word so it wasn't too huge of a surprise. She sent it off to pathology to be tested of coarse. the final result should be in sometime next week so we should no for sure how to attack this thing.
We have met with a social worker, part of the oncology team and MANY MANY other people. We are in the process of getting into the long term Ronald McDonald House across the street from the hospital, we have priority on the list because the nature of Keegan's illness but have yet to get a room.
He is doing a little better every day. On Thursday he had a central line place while under anesthesia. This will be for chemo and blood draws. He is a hard little guy to stick so this way is just a little bit easier. They also removed his extra fingers and toe during that surgery and took a spinal tap to test the fluid for cancer cells.
Even though he is doing better and is now off IV fluids, had a couple of his lines removed, and the catheter out I am still scared as hell. We WILL beat this thing, I just want to find out what we are up against!
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