cardiac MRI

We left for Duke University on Tuesday morning, after dropping off the puppies with friends. We had been told it would take at least 2 hours, and even the GPS had us at 2 1/2, but we made it in just over an hour and a half... so we had some time to kill. We checked in to our hotel and just kinda sat on our hands for a few minutes til it was time to leave for the hospital. When we got there, we got checked in, triaged, and then sat down with the nurse to start talking about the actual procedure for Wednesday. I was honestly rolling my eyes inwardly as she over-explained the MRI process (we've been through it a few times, I get it!). Then she mentioned offhandedly, "well of course we'll be intubating him..." PAUSE, REWIND! What do you mean, you're sticking a tube down my son's throat? I had no idea. He's never been intubated before, only had to be monitored to be sure it wasn't necessary (sometimes a small child can go "too far" under the sedation and forget to breathe, but K has never had that problem). I was freaked out even more than before at this point, and thennnn she had me sign the waiver listing all the things that can go wrong! Needless to say, I was a bit of a basket case. We talked with a cardiologist, who explained everything that the nurse already had, and then we left.

After leaving the hospital, we went back to the hotel and took a group nap, then we went and trespassed (oops!) at a park that IBM has for their employees, and got ice cream for dinner. We tried to give K a good night, but we were as stressed as could be, and ended up calling it a night pretty early.

That night, as you can imagine, I got zero sleep. I kept wanting to pick Keagan up and just hold him. I'm not sure why this MRI was harder for me than the others he's had before, but it was. So we got up early the next day and headed out to the hospital. When we got there at the time the nurse told us to, no one was ready for us. Turns out, they're so on their game that you don't need 2 hours to register, only about 10 minutes... but we were already there, so they actually got us rolling a little earlier than we would have normally.

When the nurses called us back from the waiting room, they once again talked the procedure to death, four different times... but hey, at least we had no questions? So then the anesthesiologist had me give Keagan some oral medication to make him sleepy... she called it happy medicine, saying most kids act drunk and lovey, but I wondered what it would really do to K, since he's a major lovebug anyway. The answer: he was MEAN! Well, at least to daddy. I caught no ill effects of temper. So while we waited for the medication to take full effect, we talked with the cardiologist who was actually doing the procedure. He explained that Dr. Miller (our Fayetteville doctor) was just looking to be sure his findings were correct before we went forward with surgery (which I appreciate infinitely!).

Once enough time for the sedative had passed, I carried him back to the MRI room. I held him while the nurse put him under with laughing gas-- and she rambled about Skittles in buckets, or something... by this point I was trying not to cry so I wasn't really focused on her. When they took him from me, I gave him a kiss and said a prayer for him as best I could form words-- although lately my prayers really have no words, and I have to trust that God understands that anyway.

As James and I walked down to the cafeteria, I was really out of it. James kept talking to me, but I couldn't understand what he was saying at all. I felt like I left myself upstairs. I'm sure I looked like a maniac, and eating food was a major ordeal. The nurse finally called me to say he was intubated and that the procedure had begun, so we just sat out in the hallway and waited. After about two hours total, they finally called to say we could meet with the doctor. Of course neither of us really cared what he had to say before we saw Keagan, but I guess he wanted our full attention (he didn't get it, but he ended up pulling up the MRI images at the nurses' station in the recovery ward after we had checked on Keagan). He said that Keagan's issues weren't as bad as he was expecting-- I gathered that he was expecting to have to admit him immediately and do surgery without delay, when it's not a life-threatening emergency at this point, it only needs to be done soon. He said Keagan was about a 5 or 6 on a scale of 1-10, and that it could be a lot worse. He showed us some of the images of Keagan's heart and said we would have to watch for his bicuspid valves to have issues for... ever?

Once I got to Keagan's bedside, I bent down to kiss him, and he woke up enough to mumble that he wanted to "go right now mama!" before he went back under. His voice was so raspy and broken from the ventilator that it just shattered my heart. I got to hold him, and he wrapped his arms around me and didn't want to move again. We were supposed to get him drinking fluids, but he was so out of it that he was refusing. After about an hour, the nurses started to get a little concerned that he just wasn't waking up (I tried to tell them it was naptime anyway but they didn't listen) or taking any fluids, so James jostled him around some and pushed the gatorade hard-- he took it, and the nurses said we could go, even with him being so groggy. So I started to get him dressed, and then he started throwing up. He threw up about 3 times, every bit of liquid and acid in his little belly, and then he just wanted to be held again. The nurses wanted him to take some Sprite or something, but he wasn't having it (I wouldn't have either). So we wrapped him in a sheet and took him to the car, armed with those pink puke buckets and extra towels. He didn't eat or drink much on the ride home, and I sat in back with him just in case most of the ride. But when we got home, he laid around with me for a while, then had a sandwich and a few cups of juice.

Today, his voice is still kind of raspy, he just sounds like he has a croupy cough. But he's eating and talking, although he's fussy, he's mostly back to normal.

The game plan now is to wait for the full report to go to our cardiologist, and we should be meeting with him next week to devise a plan for surgery and possibly set a date.

Next week is also very busy for us, Monday we have his first speech therapy; Wednesday he has ANOTHER sedated MRI, this time of his head and spine; Thursday we meet with his neurologist. Thank God for calendars, because I wouldn't be able to keep this all straight otherwise! Hopefully it calms down in a few weeks, because I can't handle this being the new normal! I'll update again when I have more information, and as always, thank you all for the prayers and encouraging words.

update before the news

Since I last posted, we've been having a lot of developmental testing done. Keagan is delayed, although not severely, and only in the aspect of his ability to communicate. His cognitive skills are on track, so he can understand everything, and continues to learn things at a rapid clip. However, his speech continues to decline, and it is a struggle for even me to understand him a lot of the time. He will begin speech, physical, and occupational therapy within the next month, and will begin a transition to preschool, starting class after his 3rd birthday.

Some members of his care team have expressed concern that he may soon lose the ability to swallow food and saliva on his own. He is showing some of the warning signs, but not on a regular or severe basis. If that were to actually happen, I assume that there would be a feeding tube involved, however we are just watching and waiting for now.

Tomorrow, we head to Duke University Hospital for his cardiac MRI process to begin. He will undergo a pre-sedation physical tomorrow afternoon, and then the sedated MRI on Wednesday morning. The cardiologist we've been seeing here says that the radiologist should give us some feedback about his results after the procedure, but I guess we will see. A week or two after the procedure, we have been told we can expect a date to be set for surgery.

Keagan's neurology appointment has been moved up to March 31, and we are so thankful! He will have (sedated) MRIs of his head and spine done the day before, and his neuro is opening the clinic early just for Keagan to be seen (the power of prayer at it's finest). His bad days are increasing in frequency, although since we've gotten two puppies, they seem to be a little less severe. I'm no expert, but I feel that his MRI results will show an even further progression.  Side story: When I went to schedule his neuro MRIs, I spoke to the head of radiology at Cape Fear Valley Hospital, who said that he remembered K's last MRI, because he was called in to consult on the results. It turns out that we were not told that Keagan appears to be missing the mylar sheaths in his frontal lobe, leaving his brain tissue and nerves exposed-- but we will know more after the MRI, because it may have just been a fluke or lack of development due to his young age.

So, I think that catches us up before we go in to the cardiologist. I'll update more as I know it. Thank you always for all of your prayers and support.